This week’s questions are all about coping strategies. Traveling, panic attacks, aging, job hunting, emotions, obsessions – it’s a great mix and I think we’re going to come up with a great big pool of potential strategies that we can all draw on when needed.
You know the drill–if you’re on the spectrum, either formally diagnosed or self-identified, you’re welcome to join in. Answer as many or as few as you like. Do it here or anonymously at Survey Monkey.
1. I am wondering if travelling is hard for all Aspies as they age or if it is just me? I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here
2. Is liking or disliking foreign travel related to ability to pass for NT at home?
3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)
4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?
5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?
6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?
7. How do you motivate yourself to job hunt? more details here
8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.
9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?
10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?
Musings of an Aspie 
Q1 – 4 Oh travel. I hate travelling.
I cope better if the destination its one I’m familiar with. Not knowing where I’m going to sleep is actually scary.
My body shuts down if I travel for more than, say 3 hours. My digestive system slows, I don’t perspire as much and I don’t need to wash my hair for a few days.
I actually enjoy flying and love aeroplanes, but airports are ridiculously aggravating, there are too many variables and places where things can go wrong.
my answers:
1. Travel seems to be getting easier as I get older, though I have slightly less motivation to do it. In part, I think it’s easier because traveling with a child (when I was younger) meant more responsibilities and logistical juggling and one more person to keep happy. It’s easier to say “I need to go back to the hotel room and nap for an hour” in the middle of the day when I don’t have to worry about spoiling a day at Disney World for my daughter. Though she probably wouldn’t have complained much. I’ve also been intentionally working on coping strategies when traveling, like bringing along comforting clothes and stim toys and snacks, planning to accommodate my sensory limits, etc. Still, I love coming home and being at home.
2. I’ve read that people on the spectrum enjoy relationships with people from other cultures because cross-cultural relationships lessen the need to pass. Any minor oddities will naturally be attributed to cultural differences. This makes a huge amount of sense to me and might account for some of why I’ve always been so comfortable with my husband.
3. I’ve done long flights (17 hours with a stop in the middle, 13 hours straight) on multiple occasions and find them challenging. Coping strategies:
* bring along comforting things: iPod with favorite music and games, books to read, food that I can eat no matter how crummy I feel, comfortable clothes I can add or subtract in layers
*try to stay well hydrated (water, not soda) and eat as healthy as possible (avoiding sugar, especially)
* try to sleep at least a little
*distract myself by watching the in-flight movies (which use up a big chunk of time)
* try not to think too much about the overall amount of time I’ll have to be on the plane
* in the worst case, just kind of go somewhere else mentally for a while
4. I don’t experience panic attacks.
5. Weirdly the answer to both of these is yes. I feel like a lot of my autistic traits are becoming more noticeable/prominent as I get older. In part that’s because I’m making less effort to disguise them but also because it’s becoming hard to expend the energy required to pass. But I also see that I’ve developed a lot of coping skills over the years and they’ve been a solid foundation for building new coping strategies now that it’s becoming harder to just power my way through some things.
6. All of this is really hard for me. I mostly don’t. I’ve been trying to learn to be quietly supportive, ask open ended questions, be there for the person without doing anything “fix-y”, listen, offer reassurances rather than criticism or logical solutions. This is generally an area when I don’t have a lot of practically applicable skills.
7. I’ve never had to do this and wouldn’t know where to begin.
8. Difficulties become magnified–for example, I’ll do a lot of extreme catastrophizing for a couple of days before my period starts. I recognize it for what it is and remind myself that my brain is playing tricks on me. Doing that makes it a little easier to ignore it. My sensory sensitivities seem to worsen but overall I get more sensitive and emotional, so it may just be a byproduct of that. I’m not sure about cognitive effects.
9. I probably should but I don’t consciously do this.
10. N/A
I do #7 only. Hayed job search too, but I found and used concept of “in order to inflow one must outflow”, so when out of work for security guard job I did 100 snail mailings, usually got a couple bites. Statistics is how I coped. Same for telemarketing job, kept penciled atick counts of how many I dialed per hour, if I kept it up then money eventually comes my way. I suspect in many fields this
“in order to inflow one must outflow” applies. Brst to you all.
anonymous answers from survey monkey:
Q1: I am fine on everything except buses where I am anxious that I will get lost – for years I needed a timetable and/or map with me on my knee for the duration. I just got over this
Q2: no idea, i was born ‘abroad’ and have always travelled a lot, I love travelling and seeing new scenery and eating lots of things
Q3: hate going through immigration, customs etc. get quite stressed which manifests itself in grumpiness. I make sure to eat and drink water and I walk up and down on the plane
Q4: I go to the toilet!
Q5: more autistic in many ways but less in that my partner supports me to pass more effectively more often
Q6: I am alexithymic and to me I seem to just explode with anger or distress but my partner says she can tell when I am getting very frustrated/overwhelmed/stressed but that it is really hard to intervene to prevent meltdown. Meds do help if I take them at point of no return. My meltdowns can last for hours so the revelation that meds can help to cut it down to half an hour was lifechanging. Meltdowns are only about once every few months when I am working part time but if I am not working or am working full time they are more frequent and then I get exhausted and burn out
Q7: I hate not working, so in work I start job hunting 6-9 months in.
Q8: I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.
can’t remember had hysterectomy last year
Q9: sometimes, usually break is because I forgot to eat or pee! Once my interest is done it is DONE
Q10: nope
SOMEONE ELSE DOES THE TOILET THING!!!!! 😀
Bathrooms or kitchens are escape places for me, too. If we’re having a party at our house, I can escape into the kitchen and busy myself with tasks. I will often escape into someone else’s kitchen at their party, offering, quite sincerely, to help. It gives me something to do so I don’t have to make small talk with strangers.
anonymous answers:
Q1: Note: I’ve very recently self-diagnosed, so haven’t really experienced much here while also being aware of being Aspie. After two or three days, I’m looking forward to coming home. A week is too much for me and I start to feel like I’m half-functioning, just trying to kill time until I can come home again. I can get quite stressed or miserable. When my husband worked abroad and I went to visit (typically 5 days) we had major arguments right at the end of the break – I wonder whether my discomfort at being away from home contributed.
Q2: I have no idea! I don’t really like it, and I’m not sure whether I pass for NT or not because I never thought I wasn’t NT. I haven’t told anyone I know about my self-diagnosis, so I don’t know how I pass for NT and whether they’ll be surprised
Q3: When I was visiting my husband in Dubai regularly, I had routines for the airport and activities planned for the plane. I think travelling alone made this much easier, because I could do what I wanted and keep away from crowds at the airports.
Q4: I haven’t cracked this, unfortunately. It doesn’t happen too often, and is more meltdown than panic attack. It’s been a big problem for me as long as I can remember because other people have thought I’m weird and need to get control over myself, but I really can’t. Maybe now I’ve self-diagnosed I can learn how people in the same situation as me manage this.
Q5: When I was younger, I was far more concerned to fit in, have friends, be seen as normal. As I get older, I accept that those things don’t make me happy and I worry less about what other people think, so I’m less concerned about strategies (even undiagnosed, I’d developed techniques to deal with social interactions). However, I can get away with that right now because I’m a postgraduate student – it’s normal to be a recluse and a bit eccentric! I’m very concerned about jobhunting once I complete the qualification and hope to improve my coping strategies (I already have books on order – I’ve always turned to books to help me understand stuff rather than other people). I think over the years I’ve gradually acquired a better idea of what’s OK in NT-world and what isn’t, although it’s often had to be explained to me, so I guess I cope better in that respect.
Q6: I’m really not at all good at supporting others emotionally. My reaction is to be practical and to advise what they might do. I don’t know if I’m alexithymic (I had to google what it meant, but a test I found thinks I am, though I wouldn’t have thought I was). It’s very rare that someone would come to me just to talk about their emotions anyway (so maybe everyone else has twigged how I am except me).
Q7: I’ve not had to do this for a while, as I’ve been a full-time student. I try and keep lots of previous applications on file, and keep my CV up to date so I don’t have to start from scratch but can just adjust information, without having to do too much from scratch. Once I’ve found a job I want, I just keep chipping away at the application and promise myself a nice glass of wine when it’s finished.
Q8: Controlled by the contraceptive pill, and I don’t notice differences.
Q9: No – I tend to find it’s taken over from activities I should be doing, and I have to put it to one side to get on with them – very frustrating
Q10: no experience of taking these drugs
anonymous answers:
Q1: I like to travel but it makes me anxious. All of the planning involved to make everything feel familiar is exhausting.
Q2: I have only been to Montreal, and there the social expectations are less judgemental. My close friends are from other countries.
Q3: planning and navigation, ugh…
On long flights, I get twitchy and work hard to keep a calm body. My legs always ache afterward.
Q4: Go to my “happy” place. I always get a stomach ache.
Q5: Def more autistic now. Coping strategy is usually to avoid doing things that I know will wind me up. When I was younger I would suffer through it.
Q6: I’m a good support to my family, but that’s it. I usually just try to listen and say “Ugh” and “sorry” and “I know” a lot when others are complaining.
Q7: I don’t. The longest I have held a full time job is 2 years. I’ve been in school for the last three.
Q8: Any ability to pass is tenuous at best. My imagination is stronger though, and I am less harsh with myself over negative emotions.
Q9: Yes! I am avoiding a project for school right now. It feels too big, and I like it a lot.
Q10: no.
anonymous answers:
Q1: Depends on how much the travelling organization depends on me. The more choices I have to make, the more exhausting it becomes.
Q2: Not really. I think it’s more what you do during the travel, to have fun.
Q3: I am bothered by the noise at the airport and bring earplugs. I find airports much easier to navigate than train or bus stations.
Q4: I “make” a quiet spot for myself.
Q5: I can cope better in some things but the overall stress level is higher because of work (so the energy is lower)
Q6: I can’t really cope with others’ negative emotions and I flee or try to change the subject.
Q7: Panic is a big motivator.
Q8: I get paranoid over staining myself, and this is very distracting and exhausting.
Q9: I had to quit some things abruptly not to take them on again because they were too time-consuming. Intensity is not an issue.
Q10: I have never taken such drugs.
Let’s see.
1. I actually like to travel, but I travelled in my 20s (and am about 30 now). I do have to sleep a *lot* while traveling, which can frustrate me. Time is precious, when traveling, and sleeping in every day can make me feel like I’m wasting it! I do tend to need someone else to ‘kick off’ traveling for me–to do the planning–or to give me a mental ‘excuse’ to travel. For instance, it’s harder for me to travel to somewhere I just want to go, solely for myself, than to go somewhere where a friend or family member lives. Not only is it more expensive (though I’m fine with staying in hostels, which are much cheaper than hotels), but I don’t feel like I have a ‘reason’ to go places on my own, just for my own pleasure.
2. I don’t know. I can pass (I think, though likely less well than I imagine I can) at home, but the nice thing about foreign travel is if I act too abrupt or goofy, I’m just a ‘loud American.’ And I think my attentiveness to language and desire to be polite earn me points across borders, as well. I come across as foreign but very interested and well-intentioned, I think. People just don’t know that that’s how I come across in my *own* country, as well–weird but actively desiring to do no harm ;P
3. I was expecting to have problems with flying, but I actually enjoy it. Well, enjoy as much as one can enjoy something that involves seven hours of being crammed in a tiny seat (I’m lucky and am small, so I have more relative room to move around than many passengers). I find it almost comforting. A few hours of no choices, just reading, trying to sleep, waiting around for the minor entertainment of tiny food, and watching the landscape below. I think if I worked at thinking about it too hard (the inherent helplessness of flying), I could scare myself, but I deliberately avoid thinking too hard on planes.
4. I have yet to have a panic attack in a situation where I truly had no way to get away. (Well, maybe once, but I didn’t know what it was and it wasn’t on a plane.) I do have them regularly at work, and I haven’t worked out a great solution yet. I try to distract by doing a short activity like a lesson in DuoLingo, paired with a walk or 10 mins. meditation outdoors. It doesn’t always work.
5. I’m 30, and feel like my coping strategies are the same strength as they were, *except* that I’ve just recently become aware they *are* coping strategies and that I may have an inherent inability to perceive and experience social interaction in a way many other people can and do. Realizing that has made all of my coping strategies take a hit, because now I feel like I have to actively cultivate and maintain them and no longer see a point in the future where I’ll be ‘free.’ I used to think I was running a race with a finish line that could appear any moment; now I feel like I’m running a race that has no finish line at all.
6. I have a difficult time dealing with strong emotions. I want to talk to others about them, externalize them, but I can do that forever and now fear doing it because it hurts and wears down the people closest to me. I also want to shut down when I feel them. If I can get myself to cry, the endorphin hit works wonders for the short term. I’ve been experimenting with meditation, exercise, DBT techniques, and pain-causing exercises (like holding ice) that might give endorphin hits but do no damage if handled carefully. As for others–I don’t know. I do the best I can, and know/can sense the basics, such as when a hug might be appropriate, but I have to struggle to keep myself in the moment with the person and be patient. I’m awful when I’ve caused the pain myself. I can watch someone I love cry after I’ve fought with them and feel very little other than tense, blank satisfaction that I’ve gotten a response from them that I understand (and, I suspect another factor in the satisfaction, is that I had *control* over their emotional response). I’m struggling with how to ‘unlearn’ this and feel satisfaction when loved ones have their *own* emotions, ones I didn’t have any part in causing or that are unpredictable; I’m not sure I’ll ever learn. Sometimes I feel like a sociopath, and it makes me tired, because I want very much to connect with others, and, while controlling them emotionally can be momentarily satisfying and reassuring, it doesn’t give me any sense of connection in the long run, hurts others, and–well, makes me feel like a sociopath, which is not high on my fun list of self-worth-creating feelings.
7. I asked this question. I have no answer! Right now, I feel like I can’t job hunt partially because if someone asked “Are you the best person for this job?” I would honestly want to say “No, I’m sure you can find about 20 more socially-aware and -responsive people who could do this work just as well, please hire them, you don’t want me.”
8. Depression, frustration, and anger, as well as fatigue, all peak for me during ovulation and PMS, with fatigue lingering throughout menstruation. My EF also goes to hell in a handbasket.
9. I try to manage my special interests so that I take continuous short breaks from them, because I’ve found I do engage too intensely, if I’m not careful, and end up spending too much time and/or money on an interest that has poor returns, or that warps my sense of self and limits my social participation (for instance, if I get interested in a subcultural group, such as fandom, suddenly I’m only spending time in fandom circles or with fandom people).
10. Nope!
Otterknot, I love your comments. I can identify particularly well with so much of what you say. I really like that bit about ‘weird – but actively desiring to do no harm’. This is my ‘how to live in the world’ motto. I wish there were more people who actively wished, and tried, to do no harm! Your honesty is also very enlightening, and appreciated.
Thank you! Writing about myself helps me to articulate things that are vague for me until I get them down on paper. I’m glad reading what I write is enjoyable 🙂
Doing no harm is so much trickier than it seems like it should be. I spend a lot of time working on humility–the desire to do no harm without also desiring to be rewarded or recognized for the fact. It helps cut down some of grandiosity and egotism that I think can come with the surge of an ASD special interest–that sudden certainty that I am going to be the *best* at something and know *all about* it.
Oh god, I remember having to go through something like that. The price others had to pay for my bitterness at being different and awkward was my superiority complex. In my defense, my brain genuinely believed I was right on certain things and nobody could adequately explain why I wasn’t so I felt quite justified in my apparent arrogance. My eventual solution to this problem was to convince myself I was wrong about most everything. I’m not sure that was a very good coping mechanism in hindsight. I have a hard time with moderation 🙂
I’m still working through that “Wait, I’m not right about everything? That must mean I’m wrong about everything!” bit. You’d think that realizing one extreme isn’t accurate would keep me from jumping to the other extreme, but no. A pox on black-and-white thinking!
Is there anyone who can help you identify things that would make you good for a particular job? Because if so you could get them to help you create a good answer that you could then practice and practice and almost learn (not so much that you recite it, but enough so that you can sound like you’re just coming up with it). That’s how I managed to do okay in job interviews in a past life (I actually got 3 job offers at one time!) – just practicing the answers to what questions were likely to come up. And not going for jobs that I knew were out of my league (well one of those offered would have been in terms of the number of staff I’d have had reporting to me – not my greatest skill!) You have to be able to see yourself doing the job. And maybe that’s another strategy – actually spend time picturing yourself doing well in the interview and starting the job successfully. If you con your brain into believing you can do it you’ll sound more convincing to the interviewer.
You’re right, about the being able to see myself doing the job part. That’s where I’m struggling right now. I (selfishly? out of need for healing and rest? out of an inability to truly predict consequences?) am having a difficult time seeing myself in any job at present. I feel too much like I’m on an inevitable slope downwards to giving up on life (not in a suicidal sense, but in a failing to care any longer sense), with more and more tasks becoming harder to imagine doing in the long term. I’m not sure how to regain that lost momentum–and what bothers me most is that I don’t really *want* to regain it, even though I know I have to regain it. It’s like my mind honestly thinks the world would give me space to stop participating for a while and then let me back in. I know that’s not how it works–taking time out would result in reduced savings and lost work experience that could never be regained–but I worry that I’m incapable of taking that knowledge emotionally to heart, not just being aware of it theoretically.
1. Sometimes I get quite unsettled (when I started my second year of uni and moved into my new room in a different building, I had what I can only describe as a panic attack on the first night, it was pretty horrendous, but that was an unusual one-off and I didn’t feel great for that whole term really, for various reasons) but for the most part, I’m okay. The bigger issue with holidays etc for me is worrying about all the potential for sensory overload and feeling less able to escape, which isn’t really to do with the travel in and of itself. Having said that, I’m about to do the “year abroad” bit of my degree, studying law in Paris for a year, which is TERRIFYING, so we’ll see how that pans out!! Also, I’m only 20, so maybe I’ll feel more anxious about this sort of thing as I get older.
2. Potentially? I think I can pass fairly well, and usually the only thing that particularly makes me anxious about travel abroad is – sorry to sound like a stuck record – the relative heat of most places compared to where I live in the UK. Impending year abroad (see above) is making me very anxious, though, and this is because I feel massively unprepared and am heading into the unknown in what has so far been a very disorganised manner.
3. I’ve been lucky so far in that all flying has been part of family holidays and therefore organised by my parents, so I haven’t had to deal with airport nerves AND having to organise myself yet. During the actual flight, I tend to listen to music and distract myself that way; particularly if the flight times are all over the place and I’m really tired, I’ll sort of focus on that and decide on an album and tell myself I can relax then.
4. This is potentially cheating in terms of the “not being able to escape” bit, but a habit I picked up through socialising more at uni: I tend to escape to the bathroom if I can’t (or don’t want to) properly leave – you get a few minutes to shut yourself away and calm down, and nobody thinks it’s unusual! If I can’t even do that, I tend to just try and escape mentally if that makes sense; going through songs in my head is something I use quite a lot, or sometimes planning out how I’m going to calm down and make myself feel better when it’s over.
5. I think in many ways I’ve become “more autistic” since starting uni, for a variety of reasons; the additional stresses that come with uni and independence, getting involved with the autistic community online and recognising factors like stimming and sensory issues properly for the first time (I was diagnosed young but everyone seems to have this really narrow view of Asperger’s as a “social disorder” with no thought for the reasons behind that), and also feeling like I can be much more myself and open and, I guess, visibly autistic with my friends at uni than I ever could at home/school. Having said that, at the same time, I’ve become more actively aware of coping skills I’ve developed with age without really thinking about it, and becoming more generally aware of my autistic self outside of the “BUT SO HIGH FUNCTIONING” view of myself that others had imposed has enabled me to more easily actively think about how I could better cope with such-and-such next time, etc. I feel like I should add that, two years into my degree, I’ve never had a meltdown whilst properly in Oxford; I’ve had shutdowns, I’ve had near-misses, and I had a meltdown in the car with my family whilst trying to find my new room (see above), but I’ve never had a full-scale meltdown whilst actually properly in uni life. So in some ways (although not in others), it’s easier than being at home.
6. When I feel strong negative emotions, sometimes I have a meltdown, but that’s usually if there’s people shouting at each other or at me. Usually, if there’s no conflict involved, I go into shutdown, which is usually fairly easy to deal with if the causes are emotional rather than sensory. I tend to go somewhere safe and calm and quiet where I can be on my own (9 times out of 10, my bedroom) and I can’t properly focus on anything so I might just watch random short YouTube videos or scroll down Tumblr without actually taking anything in, until I feel able to face more-than-minimal sensory input again. As for supporting other people, I don’t really know. I tend to offer tea, and tissues, and hugs, and just listen and make sympathetic noises when appropriate. Probably not all that great at it to be honest!
7. Answers on a postcard please! I suppose my closest equivalent would be applying to universities, when I was motivated by a significantly earlier deadline than most because I was applying to Oxford, and concrete universal deadlines don’t really apply outside of studying I guess!! I had a part-time job at the local library when I was in Sixth Form, but that was more by chance, in that I was in the library, saw it advertised, and thought “might as well apply for it”.
8. I’m definitely more sensitive when I’m on my period. (Like right now, and it’s so hot at the moment, and I’m just 999999999999% done with summer and ughughugh 😦 )
9. Sometimes, but not all the time; usually, it starts out really intense, then I might go slightly off it for a few days (think of it as like overplaying a song…. because usually that’s EXACTLY what it entails! :P) but before long it comes back in a less intense way.
10. I’ve never taken anything like that, sorry!
Oh, and for 8, because other people have mentioned it, I should note that I’m on the pill.
And now I find myself wanting to know how others react to birth control pills. I didn’t tolerate it well at all–especially the mood swings.
I’ve been on it for over four years now (because I used to spend one day a month throwing up, drenched in sweat and feeling unable to breathe, basically) and it’s been virtually all positive, sorting out the aforementioned problem whilst I seem to have avoided most of the side effects. I occasionally get pretty awful headaches which I’ve heard is A Thing That Happens, but that’s it. It does mean the stress of sorting out appointments, but other than that, I haven’t got a bad thing to say about them really, I’ve been really lucky.
I’ve heard it can be a lifesaver for people who have bad periods so that’s great that it’s working so well for you. I was on it strictly for BC purposes and it made me miserable. Also, that was like 20 years ago and I know that pill formulations have come a long way since then.
I tried it a decade ago and it made me bleed for three months straight and I was mean. Basically it also made me feel the way I was trying to escape feeling ( sick to stomach and stuff too) so what was the point? I wish I could go on it tho. My periods are hell. I also have a tendency to have fu symptoms and gut attacks too and spend at least two days in bed.
That sounds horrible. Did you try different formulations at the time? I know someone who is very sensitive to estrogen and can only take the low-estrogen version or she feels horrendously sick. Unfortunately, it took a lot of months of feeling bad to find something that worked well.
I tried the pill in my 20s and we went through a couple formulations. All my sypmtoms ending up up being the nice black box listing that you should talk to your doctor about this. That was my first experience that I actually now research all drugs I am asked to take prior to filling prescriptions.
More and more research is being done that does suggest that birth control pills, while convenient and sometimes the answer for some hormonal problems, may be creating more problems than they are solving. I read one study in which women on the pill were attracted to the smell of men who were more biologically similar to them than the men women not on the pill had a scent preference for. The problem with this is that we do not *want* to mate with men who are too biologically similar and women on the pill may be selecting mates that they are poorly matched to from a biological stand point.
The article that I read went on to discuss other possible problems with this such as reaching a point in a relationship where children are being considered and finding out when the woman goes off the pill that she no longer feels the same about her partner once she is free of hormonal manipulation. All theories of course. It was a really interesting article. Either Psychology Today or Scientific American Mind I can’t remember which.
I have never been on the pill and I have always loved the way my husband smells.
I call it Life Control, because without it, I don’t have one! I get the horrible PMS for two and a half weeks and then debilitating cramps and headaches when I actually get “the curse”. It’s so much easier being on the pill, I was a mess without it! The only problem I have concerning the pill is that insurance companies don’t understand that I need to take it constantly and they make me skip a week which is agony for me. I’m looking forward to menopause, it hasn’t been a problem in my family. Probably because we all suffered so much with the curse!
I like to say that I am chemically induced. Without the Pill, I don’t have a hormone profile, and was running the risk of getting osteoporosis in my early twenties. It’s hard for me to relate to other women’s poor experiences of it because I can’t be without it. One person’s poison, another person’s reason for being…
I lost my libido on the pill. Going off the pill, I missed my period for several months and had a serious meltdown or two when I finally got my period back. When I considered contraception again, I opted for a copper IUD. Best thing ever.
I forgot about the bathroom as coping mechanism. I disappeared to the bathroom for most of Sunday lunches when I was a kid. I could be in there for an hour, although it of course never felt even close to that. I used to do that on nights out as an adult too. It would be the only time I would be grateful for a long line in the ladies’ toilets! Then I started to feel ashamed by my need to escape, so I found another way to escape (while telling myself that wasn’t what I was doing at all). I actively avoided hanging out with people that made me want to go to the bathroom all the time. That confidence to step away seems to have come with age, and so too has the ability to identify in advance which scenarios are likely to cause discomfort and determine what, if any, choice I have about engaging with them.
Yeah, I really wouldn’t know where to begin with that at the moment, but hopefully it will come eventually 🙂
I forgot to put escape to the bathroom down too. I know it sounds weird (but hey, weird is what we do, right? 😉 ) but I LOVE bathrooms! Especially in public places. The bliss of being able to shut myself away in that tiny space. Bathrooms are the only reason I was ever able to hold down a job.
I laughed a lot at that last sentence. The bathrooms in any of the offices I worked were not the kind of places I wanted to hide away in for long, but before I was somewhat germophobic (cleaning became a coping mechanism), I was only ever able to survive being in any kind of social setting by disappearing to the bathroom, and hanging out there for as long as I could get away with. Unfortunately, as I got a bit older, there was always copious amounts of alcohol involved in nights out so that the bathrooms began to look quite horrendous halfway through the evening and I think this started to turn me off them. However, I do still remark on a ‘lovely’ bathroom, and if I find a nice one, in a hotel or restaurant, I’ll spend a little extra time in there, perhaps pretending I know how to reapply make-up or something. My favourite ones look like they belong in a palace, with excessively ornate fixtures and plush seating – ideally a chaise-lounge or two. Most important though – they should be every inch as clean as my own bathroom at home!
Yup, me too. I didn’t think to mention it, but I love to escape to the bathroom.
Point 5: Please take care, if you think are becoming more autistic it might be a sign of over exposure and over emulation of NTs. Which is understandable if you are trying to fit in at somewhere like Uni. I have found out that this can lead to what is referred to as “Autistic Burnout”.
If you don’t give your autistic side space to breath and be free as often as it needs it will increase to warn you, till it explodes. I am in my third year, I found on wrong planet people whom have had it last days to 11 years. As to what it needs to breathe, thats the bit you will need to find for yourself.
Love your autism and you will be fine; I thought I had to bury it deep inside as when it leaked out I got shouted / bullied / etc.
Now days, I shout it from the roof tops 🙂
I wish I had known this before. I’m sure I lost my job over it. I worked with the same artist personality types, as well as being surrounded all day every day by NT’s for extended hours. Then I’d go home and they were emailing, calling and texting me because my job had a lot of responsibility. I loved being busy, I loved my work, I even liked being needed and being a shot-caller, but the people there consumed my coping abilities til I had nothing left. They thrived on chaos and a lack of boundaries and refused to even write down job descriptions. As an example, one person got a promotion, with authority and a raise, and neither that person nor management ever announced it – until my boss told me to do this person’s job and the coworker got passive aggressive about it instead of confronting me directly so I became a nervous wreck. It was the perfect storm of fly-by-seatpants-bad-communicators vs an undiagnosed aspie already struggling to stay afloat.
That sounds like a nightmare to me.
I can so, so, so relate to this. I have always be fortunate enough to have my own office space at my jobs, but at my last job, I started out working on the top of a filing cabinet, standing up. The boss did make a space for me, but then I was “promoted” to being the office receptionist as well as a paralegal and moved to a desk area in the front, right next to the copy machine, with absolutely no privacy at all. People would have extended conversations right next to me while I was trying to answer the phone or analyze a case. To top it all off, my boss’s organizational and time management skills were nil. I was supposed to know where each file was at all times, and the one I couldn’t find when called for was often in a pile somewhere under her desk or in a corner. It was horrible. I kept trying to keep things organized so I could work, and the bosses weren’t having it. I told them that I was struggling with the cramped but very public work space, and the boss did nothing (she knew I was Aspie, too, and said I was lucky to be employed). I would cry every day just thinking about going to work, and I eventually had a major meltdown at home over it. I quit after nine months – the only job I’ve ever quit in 35 years (except for when I moved out of state). Unfortunately, everybody knows everybody where I live, and one of the other employees (who had her own dysfunction) was pissed off and is making it difficult for me to find another job in my field. When I see advertisements for “busy, face-paced office,” I just shiver thinking that I might be going back into an environment like that again.
Does a year later find things better?
I do so hope they are.
Q1. It’s hard for me unless I have someone or something familiar with me. Even then I still need at least a couple of days to recover from vacation.
Q2. I don’t know. I’m used to foreign travel because most of my family was born in a different country. I am, however, pretty stressed out when I have to communicate with my cousins who aren’t from the US. Which is odd because I can communicate with parents in two different languages. I think I just don’t know what to expect.
Q3. Sitting in the airplane sucks. No coping strategy; just sleep in the airplane. I also try to have water and food handy before I get on the plane.
Q4. Breathing exercises. Although most of it is probably cured by sleep. Bringing a book to read helps too
Q5. Both. It improves with practice for me, mostly because I’m a business major; most business people on the surface seem to be pretty allistic and severely extroverted. Otherwise it deteriorates because it uses too much energy and I just want to be a hermit.
Q6. I sort of cope; not really. I do a lot of crying, sometimes I obsess over it. I was taught that the world would move on without me even when I still cried, and I’ve observed it to be true 90% of the time. So I try to distract myself by reading a book, talking about a different subject, etc. Supporting someone: hugging and looking at the person. That’s all I can do.
7. How do you motivate yourself to job hunt? more details here
8. No changes in sensory perception other than feeling horrible. Usually get some kind of indication two weeks before it actually arrives.
9. Yes
10. Not for me, although I did think I had ADD at one point.
1. I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover. I take sensory comforts and my husband is amazing when we travel to accommodate me. We eat only healthy foods and protect our schedule but we have still decided now to stay around home for the rest of our life if possible.
2. N/A I am not interested in travel. I do get along with people from different cultures quite well though.
3. I took long flights without too much issue as a teen although it did drain me a lot…now I avoid it completely
4. I use cognitive therapy when I am in the middle of panic attacks. It does not always work. I also employ my husband or go straight to a private place like a corner or washroom or car seat and just breathe and go under a blanket and listen to music until the 20 min window of extreme panic passes. ( minimizing sensory issues is the best thing to do)
5. BOTH. Yes I get autistic as I age…but I am also better at employing personal boundaries and being comfortable with the knowledge of who I am. So while some things are deteriorating in terms of short term memory and executive functioning, my coping skills are more knowledgeable. I would NEVEr go back to my twenties even though at the time I thought they were ok…I like my thirties and am looking forward to the future more than before because I know myself. However I do find that I am dreading any more impairments in communication if that happens…
6. My dad used to answer the phone as K’s counselling service…which is ironic considering I am autistic. I still have people come to me when distressed and through out my twenties people were constantly using me as an emotional sounding board because I could understand all perspectives and think outside the box without being judgy. However before I implemented boundaries this came at great cost to myself. Now I take huge breaks from people, I tell them honestly when I can deal with their particular emotions, and I let it go.I have also done 9 years of cognitive therapy working on boundaries, catastophizing, over reacting or under reacting in particular…it was hard work but I honestly think I have re routed some paths in my brain to cope better in these situations now. I also used to squelch emotion because it was so dramatic, now I let the main part ride through, acknowledge it in a safe place, and find my balance again, accepting who I am. This enables me to accept others where they are. However, I do shut off with extreme emotion still but sometimes this enables me to be a calm presence. If its really bad I will go into my closet under my clothes and just take a long breather for awhile:) People still come to me for advice so I go with what I am good at:)
7. I homeschool my kids and have to motivate myself to do this at times. We go through stages where we homeschool a lot and then suddenly have weeks without. I believe in the unschooling method so at least with that this schedule is better…because they are still learning through play ect…but motivation is hard. I go with my good days and leave the rest. I could never have a job outside the home…it would make me want to die.
8. YES. I wrote a few articles about this on my blog. I can’t take the pill to minimize this and I suffer greatly the week before and during. Also the pain makes me cope less with ordinary moments I would otherwise be equipped to deal with.
9. Yes.
10. I don’t do well with any drugs and always refuse them in therapy or otherwise in general. However, one person insisted since my ADD was so high to try adder all. I went on for ONE day and it suppressed all emotion. I was like a robot. It did exactly the opposite of what it did in my husband and what it was supposed to do. I was dead pan. It was awful and I refused to take anything since. Honestly, I also use cognitive therapy for my ADD and I allow myself most of my whims. I also had years of self repression as a child trying to fit in, while that is sad and came with a cost, it also came with great restraint and self control. I am able to exercise this in most cases of my life, in fact I am trying to do it less to minimize ill effects on the body, but it does enable me to cope better than my husband in regards to ADD even though mine is worse, he needs the meds more and has gone on and off of them for years.
P.S. For anyone who wants more help with anxiety and panic..
**This clinic has a panic disorder test you can take for free and cognitive behaviour you can partake in for 12 weeks for free. No strings. Panic is very different from worry or fear. Recommended by my therapist:
http://www.paniccenter.net/
*On this page short tests tell you what you are dealing with more…worry, anxiety disorder, phobias, depression, stress…they are ALL DIFFERENT and have different reasons and approaches to helping;
http://www.anxietycentre.com/anxiety-tests.shtml
Thank you very much for the link to such an impressive battery of tests ! Asking your advice: from your personal experience, how good do the tests discriminate between anxiety and depression (as comorbidity of ASD)?
The reason for asking: My original diagnosis was depression, combined with what was called a ‘morning pessimum (= low)’. Now after the proper ASD diagnosis, the persistent symptoms sound more like anxiety than depression to me? I still take medication against both, one of which apparently helps (what a pity that this doesn’t apply to you). I wonder if maybe I could drop the anti-depressants and stay functional on the anti-anxiety drugs alone.
Well Its been a few months since I took those tests…even with those or clinical tests in my therapists office I always score VERY high for ADD, Anxiety and Depression…but cognitive therapy helps me so much and I tend to know how to handle myself that I can cope better than people who are lower than me but “normal” if that makes sense…mine manifests differently. That said, I do a bunch of holistic things to help ( meditation, cognitive therapy, reiki, diet control, supplements, minerals and naturopathy…ect.) I do believe in meds for those who can take them and not be affected badly…I would say that it is often experimenting that gives us our best results if we know and trust our bodies. If you feel like you could perhaps drop the anti depressants and stay functional on the anti anxiety I would try it for about 5 weeks…that would give your body almost sufficient time to re adjust ( maybe 6 weeks) if you still feel you need the anti depressants than take them again. My only caution with going off is make sure your doctor is monitoring you and someone in your family to tell you honestly if you are better or worse in general and to watch out for any new behaviours. We did this with my husband as he was on Wellbutruin and I noticed it did not help him much. After a month he was actually meaner. I insisted he go off…he was still depressed but less mean and cruel…so then they tried him on adderell and for some reason that helped him with depression, anxiety and ADD…my point in that story is every one is different. Autistics tend to know our bodies and reactions quite well so go with your gut but allow outside perspective and whatever you do have someone you trust KNOW what you are doing:)
This may already have been covered thoroughly, but, yes, like Kmarie says, if you’re adjusting meds, make sure to have other people who know what you’re doing. And people you trust, who want you to be you, not someone completely complacent, but also want you to function at your best. Try also to have a medical professional around to help with the tapering off or transition to another drug. If nothing else, in my experience, medical professionals get very jumpy if they discover you’ve tried going off a drug on your own before. I think it makes them see you as high-risk, in terms of liability, and they’re much less likely to want you as a patient. Burning doctor bridges now and then is fine, but keeping them around, in case you need them, is good, too! Also, if you find or already have a psychiatrist who’s A+ supportive with seeing how you do with less or a different drug (i.e., one who listens to you and your feedback on drugs), you’ve found a treasure and they’re worth hanging onto, even if you don’t see them very often.
There’s a good chance you already know/have heard all this, Ernest (and Kmarie), so ignore me if you do 😉
Wow!!! Thanks to both of you! So many good points that I would not have thought about on my own!
@ holistic: Memory comes back. Years ago (undiagnosed, unmedicated) I did have some good experiences with meditation. Should seriously relearn some of the techniques.
@ differences in reaction to meds: I could start a blog on that 😉 (All the best for your husband, KMarie!) My comment to which you responded so kindly refers to the triple combination I am taking now which helps a lot. I learned how to titrate the dosage when a depressive episode comes up like last month. It is just frustrating to feel your short term memory going down another notch when the miligrams go up. That’s why I want find to find out (carefully, carefully) if indeed all three are necessary.
@ people who know me: extra good point! Even as a hermit, I should ask family (not living with me but close) plus ‘the’ other two people (at work) if they notice differences in my behaviour that I may not be aware of.
@ doctors: … sigh … as you know … I consumed five psychiatrists until I landed with a seemingly good one. Did not see him in two years. So I definitely should discuss my ideas with him before doing something inconsiderate. I needed to be reminded of that. Working in medical research makes me prone to know-it-better despite proof to the contrary. But you are absolutely right.
Again, I am really grateful: Your response is what I had hoped for when I started to hang around in blogs like these (this one in particular 🙂 )
Apparently I come across as being caring and a good listener – I think it’s because I don’t like talking (to other people) much and the people I do come across tend to talk a lot so want someone who’s just prepared to listen and go ‘umm., yeah’ to them!
You know…I think I come across like that too! I am also really good at remembering stuff I read and helpful links…my personal hobby being self help, so I tend to know where to point them…plus I am good at reading what someone needs and honest enough to tell them…
However, by reading others comments I am realizing the question may be asking also how I handle strong emotions like anger towards me…I SHUTDOWN. I will seem so calm that they will accuse me of no feeling and being an ice queen…or the rare time I have melted down I am called dramatic. But usually it is all ice…and there are so many things I could say but I go mute…then later I rant and rage at home and tell my hubby all the things I wish I would have said…and I may sit in my closet for awhile…and either listen to sad songs to trigger the weeping so it does not happen unexpectedly or wait for the trigger to inevitably happen. I am getting better at letting most of these situations go but in my early twenties it was very damaging. Now I tend to have more boundaries to prevent people from lambasting me for social rule breakers or whatever. (most of the time it was anger at me for being different.) Also extreme crying in someone else…I feel nothing. I want them to stop. But I am compassionate about WHY they are crying and I feel I can help with that, but I tend to just sit there and awkwardly pat their back if they cry a lot….and wish I was somewhere else. When I cry that hard I prefer to be alone anyway, so I wonder if they do too and am not sure whether to leave or stick it out…
Aw, I do both the cold-when-angry thing and the cold-when-watching someone cry thing. The former I find useful, but the latter makes me feel damaged and emotionless…
Have you ever been surprised when you’re fighting with someone and do something to make *them* angry and they don’t react with the same kind of chilliness you would? I had a fight once where someone told me to ‘let it all out’ and ‘say what I really think,’ so I said exactly the things I knew would hurt them most (taking them literally), and was surprised, like an idiot, when they were terrifically angry and hurt. In my world, if I’d told someone to ‘let it all out,’ I would have then been prepared for them to point out all the things that they knew were my weak points (and that I hate about myself), and then have either cried it out or chilly-ed away, and accepted what they said as just–literally what I’d asked for. As fair, I suppose, and accurate. I wouldn’t have been surprised at them for saying it, after I’d (literally) asked for it. It’s like when people say “You’re hurting my feelings” in an argument. I’ll say “That’s fair,” because I know what I’m saying *should* hurt their feelings, if they’re being reasonable, and that’s it perfectly valid for them to have hurt feelings, but that their hurt feelings don’t affect what I think. The response they actually want is “I’m sorry, I’ll stop,” of course! And evidence that their hurt feelings *do* affect what I think. I’m working on all of that…
Sounds perfectly reasonable to me – if someone tells you to say what you really think then how could they possibly complain when you do! People are weird. And highly illogical.
They are, though I’m understanding people better these days. With a lot of work! I don’t often have total “Spock” moments, but that was one of them. “Captain, why is this argument proceeding illogically?” “Look, Spock, she doesn’t *actually* want you to say what you’re thinking. She wants to ask you to say what you’re thinking and then, when you *don’t* say it, she knows you value her feelings more than your rigid desire to express what you perceive as the truth. Except I’m Captain Kirk and would never actually use sentence structures this formal.” “Accurate, Captain.”
It’s life Jim, but not as we know it!
I hadn’t even thought about how I handle strong negative emotions towards me – I’m like you, I shutdown and retreat inwardly. I can’t cope with confrontation – I’m not sure if I’m scared of it (possibly, because I grew up scared of my parents, my mother in particular) but I’ll barely say a word. And then afterwards I’m so frustrated with myself and go through all the things I’d like to have said, and rant.
Ugh, yes! I’m “cold” or “dramatic”? Which one is it, people? Ok, I actually understand when people think I’m both, but seriously, it sounds ridiculous, right? As much as we autists are accused of not reading people, I know quite a few NT’s who just push and push me to my limit and then look very surprised when I’ve reached it. I tend to use my husband as a sounding board as well, but also just talk it out in the shower, because I don’t want to burden him too much. Totally relate on the extreme crying in other people thing, too. And I worked for an arts school that regularly held purposeful meetings to evoke that response in people! I was highly pressured not only to participate in sympathetic ways, but also was castigated for not “sharing” by curling up and bawling on a regular basis myself. I did sympathize, I really did, but yikes was that awkward! I could never make it happen the way they wanted, nor did I ever want to. If I do cry, it’s personal and private, thank you very much. If you cry, I care, but I’d rather – always – take action than sit there and pat someone. As far as “let it all out,” they tend to think I’m doing that when I’m really holding back, so well, I always hold back as much as possible. It’s not that I’m angry so much as I am very good at cutting through the shit and getting to the source of the problem with very little if any elegance. I always try to be as diplomatic as possible. I was still told that I have an anger problem, but I think that’s a misunderstanding. Neither frustration nor dogged persistence in dealing with a problem is necessarily an expression of anger.
That sounds something like a form of therapy I did once (actually more than once). If, at the end, you weren’t unfurling yourself from three hours of rocking and wailing in the fetal position, declaring a breakthrough, you were doing it wrong. I don’t think this was what the founder of this therapy had envisioned for his work, but that was the culture that was fostered in the groups. Or maybe I took it up wrong 🙂 Either way, I see now that it was excessively emotional for me. And even though I know it helps some people it freaks me out to this day.
That reminds me of a acting therapy group, where I participated, only once. 🙂 We were supposed to circle around the room barefooted in contorted moves to ‘find ourselves’ / our selves, ended by a ‘primal scream’, I guess to indicate some emotional rebirth (or when we stepped on a pin?). I refused to do so (of which I am still proud), was castigated as uncooperative (which I could life with) and became fully freaked out by the screams of the others who did as they were told. Just picture. Either this was something for ‘hidden camera’ or bizarre or just beyond me. 😀 Anyway, more fun than your experience.
I’d happily take the uncooperative label instead of doing all that! I’m obviously far too repressed or something but there’s no way I’d ever be able to prance around and shriek in front of others.. I could possibly manage some primal swearing when I stubbed my toe on something but not sure that would be so acceptable.
I didn’t do shrieking, but I did get led around a small wooded area (on the property where the group therapy was taking place) while blind-folded. Some poor guy came by for another reason and thought he might be a witness to a kidnapping! I was desperate, young, and depressed, and it was my mother’s chosen form of therapy. It possibly helped make me more emotionally literate than I might otherwise have been, in that I learned more words for various feelings and was given some guidance on how to identify them. It definitely wasn’t as fun as a room full of actors screaming their heads off though!
God that just sounds scary to me! Mothers have a lot to answer for – although mine disagrees with any sort of therapy and prefers the ‘bottle it all up and don’t tell anyone because they might judge you’ approach. I’m not sure which I’d prefer. Though I find being unable to see quite terrifying so anything involving that is a no-go.
I’m guessing that the idea of blindfolds is that it makes you focus on emotions within you rather than external distractions? Though I’d just be thinking ‘I’m going to fall over and hurt myself really badly and be stuck in a hospital….’ and panicking…
I can laugh about it now… 🙂 It also made me realize what works for me and what definitely doesn’t.
I think humanity, in general, has a lot to answer for. The society I grew up in was very much of the ‘bottle it all up’ attitude (I think in England it’s the ‘stiff upper lip’, and in Ireland it’s ‘bearing your cross’) and I’m grateful to my mother that she didn’t agree with that thinking at all, because she saw the damage it could do. I think she may have gone the other extreme though, on occasion, and therein lies the problem with so much of humanity for me. We don’t do moderation it would seem. We overcorrect, and make brand-new problems, or old ones with new, terrifying twists. Over the years, she taught my father how to be more emotionally available, and in hindsight I think he, once he’d figured out the rules to all that listening malarkey, achieved a pretty good balance.
anonymous answers:
Q1: I do not have any trouble traveling away from home, but prefer to be in control of the lodging, transportation arrangements.
Q2: I have not traveled abroad.
Q3: Experienced high stress in crowd at check in counter and flight security because I had not flown in 15 years. Very much sensory overload and too many upset people who were waiting – I became upset not only for myself, but in empathic way for everyone else. I flew first class, short flight, and will always try to fly first class (less crowding and very quiet).
Q4: I do self-talk (sometimes out loud to myself if no one is around to calm myself down.
Q5: I was just diagnosed two days ago at age 50. I tried other avenues including medication for depression and anxiety and ten years of counseling and am finally correctly diagnosed. My motor skills (clumsiness) are more pronounced now and my inability to read social cues affected my job performance, so I had to get answers from a professional (PhD Psychology specializing in learning difficulties and autism spectrum diagnoses in adults and children).
Q6: I do not believe I am alexithymic. It is very hard to support someone going through a difficult time if I cannot solve the problem from a practical point of view. Usually I try to change my tone of voice and show a nurturing affect to try to help them.
Q7: I have a job.
Q8: Not applicable. (I am post menopausal)
Q9: no
Q10: No
anonymous answers:
Q1: I once spent three days at a friends house – when I got home all I wanted to do was curl into a ball and sob. I ended sleeping roughly twelve hours that night, and was out of sorts for about a week.
Q2: No idea, I’ve never traveled. Although when my grandmother suggested me going to New York with her and a group of other people just the thought of it panicked me so much I burst into tears right there and then.
Q3: No idea. The idea of flying kind of scares me, although I would love to visit England and Ireland someday.
Q4: Breath deeply. Close my eyes, stand stock still – sometimes I’ll clench my fists and tense every muscle I can and then relax as I exhale, opening my hands and allowing myself to slouch. Rocking back and forth either while standing or sitting is another, almost unconscious comfort thing I’ve discovered I do when under stress.
Q5: If anything, I think I’ve kind of ‘outgrown’ my AS. I was pre-diagnosed as AS after being taken in to see why I wasn’t talking, and I struggled with it when younger but now I feel more balanced, and I don’t think I’d be diagnosed Asperger’s anymore, if that makes sense.
Q6: I write. Very often. Sometimes I’ll do two to three entries in my journal in one day, depending on how well or how badly the day is going.
For supporting someone – I either just stand there feeling like an idiot, or sit next to them hug them, rub their back, that type of thing.
Q7: Imagine I’m doing something else, like, helping Sherlock research a case or something like that. (I love Sherlock Holmes) I find that if I can channel what I need to get done in a way that connects it to something that I actually like/enjoy then I am more apt to do it, get it done, and actually enjoy doing it.
Q8: I tend to be more sensitive to noises, and touch. Another thing that aggravates my sensitivities is sugar – I find that if I eat a lot of refined sugar products, like ice cream, chocolate, cake, pies, even an excessive amount of white bread not only will my cramps be very, very bad, but I have a hard time coping as well as controlling my temper and tolerating things that I can normally do okay with.
Q9: Yes. This is easier for me because I find I have a wide range of obsessions in one field – TV shows and movies. A while back I was obsessed with Supernatural, although I have never watched it, and I knew a lot of trivia about it. Then I was obsessed with Dark Angel, now I’m obsessing over Skeet Ulrich – mainly his characters in Jericho and Miracles. I don’t know that I shift obsessions because it gets too intense, although I have had to pace myself with Sherlock on several occasions, I think I just get kind of bored.
I’ll research everything I can about a show, or an actor, but over time I forget it or can’t recall it quite as easily so I move on to something else OR an older obsessions comes back, like Jericho. We are currently re-watching that show and I am obsessing about it all over again.
Q10: I have never had to take medication like that.
anonymous answers:
Q1: Traveling is harder for me. Same here, I like to be home at night and same, like to be close it, too! I can get through it if I’m away and usually am glad I went wherever I went. It depends on where I’ve gone. If I’ve gone to an amusement park or noisy place, I need a day or two to get over it. If we’ve gone to the beach, I could stay there a longer time.
Q2: I traveled overseas last year. Two weeks before my trip, I was an anxious mess. Once we got there, I checked my brain at the door! Otherwise, I wouldn’t be able to enjoy it and for my kids’ sakes, I had to try my best to enjoy it.
Q3: Last summer our flight was 6 hours. The worst time is take off, that feeling of the plane taking off. I have to read or watch programs to forget I’m in the air.
Q4: I have to stop somewhere and breathe. I wish I had better coping mechanisms.
Q5: I’m not diagnosed, it’s hard to tell.
Q6: I write it out or I eat. I support others going through difficulty by listening, just letting them know I’m there. I stop and ask myself what I’m feeling to get to the bottom of my feelings.
Q7: I look through job listings and look for words that interest me in a job.
Q8: Not really.
Q9: Yes! I do. I have to take breaks from it because it consumes me!
Q10: No.
anonymous answers:
Q1: I can go on long trips but the worst part is that I have a very hard time sleeping in hotel rooms due to the scratchy bedding, hallway noises, noisy heatpumps, etc.
Q2: I have not traveled enough to know
Q3: I have a special interest in aircraft so that mitigates issues somewhat. The people at the airport bother me as does the engine and air circulation noise. Sitting still for long periods without being able to pace (my major stim) is an issue. Accidentally caused a panic on one flight by telling the flight attendant I could see the shadow of the shockwave (which is completely normal in certain lighting conditions on high-subsonic flights).
During long ferry trips (I live on Vancouver Island) I pace for pretty much the whole trip.
Q4: Cope?
Q5: I find that I am better able to recognise my issues before they become severe, and to deal with things that I didn’t know were agravating factors when I was younger.
Q6: Nope…
Q7: Ugh. Most of the time when I have been job hunting I have ended up being hired by people who have seen my work elsewhere or where I had an inside recommendation – the time that was not possible was a hard slog.
Q8: not applicable – normatively presenting XY
Q9: Yes – I obsess more than I actually work on it after a while – this has caused me to fail entire university courses.
Q10: Nope
1) I have struggled with this in the past mightily. Going away to college was an ordeal. I skipped all my orientations and locked myself in my room. I am very anxious and nervous about travelling to unknown places. I have an extreme issue planning and being organized for trips. My estimation of my own tolerance of the stress of the trip is poor. I plan as if I am Indiana Jones, then I become Homer Simpson on the morning of the trip. I also deeply misplace faith in the functionality of other factors (airport buses, flights, trains etc) that I intellectually know are not reliable even on a good day.
2) Never traveled outside of the US.
3) If I’ve managed to not completely destroy my trip by the time I get past the NSA check, I will be fine mentally. Planes are uncomfortable to sleep in and way too loud, and I must get up and walk around the cabin due to other medical issues or I severely risk a DVT/Embolism . I require an aisle seat for that purpose.
4)I practice meditation, self awareness and breathing control regularly, Helps a lot.
5)Odd question. Do you become more or less autistic as time passes? I think your born as autistic as you’re going to be. Your sensory experiences change as you age and stress and trauma affect you mentally. That is part of the human experience and not unique to autism. Coping strategies come from experience or assistance/therapy, maturity comes from brain development and life experience. We experience this autistically, and may have unique behaviors from NT counterparts, but I don’t believe a brain becomes more or less autistic. Behavior may change and distinguish you as autistic because you don’t have a coping mechanism for the altered stimulus or you are just flat out exhausted from stress. I don’t like the concept of becoming “more or less autistic”. This concept is embraced by orgs such as Autism Speaks who claim that “high functioning” individuals have outgrown autism and the need for support and that individuals who have the ability to protest them are not a part of the conversation because they are “less” autistic than the people they falsely claim to advocate for. I don’t mean to derail this post so I will stop now and continue with the survey.
6) I tend to go way overboard with my strong emotions, and I struggle to communicate or express milder emotions. This gives off the impression that I’m in the same mood 95% of the time unless I start crying with joy or screaming and swearing in rage suddenly. I start to shake either way.
As far as supporting someone else emotionally. I’ve found that they want to vent most of the time and for you to listen and reassure, and not to judge. I find it more difficult to share in positive emotions with others, especially if that positive experience will result in an unplanned and sudden party, celebration or social occasion that I will be expected to attend.
7) You mean what I should be doing RIGHT NOW! 🙂 I have been unhappy in my current job for years and screwed over and fed up more times than I can remember. Not to mention that physically, due to other disabilities I should not be doing it at all. Yet I slog on because I fear change and what would become of me. Motivating myself to job hunt needs to be a priority.
8)I am one of the 50% of humans that don’t menstruate, sorry.
9)I find that I should stop, however I find myself unable to do so. I have read, watched things repeatedly or listened to the same song or just thought to myself right out of a nights sleep on many occasions. Eventually it ends. If its music I’m obsessing over or just a thought and its during the day I can just take it on the road with me, or sing or hum it all day to my coworkers delight. I find that human interaction can break a perservation so going to work may be the cure if its something unhealthy I happen to be obsessing over.
10) Never taken them
I thought your point on question 5 was very interesting. I never considered it that way.
I think number five is meant as “showing more autistic traits” or “regressing more in sub traits”
like short term memory, sensory overload ect… I also believe you are born autistic and stay that way…but I know that as I age I am finding some traits to particularly regress or stand out…and others I have learned better coping skills for so for outward appearances seem less…but my autism stays the same…if that makes sense?
That was my question and I see that I should have worded it better. I did mean it in the way that you interpreted here and not literally.
I interpreted the question, and answered it accordingly, as how I experience my ASD traits, and my autism in general, over time. A subjective account, as opposed to an objective one. It is interesting (in a horrifying way) to learn of organizations peddling the idea of a cure or being able to grow out of it. The day after I came to the conclusion that I was most likely autistic there was an Autism Speaks advertisement on the radio. I would have been disgusted at the overly emotive, manipulative (in my opinion), language anyway, but that day I took to screaming at the radio ‘It’s not a bloody disease!’ My husband agreed wholeheartedly.
Uhhh, ohhh, sorry for the misleading formulation of number 5 for which I take full responsibility! The backbone of the question came from Cynthia (musingsofanaspie) but she adopted my formulation to the same topic several comments below her own when collecting material for the survey.
I should not have used ‘indirect’ language like I did, still have a lot to learn. Of course I never wanted to imply at all that any of us gets more or less autistic with age for real! I absolutely detest ‘Autism speaks’ and the likes of it.
Trying to reformulate: Do you *appear* more autistic to NTs you have to interact with because either (i) you take voluntary steps in that direction or (ii) because the energy you can invest to cope becomes limiting with age, whereas the level of exposure to NTs (in the workplace in my case) stays the same (= I fit less = life more like a hermit in my free time over the years)?
May I ask for your forgiveness again? I am aware of the important differences in the use of language. As a partial excuse, I type most of my comments (not this one 🙂 ) around midnight local time.
I think I handled this question badly in general and I apologize for making it unnecessarily confusing. I combined my question with yours and possibly one other, which combined with the indirect language made it hard to answer for some.
In case anyone is wondering, the main reason I’ve combined some questions is that Survey Monkey only allows me to put 10 questions on a free survey and I’m trying to get in as many people’s questions as possible while keeping the number of surveys manageable and sticking to loose themes. It’s been a bit of logic puzzle.
It made no difference to me – I tend to answer the questions that I have answers to and if I’m lucky they match the actual question being asked 🙂
Yes, A$ frequently makes me want to scream. 🙂
The conversations that crop up because of misinterpretations, whatever the cause of them, or simply different interpretations are often very interesting. In a setting such as this, where people appear to be very open about their perception of things, I don’t mind indirect language at all. I also find that I can think I am being very direct when I’m talking but still, somehow, I am frequently misunderstood.
Furthermore, if there is a misunderstanding, or something is open to interpretation, I tend to hold myself responsible. I assume it’s my brain not picking up (or conveying) the information correctly, and nothing to do with anyone else 🙂
Agreed; I find it interesting the different ways things can be understood/interpreted, when it’s not going to cause an argument.
I’d disagree on your idea of always being solely at fault for misunderstandings. My parents communicate differently, and growing up with that I learned pretty well to be able to tell when they were talking about different things or understanding things differently, and I’d say it was split pretty evenly with who was misunderstanding the other or not communicating clearly.
I’ve also noticed a couple things about NT communication. One is that they either don’t notice the misunderstanding or they decide to go on in the conversation without fixing it, which can cause bigger problems. An example of the latter sort that I really don’t understand is when they receive a text from an unknown number and then proceed to respond to it as if they know the person, rather than just saying it’s an unrecognised number and asking who the person is.
The other is that I know I pay more attention to word choice and exact meaning than most people while everyone else seems to just want to grasp the bigger picture of what you’re saying. And they think that’s good enough for proper communication. I know I annoy some of my friends with asking for clarification and exact meaning so often, but the ones I’m closest to know that if I don’t, we can both end up confused really quickly. While the lack of understanding intended meaning can be on either side, I’ve found that it does help to know how my communication differs from the norm and to be able to try to compensate for the differences.
Cin Vhetin, I agree that my way of blaming myself for miscommunication is not an accurate reflection of reality, nor is it healthy. I think I devised it as a coping mechanism. I couldn’t seem to convince others of their part to play in the misunderstandings so it seemed easier to hold myself responsible. I can do something about my ‘incorrect’ behavior, but unfortunately not other people’s.
Grasping the bigger picture is something I did during this time too because I was embarrassed at how little I seemed to understand when some people were talking to me. I figured it was good enough just to get the ‘gist’ of their meaning and not appear rude, and this became a habit of mine. And yes, the misunderstandings this can create are immense. Now, I have reverted back to a more pedantic use of words, and I take my time with sentences, and I make sure to clarify anything that I felt was vague. I think my husband found this a little disconcerting after ten years of seeing the other method of communication, but I told him that pedantic is how I have to be, at least for the moment. I don’t have the energy for mopping up any more miscommunications.
I would just like to say that since self-diagnosing, I have rediscovered a couple of old special interests, namely: Elvis; and taking surveys. I was so excited when I saw this survey this morning that I forewent my anticipated lie-in and, literally, leapt out of bed. I love how I can share that here!
1. This is a tough one to start off with (or maybe it’s just because my brain needs more time than I’m giving it today to get chugging in the morning…). I love the idea of travel, most definitely. I become somewhat overwhelmed, then upset, by all the places in the world I am never going to have the time to see. I am also very impressionable. I have a list of places I want to go, and also places that I have very little interest in, but I can meet someone, or read something, and that will all be completely subverted and then it’s a case of ‘I HAVE to go to Norway. NOW’. That does not mean I will go, ever, but I’ll definitely obsess about it and read everything I can about the city or country for a while. I might even think I can learn the language, even though I am terrible at foreign languages (I’m not sure I’m very proficient at speaking in my native language sometimes).
As for the actual traveling, however, it’s a hotbed of anxiety-inducing tasks for me. I cope by planning meticulously and overestimating how long it will take to get everything done so that I am never caught short on time, but then I get very upset, even have a small meltdown, if something happens to interfere with even a portion of the plan. I am the person who is at the airport gate an hour too early, but at least I can relax then. Mostly. In reality, much of what is involved in traveling is very challenging for me. I’ve just learned to see the anxiety as worth it – the rewards are so great. I do not sleep very well away from my own bed, however, and this has definitely gotten worse with age. The destination also has to be something very desirable. I try to avoid repeating destinations, because I usually need the stimulation of some place entirely new to get me through the stressful parts. I also wouldn’t like to do a lot of short weekends away, which is popular (and cheap) in a lot of Europe. That is just too much hassle and adjustment for only a few days’ experience.
2. I am not sure exactly, but I was surprised at how much I adored Japan and I recognized even then it was because I was expected to look and feel like an alien. I was very anxious about going to a place whose customs were so unfamiliar to me, where I knew none of the rules, none of the language – afraid that I would end up causing horrendous offense somehow in my ignorance. Yet, I felt a sense of peace there because it was accepted I wouldn’t fit in. Also, in my experience, Japanese people, especially in Tokyo, do not stare. They never reacted to any of my faux pas (I know I made them), and as long as nobody says anything to me I can remain blissfully content that I’m okay, I’m not a freak, because in my own head I feel perfectly normal. I’ve heard Europeans complain that in Japan you are always treated as a foreigner, you are never accepted as one of them, and I found this kind of funny, because try feeling like that in your home country, or in your own family. Try feeling that everywhere, almost every minute of the day. The statement always struck me as borderline naive. I was part incredulous, part envious, of what it must be like to feel so comfortable in one’s own society, in the small chunk of world they just happened to be born into, to feel as if you are in the majority.
2b. I am ecstatic about the mention of autistic people feeling comfortable with cross-cultural relationships. I have always felt an affinity with those who come from somewhere else – the farther away the better sometimes. I grew up in a (to my mind) startlingly homogenous society (my Mum was foreign and that was a big deal), and it was something of an achievement to find a young person from another country in my area, but I always had at least one international friend growing up. My family teased me about discriminating against native men when I started dating, and my husband’s immediate family have a long and varied history of migration. I could never empathize with people who had negative things to say about, or who had negative experiences of, immigration and migrants. Not only does it seem to me an inevitable byproduct of the human condition, I think it’s great! My life, and my home country, are a lot richer for it.
3. I am afraid of flying. I used to love it as a kid, but now I’m afraid of falling from the sky. Turbulence will make me sob. I used to never watch in-flight movies, not appreciating the distraction, but now I watch as many as possible. I can read on all forms of transport – I can read anywhere in fact – except planes. I cannot concentrate on words with all that’s going on, with all my head is trying to process regarding the flight, the trip, my life…
4. I do not have panic attacks. Just meltdowns. I don’t cope. I avoid.
5. This is one of the many hints that made me stop to consider that I might be ASD. My spoken language appears to be getting worse. The same can be said of my face blindness and sense of direction. My spatial reasoning is flipping out more too. I don’t know if it’s just because we are now driving on the other side of the road and this has made me aware of just how poor it is (I have eye problems so I’ve been aware of the problem’s existence for many years), but I am constantly flinching in the passenger seat of the car when my husband is driving. It’s not just being a backseat driver (I love being a passenger and my husband is a far better driver than I am); I am convinced every single time he is going to hit something when he pulls into a car space or has to change lanes in heavy traffic. As to the cause of my supposedly worsening traits, I am not sure. I am tired of passing? The brain has a tendency to deteriorate with age anyway? I am tired because I’ve just moved continents? My brain has, in fact, gotten smarter and realizes it needs to distribute energy wisely and it’s trying to tell me to stop focusing on my weaknesses, that they are always going to be there so just chill out?
On the other hand, I feel like in many ways I am coping better with life in general. Again, there are lots of reasons for this. I became very adept at passing, and those areas where passing made me burn out, I just opted out. I was lucky enough to have that choice.
6. I don’t cope well with strong, negative emotions. They are like poison inside of me. And IF I let them out, they are poison spewed at another person. I really cannot make sense of alexithymia yet, and how, or if, it applies to me. I don’t know if I’m just very well trained, if I grew up in a very emotionally literate household (one parent, not the other), if the professionals are conceptualizing emotions and empathy in the population (NT and ASD and everything in between) wrong, or if I am ‘instinctively’ good with emotions (in this case, other people’s). I’m not even sure what they mean by instinctive. Isn’t that usually just a behavior learned so well our brains don’t even register that we’re processing information – it just throws out a reaction? Isn’t most behavior learned at some point, even if much of the population is too young to remember it? Typical children learn to empathize, then it becomes instinctive. But apparently if an ASD person learns a behavior so well the reaction becomes automatic, it’s still just learned, and is of lesser value…
I think however that to four or five people I am very emotionally supportive. I know these people very well. I ask them what they need from me, or they tell me what they need from me, and I provide it. It’s not always easy, but I don’t presume competence in this area and I think that’s a good thing. I don’t think NT people have the upper hand on being supportive, personally, at least not the (presumed) NT people I know. I do like to ‘fix’ things but I’m getting better at sitting on that or letting it come out in small, hopefully benign, ways.
Outside of this small circle, I’m probably a bit clueless, but it really doesn’t bother me. This is why I don’t get close to that many people, why I drop attachments as needed, because it’s very important to me to be emotionally available and capable to those I love, and that takes a lot of energy. Emotionally unstable, or unpredictable, people send my brain into bad places. Also, to people I don’t know very well who are in distress, I will say almost anything to stop the pain (theirs and mine), which can lead to saying things that are not very appropriate or leave me quite vulnerable.
7. I don’t. I will have to soon, and it terrifies me. It might be the closest I get to panic attacks. I don’t like being around people. I don’t like other people’s rules or routines. I do NOT believe the customer is always right. And I don’t know how not to feel a constant sense of failure because I am not perfect and I desperately want to be.
8. I have an unusual hormone condition. All the parts are there, the brain just didn’t want, or know how, to produce hormones. I’ve never gone through puberty, though as my ob-gyn said ‘But you look so NORMAL from the outside’. I always thought people who said they got hormonal were using it as an excuse to be moody, but then I experienced it on the Pill a few times, and it is very much real. I don’t think it affects my ASD, but I do wonder if there’s a connection: brain firing in a different way, and all that. I at least wonder if a diagnosis of ASD might help me better investigate this condition.
9. Special interests wax and wane, and some of them fade naturally. A few, however, do cause me to overload, and I shutdown. I may have taken in too much information or the emotions the interest stirred might be too much to process at that moment, so I retreat for a while. Sometimes forever. The subject of autism did that to me yesterday morning, but clearly I bounced back 🙂
10. I have to be careful with most drugs, because it seems to interfere with my hormonal condition. I took anti-depressants for a month several years ago, and they numbed me nicely for two days, which bought me time to prevent a serious meltdown-come-breakdown, but after finishing the pack, I decided they had outlived their use already. It’s part ‘I do it by myself’ and it’s part ‘I don’t understand EXACTLY how you are affecting me physically, so I’m not going to take you if I don’t absolutely have to’.
This has been a joy Cynthia. Thank you so much.
I love taking surveys too! I once signed up for an online program where I got paid to take surveys. It was only a few dollars per survey so a very poor return on time but so enjoyable and I liked redeeming my “points” for gift cards to treat myself. I wish I could remember how I found it or what it was called, because I have a feeling someone here will ask. 🙂
I was actually just about to…
Your excitement has made me smile 🙂
I got excited yesterday knowing it was survey day. And then I got to leave the email sitting there so I could savour the anticipation!
And I’m rediscovering old interests too – I bought a microscope yesterday, had one as a kid and decided to get interested again.
Oh a microscope! That sounds like fun. I’m also starting to think about all the interests I don’t have, or haven’t fully developed, yet. There are so many possibilities…
Information, and obtaining it through reading, is my greatest interest, as well as being how I express and explore a specific interest. Sometimes I go online, think of something I want to know (could be the plot line to a movie – anything), and google it, just so I can get some information into my brain. My problem now is that years of social training – not to mention four years of undergraduate Sociology – has made me feel as if I have to respond to the information I’m reading. I feel as if I have to have an opinion, and if I have an opinion, I possibly have to take action, especially if it’s a social issue. And I love to read about social issues, and current affairs. Also, I feel as if I have to know everything right away. I have to have ALL the information, and it has to be the most up-to-date, the most reliable. This is such an impossible task that my brain says ‘Nuts to this. Let’s just look at pictures of cute kittens and read funny stories about poor customer service’. I miss the days when I just read, when I enjoyed learning. I was a bit of a history buff when I was younger and talking to my (now deceased) Dad, who may have exhibited some ASD traits, about the World Wars and Stalinist Russia was one of the few ways I meaningfully interacted with him prior to my teens. I miss that exchange of facts, that academic exploration of cause and effect. I miss having someone to be a nerd with on one of my most favourite special interests.
Well, this got morose. Sorry for that. It’s been a tougher day than I think I realized. Having this new filter with which to view myself, my relationships, and my childhood has been, in many ways, wonderful, and a huge relief, but it’s also emotional.
Tell me about it – there are so many topics that I’d love to learn about. I’ll read something, think ‘oh wow, that’s interesting’ and then want to go buy a book on it! Result is a lot of bookshelves, a lot of books as yet unread, and a feeling of excitement every time I think about them!!
I’ve also got a strong desire to get my Lego down from the loft and play with that again. Someone on here mentioned it and having recently bought a Lego boat (with sharks – another of my interests – new book ordered yesterday!) on a whim, I was yesterday looking on Amazon at all the new sets they now sell. Given that I’m planning on ditching some clients it seemed sensible to refrain and to get to the existing stuff down to play with instead. Why buy a new castle when you have the pieces for one in the loft! (Well, the excitement of ordering it, and getting the box and…)
I sometimes wish I had someone to be a nerd with. That’s kind of the only reason I can think of for having a friendship or relationship.
(And yes, it can get emotional. But oh so reassuring too!)
Sharks are fantastic creatures to study. I’m a little predictable I fear. It’s Great Whites all the way for me. It started because they scared the living daylights out of me, but now I see a peculiar kind of beauty in their monster-like appearance. I am compelled by that which originally repulsed. I think I found some new reading material to add to my (also busting) bookshelves.
Friends are great for nerding with. But I am finally realising the potential of online communities (I come very late to most parties) and the kind of mutual sharing possible there that can be very hard to find elsewhere.
I’m with you on that – I mean, sure there are other sharks out there, but really when you say shark you mean Great White. I’ve got a lot of shark movies (some good, some bad, some quite frankly that don’t deserve shelf space) but the best is Jaws. That is a classic film in every sense. I’ve watched it so many times (I also have a big canvas picture of it and the original book – which differs) and never get bored of it. And I’d say that Jaws 2 is a very close second. Oh god, I may have to watch them again this weekend! Numbers 3 and 4 though – entertaining but so not in the same league. For starters (you’ve got me going now) there was practically zero continuity going into No 3. And I don’t like Michael Caine so his presence in No 4 wasn’t welcome. But to be fair they did have the mother and a couple of other characters from the original. Which has got me thinking about empathy – I do feel, every time, for the mother of little Alex who died in the original. She just stands there looking devastated on the beach…. But it’s worse when the dog dies (off-screen thankfully) in No 2 – I have to sit there going ‘it’s just a film, the dog isn’t dead, it’s just a film, the dog isn’t dead’…
I could be here all day 🙂
And you’re right about online communities – you can connect about so many different things. I could never even begin to waffle about Jaws etc. to anyone in my offline life…
My husband recently bought a microscope and we’ve been enjoying playing with his new “toy”. It’s a huge step up from the one I had in my science kit as a kid. 🙂
It’s great isn’t it?! Somehow toys are wasted on children – it would be much better to send kids out to work and let adults stay home and play 🙂 I’ve now got my Lego out of the loft and am hoping for a cold wet day to enjoy snuggling down making stuff again!!
“I have a list of places I want to go, and also places that I have very little interest in, but I can meet someone, or read something, and that will all be completely subverted and then it’s a case of ‘I HAVE to go to Norway. NOW’. That does not mean I will go, ever, but I’ll definitely obsess about it and read everything I can about the city or country for a while. I might even think I can learn the language,”
I can totally relate to this. I take this to extremes. Most of my special interests have been about foreign countries and music, I suppose due to the fact that I’ve never felt that I completely belonged in my own culture. It usually starts with a song I hear from another country in another language that somehow captivates me, and then it suddenly becomes my life’s mission to learn everything about that country, it’s music, and the language. I even took up teaching English so I could go, live and work in the country that had become my passion. Now, whenever my family learns that I have started learning another language, they immediately begin to worry that I might be about to emmigrate again 🙂
That kind of sounds a bit like my father-in-law. He’s moved around the world with work – mostly by choice – so much that the last time I joked to my mother-in-law she should get him to sign a contract saying that they would stay in that particular country for a minimum of five years; she was so sick of moving!
I never felt I belonged anywhere, and as my culture was in my opinion quite a conservative one, I definitely didn’t feel I belonged there. I envy you your proficiency in (or determination to learn) foreign languages. My husband and I made a list of the languages we feel we should learn so that we can move countries easily (we’re thinking on a five-year cycle), but I have a hard enough time communicating in English, my native tongue, so the idea frightens me. He, on the other hand, grew up bilingual.
Yes, I think my family would have me sign a contract too – but I don’t think I’ll be making any more moves, mainly beause I’m now aware of the issues behind the compulsion and I’m getting older and not so good at handling stress and unheaval.
I have a good head for vocabulary and grammar rules, but I have a lot of confidence isues when it comes to speaking and it takes me a while before I can speak even though I may have a good passive understanding. Someone else here said that learning a language is like fitting the pieces together of a jigsaw puzzle, until eventually you have the whole picture and can understand the language, and I that’s what I like about it. I envy those who were brought up bilingual.
anonymous answers:
Q1: I usually get sick when I’m away. I always thought it was because of the recycled air in the plane but now I’m wondering… Yes, it seems to be getting worse as I age.
Q2: No
Q3: I take an Ativan for anxiety before I fly. I listen to my favourite music on my iPod and close my eyes to keep stimulation to a minimum.
Q4: I tell myself I’ll be alright and that the panic attack will pass if I just let it happen and let it play out. Knowing it is a part of being autistic has been an immense help to me.
Q5: YES!! Thankfully, coping has become a lot easier since my diagnosis and I know what is going on with me. It was much, much harder when I had no idea I am autistic.Q6: I usually withdraw completely when I am experiencing strong emotion. I find it extremely difficult to help someone else going through a hard time and usually get away from them as fast as I can.
Q7: I don’t look for jobs.
Q8: Not applicable
Q9: No
Q10: Not applicable
I frequently got sick on trips away from home when I was younger and it was always mysterious illnesses with vague debilitating symptoms (severe headaches, high fevers, weird muscle cramps/pain) that would clear up soon after arriving home.
anonymous answers:
Q1: yes, I get extreme extreme anxiety about the thought of being away from home even for too long during the day, yet alone overnight. as a kid i didn’t really have this problem, I suspect because adults were both situationally and legally responsible for me, and would pretty much always provide for my needs. but now i worry about not having everything i could possibly want or need while I’m not at home, and I don’t even have very specific food needs at all or anything like that. it sucks and is getting worse with time.
Q2: i find it easier to move to a different country (I’ve lived in 4 over the past 4 years) than to spend 2-3 days away from home but in the same city. i don’t know why that is.
Q5: i feel more autistic with age for sure. and i have almost no energy to do anything at all. [drugs cw] i can’t tell whether this is because now i smoke cannabis which REALLY helps with my sensory processing issues, helps with my anxiety, and helps my brain slow down/level out enough to communicate thoughts with others, but maybe comes with the associated effects of being tired and unmotivated. but so does being a self-sufficient autistic adult without support so who even knows?
Q7: i am only able to job hunt when i am literally in danger financially, and even then usually ignore a lot of phone calls from prospective employers due to anxiety that I can’t combat no matter how hard I try.
Q8: I can’t determine whether menstruation itself or it occurring to me as someone who experiences genital dysphoria is what results in me having a gross loss of energy, executive function, and processing ability, but that happens.
Q9: my special interests are usually people which had caused me an immense amount of problems throughout my life. oftentimes ill get so obsessed with them that I actually realize how creepy I’m being and then I break down and try to forget them for a while.
This reminded me of this one special interest who was a person. It was the first (and so far the only) time this had happened to me, so it really freaked me out, and that was the one time I did take steps to try and stop the special interest in its tracks. It didn’t do THAT, but it did speed up the arrival of the less intense/obsessive stage (see my answers above)
I’ve had that and it’s much harder to cope with; it really got into my head and threw me…
1. I like my home but I enjoy holidays in my own country. Once I am on holiday I get attached to the place I am staying in. I have favourite places I go on holiday year after year and do the same things – a home from home, this is my favourite type of holiday, full of things that are different to home but all of them familiar.
2. I can pass for NT at home, I have always felt anxious in other countries. The fact nobody minds if a foreigner is different does not help me, I need to understand ‘the rules’ in detail. I am getting twitchy just writing this!
3. I no longer fly as I knew one day I would have a massive panic attack and never fly again, inconvenient if it happened on the outward flight. I have done long and short haul in the past, I found the point of commitment when going through the door of the plane a big moment of fear. Once inside it is so full of people and claustrophobic. I flew first class once, it was a lot easier, you get on last, get off first and have space. I also hate the airport/checking/security thing, I feel like I am being processed.
4. I dont really know how I cope, not having a choice may be part of it. I get panic attacks much less often and very mildly compared to years ago.
5. My coping strategies have improved with age and experience. Diagnosis has meant I am a lot kinder to myself when things go wrong, it also means they go wrong less often as sometimes I know I have to keep my head down and keep quiet as my skills do not match a particular situation.
6. I am not alexithymic. People going through difficult times emotionally seem to value talking to me. This may be because I don’t react instinctively but think through my responses carefully. I find this odd as I have no experience of what people are dealing with but I seem to be able to organise and reflect their thoughts in a helpful way.
7. Job hunting has never been a problem for me. I am on my 15th job so staying in a job is my problem – in the past when a job got too confusing/overwhelming I would move on but the problems moved with me. Now I try (more successfully) not to get involved in politics and other aspects of work that are unsuited to me.
8. N/A
9. I dont have breaks from interests due to intensity but I lose interest if I have nothing to learn and there is nothing new to do.
10. N/A
1. I am wondering if travelling is hard for all Aspies as they age or if it is just me? I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here
I would rather stay home than travel, but I can cope with a new environment.
2. Is liking or disliking foreign travel related to ability to pass for NT at home?
I have made the decision not to pass, so it doesn’t matter.
3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)
The hardest part is trying to sleep but being unable due to being packed like sardines. My usual coping strategy is to distract myself by preparing a movie on a laptop ahead of time. I have never flown alone but I imagine navigating the airport would be a problem (I have topographical agnosia).
4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?
I had my last panic attack backstage before a play, about a half-hour before curtain. I ran outside into the parking lot and gave a hug to a car whose owner I had a strong attachment to.
5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?
There’s no such thing as more or less autistic. We have a continuum of diversity and everyone in it is 100% autistic. Coping strategies for every situation improve with practice; you discover what does and doesn’t work.
6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?
I’m good at hugs, not so much at kind words. My own strong emotions tend to result in sleep, music, singing, and good food.
7. How do you motivate yourself to job hunt? more details here
I consider the very low probability of actually being hired from any one application, and the anxiety disappears because the act loses importance.
Can’t answer #8 as I don’t menstruate.
9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?
My interests can only die down with time. I will not stop unless other commitments get in the way.
10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?
I have tried nefazadone, citalopram, gabba, and a stimulant patch. Only the patch seemed to have any effect at all, and even that is dubious because my increase in energy coincided with getting involved in theatre.
anonymous answers:
Q1: Due to anonimity, i find international travel easy but the destination has to be one of my special focus countries.
Q2: I believe so.
Q3: A big yes. Noise, smell, proximity to people & lack of physical movement are huge issues. Seat selection is critical in minimising this. Carefully selected personal items like music, moisturisers, sleeping tablets and food help a lot.
Q4: CBT assists enormously. I maintain control of where I go and why so I can avoid most triggers. I also see travel as an adventure so time and place dictates. This means in my head normal rules or routines can be broken for a bit.
Q5: Yes. but as my understanding, knowledge and life experience increased, I feel stronger and more determined to achieve balance.
Q6: Medication. Withdrawal.solitude.
Q7: I don’t. It’s too hard.
I earn money working in solitude.
Q8: Big changes. Identifying these changes as not being me but my chemical levels assists in dealing with them. Sensory. Issues are much more acute. Emotional instability is the biggest challenge.
Q9: Yes.
anonymous answers:
Q1: Traveling is difficult for me. I rarely take trips. I like my home environment. I have 3 dogs and do not like to be away from them. I guess in some cases I could take them with me, but that seems more of an interruption for them and for me.
Q2: I’ve never traveled outside of the country. I like seeing photos and learning about different cultures, but I guess visiting them hasn’t been a high priority.
Q3: It’s been a number of years since I rode in an airplane. Never been on a very long flights.
Q4: I do my best to take deep breaths and try to imagine a better place. I encourage myself that I will get through it. I guess it depends on the situation how well this works.
Q5: I think I have become less organized as I age. I used to be a pretty clean person, but have trouble keeping my house and car even to a minimal level of cleanliness. This may or may not be related to ASD. I’ve become more anxious. I am trying to handle that better. I think I have switched jobs or had issues at jobs due to anxiety and feeling like I had to do something else.
Q6: Sometimes, I just power through work and stay busy. then I usually explode later. Sorry, I don’t know what “alexithymic” means. I often become very upset in therapy and I’ve begun to trust my therapist to help me ground. I can call a crisis line that I have with my provider.
Q7: I need the money. I need the structure of activity. These things motivate me to keep looking, if I am not working.
Q8: I have never really considered this.
Q9: Have to think about that.
Q10: no
anonymous answers:
Q1: Travelling is hard. I can manage it if it’s for a week – 2-3 days to get used to it, then a few days away, then home. Longer, I get antsy. Shorter and I just don’t sleep (which isn’t relaxing at all, nor is it good for business). And yes, plenty of time to recover. Throw in some airporting and I’m sunk for well over a week!
Q2: It’s the stress of not knowing the foreign cues for sure. It’s exahausting to have to read people and figure out my actions. That said, while I’ve only been to Europe once, I found it pretty manageable because culturally I could relate, and they didn’t have many public rules. The country I was one was one of the more quieter/reserved cultures which worked very well for me, even with the language complications!
Q3: Yes. I can manage longer domestic flights than flights to the US because less rigmarole. So I can do up to 2 hours domestically relatively easily because I don’t have to arrive at the airport 3 hrs in advance. If a US flight, 90 min is ideal because by then I’m losing it.
Long flights are usually only for business, and I try to get seats with colleagues. Not to talk, but to feel comfortable/familiar/safe. Helps keep the anxiety attacks down.
On that note though – driving. Can’t do long drives. Feel the need to fill the airtime…. and they’re long and as crampy as airplanes….
Q4: Tell myself to sleep. Doesn’t work on the inside, but pretends calm well on the outside so others don’t see the panic/anxiety.
Q5: Yes.
I’m losing my coping strategies. Not yet sure why.
Q6: There is no coping. Just BLURGH. While alexitymic, also strangely empathic. I can’t ID the feelings, but I feel the feelings. Logic brain kicks in, but logic brain adapts to the features/characteristics of the people I know when I’m helping. Acknowledge their habits, and provide logic that suits those habits.
Q7: N/A – I create opportunities for myself. I’m a terrible employee.
Q8: Yes. Even less coping. 3 days of entire brain fog.
Q9: There are no breaks. Eventually brain bores of the extensive repetition and moves onto next obsession.
Q10: N/A
Regarding Question #5: My coping strategies improved as I aged, but only up until I had children. Then the added stress and anxiety over the safety of two small people exceeded all of my previously successful coping mechanisms. Both of my kids have been diagnosed with autism, and traveling with my children leaves me panicked that they might get separated from me in a crowd. I’m also exhausted by my efforts to keep them calm and to prevent disruptive behavior. It is my hope/wish/dream that these difficulties will ease as they get older, and that they will eventually learn to manage their travel issues more independently (and then I will be able to better manage my own.) Until then, I’m afraid travel for me will have to be endured rather than enjoyed.
1. Traveling has always been hard. I don’t sleep on planes, trains or in cars. I hate busses. I hate the traveling, but I really do love the exploring once I get there. I’ve been to nearly 20 countries. Stayed from 3 weeks to 10 months. The longer I am in a place the more I like it. 1 day in and out is really hard. I would rather spend a night. I don’t sleep in hotels the first night. 11 years ago when I started traveling for work, I discovered ear plugs. My husband doesn’t snore but breathes heavy. Ear plugs have been a god send. Food is hard. I have gotten much better at advocating, asking questions, and dictating my own travel terms. Sucks for everyone else, but I am much better. It has gotten worse for me over the years, especially with understanding plane delays and getting stuck in towns like Fargo when you actually needed to be in Minneapolis. The time, the crowding is not fun. Lines suck. Airports with good line science are a god send. I know I must piss the people off behind me, but i make a pretty huge gap in front of me so I don’t get too crowded.
2. I don’t mind other cultures countries. I pick up language pretty well so can get by. Since I like to watch people and take pictures, I just look like a geeky tourist with a camera that can say please and thank you in the host country language. Small tries at language goes a long way.
3. Yes. Because the airplanes are so noisy and vibrate I have problems. The hardest was my trip to India in 2006. 24 hours to get there with a layover in Frankfurt. Doing the planning, researching the maps, how when we will get there alleviates some of the stress. I help deal with Sensory overload with noise blocking head phones. This is only my 2nd year with them. iPhone/pods with music have REALLY helped me cope with I travel. My executive function is only passing because I have developed specific routines getting to my hotel. first thing is I get in take my shoes off and free my toes. Click down the AC as far as it will go and then “put away” my stuff in the closet and bathroom. That process lets me settle down. Then bar and then find dinner.
4. I rock and curl my toes. I’ve gotten to the point that I just end up having a melt down in public. Freaks people out but most are nice and ask if they can get you water.
5. I have spent so many years masking (I’m 47 now), that when I was finally diagnosed, at home I stopped trying to fit in. My coping has gotten better because I know that the rolling of the hands or toes is a sign of stress and I just let it happen. Also, I am getting better at letting my melt downs happen. Trying to prevent (read delay) only makes them works
6. Strong emotions come in like a fire hose. there is no regulation. I may completely close off (bitch mode) or start crying which freaks the NTs out. I have been working on how to express my feelings. I’ve been talking then crying and then tell my husband “this is happy or this is mad”. my emotions are very cross wired. The more I think about it, they are like those japanese water fountains. off kilter, fill with water and then dump it all back into the pond. I know it will dump, but I still don’w know how much water goes into the tube (read brain) before my overload hits.
Comforting people. That is hard. I’ve learned the “normal” responses that you are supposed to give, but I tend to be cold and clinical. That really bugs people. and they get angry that I am not “responding” to their needs. Of course I am not, but there is not much I can do about that.
7. Job hunt? what’s that. Mostly jobs have fell in my lap over the years. Luckily, Been with same company for nearly 18 years. Finally in a position that lets me be me and do what I do best. I really do worry about the day when I will have to job hunt.
8. Yes I go into sensory overload. it’s icky time and I don’t like it. We have noticed since my diagnosis my melt downs occur more during my cycle.
9. No. I’ll keep with the same interest until something new comes along. I tend to rotate through my interest
10. I have not been prescribed long term drugs except pain/anti-imflamation for injures. I am very susceptible for drug interaction. I can’t take some pain meds as they make me ill. I’ve told my doctor I flat out won’t take certain drugs. I am very aware on how I normally feel, so I can tell when I am having a bad drug interaction.
1. I am wondering if travelling is hard for all Aspies as they age or if it is just me? I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades?
I used to be able to travel, and go places, but these days I like to be pretty much always at home. A small part of that is having 2 cats and a dog, because it does limit it, but if I’m honest they do come in handy as an excuse! I’m happy and comfortable at home. In some ways it would be nice to go out and see different things (where they related to my interests mainly) but with the internet you can see a lot anyway, and probably get a better view! I do plan on going a bit further in the next year or so, but I’m only thinking about half an hour on the train! I’m early 40s by the way. Even when I was younger I still liked to get home. But I could cope better. And part of going away was trying to fit in and have a friend. I don’t need that any more. I am extremely introverted so that might make a difference?
2. Is liking or disliking foreign travel related to ability to pass for NT at home?
Not sure. I think for me the liking would relate to learning new stuff, and seeing things that were related to my interests. And the disliking would be the stress caused by unfamiliarity and being outside my comfort zone.
3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)
I don’t go on long flights (or short flights) any more. If I did I’d need an aisle seat as I’d need to be able to get up whenever I needed to without having to climb over or disturb someone else. I can’t bear being shut in. I’d probably have to upgrade to get more room. The planning would be fine because I’d plan to an excessive degree. I’d have to be there miles in advance to allow for traffic hold-ups, parking, check-in queues. I hate the thought of being late so we’re talking majorly early. I’d rather take a book and something to eat and have a long wait at the airport than be rushing. I’d be stressed, big style. Better once I was there and checked in, but then I’d stress again about needing the toilet before I got on, and then stressing that I might not be able to go on the plane when I needed to would stress me, thus necessitating a trip to the loo (irritable bladder!) …. And then getting close to the destination it’s the same issue. And worrying if my bag will have been lost. Basically it’s a big worry. And the person I used to holiday with didn’t understand any of this which was more stress in itself. If you’re with someone who identifies where the toilets are before you, and understands that you want to be there well in advance and is ready to go when arranged, well that makes a big difference. So basically you need to find a travel companion who is understanding!
In general, planning and all aside, I’d take a couple of favourite books, my iPod, and maybe a crossword puzzle or something. Enough to keep my mind busy. And the rest of the time I’d just go into my head and daydream.
4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?
I’ve only had a couple of what might have been panic attacks – one I sat in an exam hall for 2.25 hours not writing anything – and only my friend who was sitting a couple of rows back noticed! It passed. And the other was a couple of years later, again in an exam hall, and after a while I did walk out. In an unavoidable situation where you can’t escape – that sounds terrifying to me. I guess the only thing you can do is go with it, and tell yourself that you’ll get through it and survive. The worse thing you’ll have to cope with at the end is embarrassment and most other people, if they’re decent, would be either concerned for you or thanking their lucky stars it’s not them. And if they’re not decent they’re not worth giving a second thought to.
5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?
Yes! But then I guess I’ve only realised in the last year that I’m an Aspie so I may have been doing all these things before and not realising (I sometimes think I wandered through life in a daze!). But maybe it’s not getting more autistic but trying less to fit in and act NT, and instead letting yourself be the real you? My coping strategies for life in general (which will, by necessity, include Aspie-related ones) have improved dramatically because I’m much more self-aware – I’ve read more, thought more, drawn on others’ experiences. I can see some of the way I was in my mum, but the difference is that I recognise my traits, and my difficulties, and I act on them. She doesn’t.
6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?
My strong emotions – I tend to feel overwhelmed in my head and I’m noticing myself stimming a lot. But I find two things help – I sit down and write on a white board (but a big bit of paper would do – though I enjoy rubbing things out when I’ve solved them) all the things (in a mind map) that are bothering me. Every single thing that needs doing or is annoying me. I’ll wander round the house jotting things down. Even something like the cats’ water fountains needing topping up goes on there. That way, once I’m done writing, I can see that the stuff in my head isn’t that big or that pressing. And it gets it out of my head and identifies it. It works for jotting down the emotions themselves too – ‘I’m angry’ leads to putting down the things making you angry. And when it’s in front of you it’s easier to go through and work out what you can do about it. (As you can see I’m very practically-minded). The second thing I’ve started doing is using one of the characters in my head and having an imaginary conversation with them to discuss what they think I could do. It may sound weird but it de-personalises my issues and makes me focus more on solutions. I was doing both these things yesterday because I was feeling swamped and I’m feeling miles calmer just by having it all written down. The board is by my desk ready to go through later – getting it out of my head was enough to settle me down sufficiently for yesterday.
Supporting someone else – if I can’t offer practical solutions (and I know sometimes I try being practical when people just want sympathy – but practical solutions seem more logical, I mean wouldn’t you prefer to solve a problem than cry about it?!) then I’m struggling. I can do a certain amount of ‘there, there, it’ll be alright’ if they’re the type that want to be told that, but I’ve a friend who’s quite depressive and when she’s like that nothing will do. She doesn’t want to hear ‘it’ll be alright’ and doesn’t believe it. And I have no idea what to do there.
7. How do you motivate yourself to job hunt?
This one’s very relevant to me right now (she says, preparing to launch into waffle mode with gusto). I’ve worked for myself for 8.5 years, at home, and it suits me so much better than working in an office surrounded by people ever did. I hated being overheard making phone calls, and all the people being around, the noise, the travelling to work in traffic… But I’ve found problems working for myself in that it involved client contact and the phone calls & meetings stressed me out. And I’m constantly doubting my own ability and knowledge. I enjoy working with numbers but not people, which is a bugger when you have your own business. So I started doing as much as possible by email and only taking on clients who were prepared to deal with me solely by email (limits the pool of potential customers). But I’ve now made a decision to get rid of my lousy clients, keep just 4, and spend the rest of my time studying (which I love) and writing. I’ve dreamt for a long time about being a writer (no idea if I’m any good) and even if it makes me no money I’ll have tried. I’m lucky that I’m financially secure – no mortgage and my current income from those 4 clients gives me enough to live off and save for another month. And if they go belly up then I’ve savings and can find more clients (hopefully). I’m fed up with society’s pressure to make as much money as you can and success being measured by that. Life, for me, should be enjoyed. Like Otterknot I get that sometimes you have to do stuff you don’t want to, but I strongly believe that if you can find an easier way to do something you should take it (assuming it’s legal, moral etc.) Why struggle if you genuinely don’t have to. My mother doesn’t get this at all and it’s getting to me because I’ve no-one to say ‘yes Liz, if it feels right to you then go for it’. She’s a believer in being a martyr and has rich friends so everything is judged on how much money you make. And I really hate that (plus I have a few self-confidence issues that make me feel second-best as a daughter anyway). So I guess I’m trying (in a roundabout, ranty, waffly way) to say that you need to find something that you enjoy or at least can feel comfortable in. I know that’s not always practical but sometimes you need to take a step back and think about it differently. Maybe ask someone who knows you well (if, unlike me, you have friends!) what they’d do if they had x, y and z to cope with? And forget about pleasing anyone else or their expectations. If downsizing and having a low-paid job makes you happier than having more and a stressful life then go for it. You only have one chance at life.
8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.
I haven’t noticed but then I’ve not thought about it in that context. I’m noticing more and more about myself so I’ll try and bear it in mind next time. I know I can get more emotional sometimes.
9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?
If it involves another person then yes, otherwise no – I think it self-regulates. I’ll just gradually edge off the interest and move onto something else. I don’t remember ever finding my interests so intense that they bother me. With people, there have been some where I’ve got too intense in my head about them and needed to mentally take a step back. Recently(ish) I was recently focussed on someone (not in a stalker way or in a romantic/relationship type way, just in a ‘they become part of my coping with life daydreams’ sort of way – god knows if that makes any sense) and I could feel it becoming too much so I deliberately made myself stop thinking about her. I’m fine again now and can go back to the daydreams that she’s in quite comfortably, and just flick in and out of them and other dreams without any bother.
10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?
N/a
I’m sorry to hear about your mother being unsupportive, but seriously, Liz, if it feels right please do go for it. You can actually say you are financially secure; that’s AMAZING. An achievement that a lot of people I know would love to say was theirs, and from the sounds of it, at least recently, you’ve done it on your own terms; that is super amazing. You also have some kind of plan in place if you need more money; that’s ANOTHER example of amazing. If I’m being too subtle, let me be up front and say I am feeling very impressed right now 🙂
I can also really relate. I feel like I could have written that part of your post. I ‘opted out’ a few years ago. I had some money in the bank, always wanted to be a writer, hated my job (hated being an employee as it turns out, too much stress and overload), started suffering debilitating insomnia from not being able to cope anymore, and handed in my resignation. Unfortunately, I wasn’t as self-aware as you very much appear to be. I only just figured out less than two weeks ago that I am most likely ASD. That means that there was a lot of wasted time (and money) trying to be something I was not, even on my own, even with something I loved like writing. Even on the computer screen, I was trying to pass. I was looking for solutions in all the wrong places. I even moved countries. It was that move, coupled with – finally – finishing up a collection of personal essays that made me open my eyes to my ASD traits. I was editing the essays and I could see that all my ‘quirks’ added up to more than just being quirky. The theme of the whole collection, by the way, concerns my excessive talking. Sooo many missed signs!
Thank you so, so much for this (and some, in large amounts) – I needed to hear (read) this right now. I’m keeping this post and will re-read it regularly to try and change all my negative thoughts into positive ones. And you’re right – it is an achievement and I shouldn’t forget it.
It’s taken me a good while to get this aware, and it’ll probably take me an equally long time to successfully act on the awareness, but just realising I’m Aspie (well likely Aspie, I’m not sure what the official diagnosis will say eventually but for me it feels right and ticks all the boxes) seems to have had a really good effect. I feel more confident about my life – still a long way to go but the initial steps are there. And having places like this to ‘hang out’ make a huge difference. Every survey or blog seems to leave me with more ‘Oh I never realised that’ moments or ‘Now it makes sense’ flashes.
I’m, meanwhile, seriously impressed that you’ve done a collection of personal essays (thinks to self – stop procrastinating and get typing!)
I agree with MrsT. You’re doing what I think a lot of us dream of doing! Your mother can think what she likes. Working on your own terms, instead of in the ways and for the reasons mainstream culture says we should work, is a brave risk. If more people modeled doing it and made it work, I think people like us would feel more hope of finding a place in the world, because we’d see more people finding their places.
Thank you! That’s another comment to save and re-read 🙂 It’s crazy because I got a job advert postcard shoved through my door this arvo and the salary is lower than I’ll be making but for full-time hours whereas I’m working very part-time hours (except it’s squidged into a small block of days each month rather than spread out)! So how can what I’ll be doing be anything other than fantastically clever by comparison?!!
I really should believe in myself or at least have the courage of my convictions.
I think I’ve been experiencing a particularly effective dose of ‘backstopping’ – you’re both stars!!
Update on Q8 – I stim less. And I don’t like that! I feel like I need to stim mentally but physically it doesn’t feel necessary. I can’t really explain it. Maybe like eating a big meal when you’re not hungry – part of you wants it but part of you says no…
1. Well, I am only 20. But I do love traveling but am very specific about how I want to travel.
2. I don’t try passing anymore, so no answer for this.
3. I have only taken two flights in my life, both were under two hours and I was too busy with “Yey, I’m in an airplane!”
4. By shutting down. No, to be honest, I mostly make sure I am not alone if I get into a situation I won’t be able to leave just in case.
5. Well, only 20 again.
6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic?
Negative ones? Screaming at the fridge. Listening to music, sitting in a corner and crying. Cuddling up with plushed animals. Or shutting down.
How do you support someone going through a very difficult time emotionally (nothing practical to be done)?
I’ll try my best to give validation for the other person’s feelings. I will listen, offer late-night conversations, cuddles, offer support where needed, make food they like …
How do recognise what the feelings are, and how do you respond in a way that comforts the person?
Excessive staring. No, but I do try to watch them carefully, listen to their voices. I can interpret other people’s emotions well if I know them enough to have “reference material”. An example? My best friend rather shows anger instead of helplessness, so I have recognized that and whenever he raises his voice, I will mentally check whether actual anger or rather helplessness seems the more likely cause. Or I just plain out ask. And then … it’s a bit of a variable-game. “If x, then y”, basically – though I will play it by ear most of the time. “If helpless, offer support.” “If angry, see if someone rather needs validation or to be snapped out of it.” “If sad, offer cuddles/ice cream/plushy animals.”
7. No answer for that as I am still in school.
8. Oh God yes. My EF sucks during my period.
9. Sometimes, yes.
10. I took concerta as a child and it killed my last bit of body awareness. I had a lot of training before primary school, for checking in with my body and stuff. On the medication (and for years after) I totally forgot to drink and eat because I would not notice hunger or thirst. It got me into the hospital twice.
I like your process for determining what emotional support is to be given. I think it’s very sensible, and also efficient. I particularly like that line ‘If sad – offer cuddles/ice cream/plushy animals’. I would personally LOVE to be offered any one of these options when sad!
anonymous answers:
Q1: Travelling sucks in general. Acclimating to a new environment that deviates from the norm is not pleasant. Not having the same sensory environment (fan on at night, same pillow, same humidity) sucks.
Not to mention having to undergo the pointless security theater of the TSA in the states and all other frustrations that accompany travel.
Usually 4-5 days is the max before I get majorly pissed off at not being home.
Q2: Not sure what is being asked.
Q3: Planning is the best part. It allows me to lay out what I think will be enjoyable and gives me an anticipation carrot to look forward to.
Airports are the worst.
Flying doesn’t bother me at all if I have a window seat. Aisle seats are okay. Center seats are a bitch. Reading or sleeping is the way to go in flight.
Having a car is very helpful in the destination. Allows for new environment acclimation on my own pace and not feeling trapped in a hotel that may or may not suck.
Q4: I put a lot of effort into avoiding situations that I am not trapped in so I don’t encounter this situation often if at all.
Q5: Only 35, but I do find my peculiarities/traits becoming stronger as I age. I have less patience for things that deviate from expectations.
Q6: Don’t do well supporting others emotionally. It causes problems.
Anger is my strongest negative emotion. If I can ask questions to alleviate my frustrations, I can mitigate anger. In situations where I can’t investigate, I blow up.
Q7: Trying to do so right now. Not going well as I can convince myself with a lot of reasons why staying in my current job is acceptable even though I’m making 25% less than I should be.
Q8: n/a
Q9: My “one thing” changes regularly. if I had to define what the interest is, it would be technology, but that provides a myriad of things to obsess over.
Q10: never taken prescriptions outside of a zpack/penicillin.
anonymous answers:
Q1: I am 100% okay with traveling anywhere as long as I have a clear and detailed set of instructions for what how to get there and what to do when I’m there
Q2: Not entirely sure if I understand the question
Q3: HAVING TO SIT IN THE MIDDLE SEAT. Oh my god it’s so stressful because you can’t lean out into the aisle or against the wall. You have to just sit up perfectly straight the whole time to avoid touching the people next to you AND THEN THEY DO IT ANYWAY
Q4: My panic attacks are entirely associated with large groups of people, so I try to get as far out of the group as I can
Q5: As I get older I find myself having less of the good things and more of the bad things. Like I used to be able to hyperfocus and sit in class and just absorb all the information through osmosis without having to take any notes, but now I can’t so much any more and things like stimming and avoiding eye contact have become much harder to hide and deal with
Q6: I am unusually empathetic for Asperger’s so really the biggest problem I have is trying to communicate the words that I am feeling
Q7: With the fact that if I don’t I will become a hobo and die
Q8: Not particularly, no
Q9: Not really. Although I do have to stop if I realize I’ve forgotten to eat in a while
Q10: Never taken those
anonymous answers:
Q1: I definitely feel this, though I’m not sure that I feel it quite so extremely yet. I also have a bad home environment, so that might contribute to my tolerance of travel for at least a few days. I definitely prefer my room, though, and if I travel to a high-stress environment full of people for a day or two I’ll need at least a week to recharge (which I rarely actually get).
Q4: I generally just end up crying. If I’m in that sort of a situation, it’s generally when I’m being monitored, like being at school or at work, and I’m still somehow able to keep myself from running away because I know how bad the consequences will be when I suddenly run away from something that I can’t really leave in the first place.
That said, in the few situations this has happened, I’m generally allowed to leave/sit down because someone notices that I’m crying, and it has thankfully never been worse than that.
Q5: I don’t know if I’ve become “more autistic”, though I think this is somewhat poor phrasing, but I’m pretty sure I understand what the question is getting at – some of my sensory perceptions have changed with time, though, since when I was younger I was almost unable to tolerate physical contact from other people, and now I’m fine with it, but I never used to have issues with noise sensitivity and this has gotten worse. I’ve also found it a lot harder to make eye contact and to have proper conversations with people. To be fair, I’m not really that aware of how I acted when I was much younger, so it’s possible that I never made as much eye contact as I thought I did in the first place.
Q6: I’m only slightly alexithymic, so i can generally tell the difference between certain subtypes of negative emotions such as “sadness” or “anger”, but i often have a hard time telling the difference between specific emotions, such as frustration or annoyance. It’s hard for me to know what to do, though, especially when I’m undergoing particularly rough patches of depression, since then I won’t be able to motivate myself to focus on a special interest as a distraction and will instead just spend a lot of time staring off into space.
That said, most of the time when someone’s going through a difficult time and there’s nothing practical I can do about it, I generally just have no idea what to do. I have a hard time telling emotions beyond “sad” or “angry” in other people, though, so it’s somewhat hard for me to relate. Sometimes, when I know the situation, there are exceptions to this. I try to say something practical, or to at least pat them on the head or something if I know that they’re comfortable with physical contact, but I don’t really think that I do a very good job of helping people through difficult times, which is something that I want to improve.
Q7: I haven’t actually been able to motivate myself to job hunt in quite some time, but I have a job right now so it’s not totally urgent. I hate it, though.
Q8: My EF goes down, and I generally have less energy. I also seem to have higher sensitivity to noises and to colors, which sometimes gives me headaches. I’m sure my social skills get worse too, but I think that’s secondary to the pain and exhaustion that I generally feel.
Q9: Sometimes, especially if I have other things that I’m interested in that I’ve gotten behind on; such as if I spend several days playing a game and I get totally wrapped up in it, then I’ll end up remembering that I have anime to catch up on. Then I’ll want to read wikipedia articles on a specific topic for a few days. Sometimes I feel like I obsess about certain things in shifts. If I obsess about something for too long, I’ll remember that I have other obsessions that have taken a backseat and I’ll go back to those because I’ll realize that one of my interests has taken a back seat and I’ll want to engage myself with it again.
anonymous answers:
Q1: I find travelling extremely hard, which is really sad for me because my special interest is other countries/cultures. When I travel I can cope with about 5 days (if I’m using all of my coping skills) and then it just goes downhill. I particularly find moving between places unbearable.
Q2: I don’t think it has anything to do with that. For me traveling is hard because I am away from my routine/controlled environment. I feel out of control. If I am in a foreign country it just means that I am even further from home/safety.
Q3: I am always picked put at the airport for further security checks. My partner says it is because my eyes are darting all around and my body language doesn’t look ‘normal’. I find flying terrifying, though it has more to do with panic attacks that I don’t really consider part of my ASD. I do find the noise/vibrations of planes very stressful because I can hear/feel every little change and then I think that something terrible is happening.
Q4: I don’t catch express trains, only all stations so that I can get off whenever I want. I won’t get on packed buses. It is not the best way to deal with it, but on the other hand it is my choice and if it doesn’t really restrict my life, what is the problem?
Q5: I have gotten worse as I have aged. I have found my sensory issues, my resilience and my general coping to have worsened. I have lots of new skills and ‘tricks’ that I didn’t have when I was younger, but I have deteriorated anyway. My life now is smaller than it has ever been.
Q6: I find this very difficult and I think that is why I revert to trying to be practical. I find other people’s feelings very overwhelming and a big part of that is that I don’t even feel like I can cope with my own feelings, so where do I get the energy to help someone else?
Q7: I have been unemployed for 1.5 years and find even reading this question to cause anxiety.
Q8: I notice that it adds a general increase to my sensory load… I have one less spoon on these days.
Q9: I can relate to this. I start to feel overwhelmed eventually, like the interest has become an obsession that is taking over. I do need to try to step away, but it is very hard and I really have to work hard to break that habit of compulsively going back to obsessing.
Q10: I have tries Ritalin but it gaving me a pounding racing heart that would last about 8 hours after the dose. To me the sensory toll of this effect made it not worth persueing longterm.
anonymous answers:
Q1: I’ve found it harder to travel as I get older, but I think that has a lot to do with autistic burnout. Normally I can handle somewhere between three and ten days before I start scratching the skin off the back of my hands. I used to be better when I was a kid though.
Q2: I don’t pass as well when I’m stressed in general but I’ve never actually had anyone figure out that I was autistic. I’m really not sure how much is passing and how much is being passed off.
Q3: During long flights I start to get overloaded but I have these really nice noise blocking headphones that help a lot.
Q4: I sorta just curl up in a ball and hope no one talks to me.
Q5: I’m not sure how much is burnout, how much is the effects of gender dysphoria, how much is actually real me but since puberty I’ve struggled a lot more with things like executive function and spd. I’ve also recently started to lean toward selective mutism and dyscalculia during shutdown.
Q9: No.
anonymous answers:
Q1: My tolerance for travel is (slightly) better – once I get over the second-day-out hump, I’m usually fine. But I take a few weeks to recover fully from most trips as well.
Ironically, I’m much better at going into new or strange places when I’m traveling than I am at home. There are grocery stores in my hometown I have never entered and probably never will, but I’m far less shy about strange places when I travel. Maybe because it’s all strange?
Q2: I have no idea. I both love and am terrified of foreign travel and can usually pass for NT at home (although it is exhausting). I have yet to pass for NT abroad, except occasionally in countries where I’m fluent in the language.
Q3: I get easily overwhelmed by airports. Too many signs, too many people, the lighting is terrible, I’m on a schedule, the restrictions, the security…I haven’t had to take a long flight alone, ever, and I’m not sure if I could get myself to my gate on time if I had to. On the flight itself, my biggest problem is the long hours of sitting, which I find intolerably painful for fibromyalgia reasons. It’s been about ten years since I’ve taken a flight long enough to really put me in pain, so I haven’t developed many coping strategies for that yet.
Q4: Progressive relaxation to reduce my anxiety and physical panic symptoms often helps. I also try to reduce sensory input and alert someone (usually my travel partner) that I’m having trouble before shutdown or meltdown sets in.
Q5: I feel like I’ve fluctuated greatly over the years. In my late 20s I got significantly more autistic, half because I burned out at work and had no reserves left to “pass,” and half because I was finally diagnosed and decided I was done fighting quite so hard to pretend to be someone I know now that it’s okay never to be.
My executive functioning is significantly worse than it was ten years ago. My comfort in social situations is significantly better, but that’s because I act “more autistic” and don’t really care if people have a problem with it, not because I’m better at social maneuvering/passing.
Q6: Some of the best advice my trauma therapist ever gave me was to “name your emotions.” It’s incredibly tough with alexithymia, but I find that the attempt requires me to sit with the emotion and so it processes, even if I never actually hit on its name.
I am still very bad at “just being” with someone who is going through a rough time emotionally. I usually have to ask what they’re feeling. “That sucks. What can I do?” seems to be the must useful way to respond in a comforting manner.
Q7: I’m a freelance writer, so I either hunt for new clients constantly or I’m out of work. I schedule an hour into every work morning for it. After five years, I’ve actually started to enjoy it: I like seeing what’s out there, and I like the possibilities suggested by a new job opening or new client.
Q8: Sensory input becomes utterly impossible to deal with, and meltdowns become much more common as a result. My executive functioning is poorer, but usually not to the point of impairing my daily activities the way the sensory onslaught is.
Q9: After about four months of research on a particular topic, I usually need a month off. This is especially true if I’m teaching as well as researching during that time.
Q10: I haven’t tried stimulant medications, but I react badly to several other medication classes, including anti-seizure meds and antidepressants. Nausea, insomnia, parasthesia, neuropathy, and cognitive/memory problems are my most common symptoms.
anoymous answers:
Q1: I get “homesick” extremely fast! I have many issues sleeping, so my own environment is very important. However, I’ve always had to travel (first as a child of divorced parents, now as someone who works with studios in different states/countries), so I’ve had to learn to suck it up and just take care of myself extra hard!
I’m 30 years old currently, for reference.
Q2: It definitely could be! I think for me, however, it’s almost easier, especially in airports and on the flights. These are strangers. I don’t have to worry about them too much. It’s when I land and have to get down to business that I have to work extra hard.
Q3: Long flights are difficult for me. The planning is fine, but if the plan goes OFF, that’s not. It’s very hard for me to deal with flight delays/cancelations/changes, so I have to remind myself that the worst that can happens is that I’m late or take a different plane. To cope, I leave myself some travel buffer room just in case so that I’m not stressed about a timetable at my destination.
Sensory overload is a big deal in airports for me, and that tends to create anxiety, especially if travel plans are already going awry. In airports and on the plane, I keep my headphones on CONSTANTLY, unless I need to take them off to go through security or speak with an airline employee. As long as I have music, I can control things in my head a bit.
On the flight, I always have things to fidget with and activities to keep my brain engaged if I start to escalate. My iPad, books, puzzles, Nintendo 3DS. And of course, headphones.
Q4: If I can’t put on my headphones, I’ll excuse myself for the restroom, pop a Klonapin, run water over my hands/wrists, take a moment alone to gather myself.
If even that isn’t an option, say I’m in a crowd or something, I’m fine with dry-swallowing a pill, and will self-soothe by tapping my fingers to my thumb one by one, or tapping my way through different time signatures on my wrist or thigh until I de-escalate.
Q5: Both! I think some things have gotten better due to experience and more knowledge, just learning to avoid certain pitfalls and how to take care of myself better. And I think some things have gotten…I wouldn’t say worse, but more evident, because I work more and have less energy, and because I’m more willing to “be myself” rather than try to assimilate.
Q6: Strong negative emotions are very difficult for me, and I used to shut down entirely when I felt myself approaching one. I have a difficult time telling the difference between sadness/anger/irritation/disappointment…it’s all “frustration” to me! To avoid shutdowns, I had to learn when I felt I should distract myself or when I felt I needed time to sit alone and “unpack” the feelings that I’d squirreled away.
As for other people who are going through a difficult time, if they have told me they’re having problems or are upset, I will try to ask if there’s anything I can do. It makes me feel useless sometimes, but I’ve found that just letting someone know that I’m there for them and will help in any way I can seems to do the trick. I have found that many people are actually very grateful that I don’t try to give comforting words or my opinion unless asked for.
Q7: Thankfully, I have a job! But when I didn’t, it was very difficult. I know I have responsibilities, however, so the logic of my situation outweighed my feeling of intimidation. I need to pay my bills, I need to take care of my pets, and I need to be prepared in case of emergency.
Q8: I definitely have less tolerance and more sensitivity before my period, but I’ve heard this is “normal”!
For me, it usually means that I get quieter, I tend to withdraw more, and there are less “strikes” available before I’m out.
Q9: I usually have to take a break because I start to get hard on myself for not knowing everything yet, and then I get overfocused on what I DON’T know, and what if there are unknown unknowns, and oh god, how will I ever catch up????sdlfjsdlfkj
Once I catch myself letting it affect how I feel about my own intelligence or understanding, or once it starts to negatively affect my work or home life, I will force myself to break whatever routine is allowing it to consume me in that way. Usually, I’m able to find a healthy way to keep it in my life, with moderation. Sometimes I end up chasing another rabbit entirely down the hole.
Q10: I have not taken ADHD medication that I’m aware of.
anoymous answers:
Q1: I quite like travelling, but only if i go alone. I like being on trains and I especially like staying in Hotels. I love that I can just shut the door and be totally alone for hours. But mostly I like being at home too.
Q2: Good question! I have quite a few friends who are not English and I find that I feel more ‘normal’ around foreigners. But I do find foreign travel stressful simply because of not wanting to make any kind of error in manners or cultural awareness.
Q3: Only ever taken two long flights, once to USA once to Japan. Because I can wear headphones all through the flight I find the only problem is the boredom.
Q4: Don’t have panic attacks really. But I hate being in situations that I can’t leave – especially visiting people’s homes. How do I cope? Angry and moody before I go, silent withdrawal after I leave.
Q5: I think I am more autistic – but then I was only diagnosed a few years ago so maybe I notice it more now. But I think age has made me more intolerant and experience has given me a range of coping strategies that I never had before, so perhaps it seems like I am more autistic. I think I am living more authentically now.
Q6: If I am having strong emotions I cry. Easily and a lot. Usually if someone else is going through strong emotions I try to be calm and to offer to listen. Inside I am very distressed but I can appear calm and in control for them. I learned to do this when my sister was terminally ill. I do need people to tell me if they are upset though. Otherwise I often wouldn’t know. I cannot empathise with a situation that I haven’t experienced myself. For instance, when my brother got divorced I had no idea how he felt. I could make an assessment based on things I have read about or seen in films, but I couldn’t have any innate emotional reaction to him, I couldn’t naturally empathise inside myself.
Q7: I am self-employed. In the past I found it relatively easy to job-hunt because I had a child to support, so i could do it for her.
Q8: Bad PMS when I was younger. Quite devastating really. Caused so many problems in my life.
Q9: No. I find that my obsessions tend to conclude naturally so I just let them play their course. I wish they were more consistant actually.
Q10: No
anoymous answers:
Q8: YES. I no longer menstruate, but when I did I found that PMS often also included lowered tolerance for sensory issues, ability to cope, etc.
1. I do prefer my own home but I’m ok with travel. I travel rarely so this maybe why.
2. No idea. I usually keep to myself when I’m on holiday.
3. Do you experience problems with long flights? Due to being on lots of delayed flights when I was young I worry about cancellations. I dislike being confined in the plane and the uncertainty of getting stuck next to fractious child or someone with no manners.
4. Don’t have panic attacks.
5. I have to force myself more to be organised and daydream more.
6. I close down, I’m no good with anger. With other people I try not to take in their pain, because it’s their pain and taking it on as my own is selfish. I want to help but I don’t know what to do – hug, just listen or agree? A hug seems to work best, but I feel awkward.
7. How do you motivate yourself to job hunt? I do certain steps at the same time each week
8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.
Yes, I call it being a manic depressive at 200mph, but I know my cycle so I think “OK I feel depressed but it’ll be over in a couple of days.” It makes me more clumsy and very, very forgetful. I do enjoy the post-period euphoria.
9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?
Yes. For me this is linked with my menstrual cycle because before my period I want to know or get things more (damn you, ebay) and I feel it gets too much so I have a break from it for that reason and also I don’t want the interest to burn out too quickly. I also have long term interests that I dip into and out of. Sometimes I don’t think about it at all for ages (years sometimes) but then I get back into it.
10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?
No – they’d have to force it down me. I read there was a drug that can make the user less interested in their special interests and I thought that was sad – not being interested in anything or finding out new things.
The nearest thing I can relate is there was one pill I took, Yasmin, it made me feel dreadful like they all do, but this one made me understand why drug addicts go on about feeling numb on methadone and go back on heroin. Luckily, I know what I was like without it, unlike say a teenager who was described it and thought the effects were “them”. It made me overly anxious and clingy. I could see what I was doing was stupid but I couldn’t stop myself. It also killed off my libido – an effective contraception. When I stopped taking it, because the migraines were so bad it was like a veil had been lifted or a light had come on. I hate periods and they are more frequent and heavier, but it’s better than the pill!
1. Travelling is ok as long as everything goes to plan, but if I’m delayed and believe myself in danger of missing a connection, then anxiety/panic set in, and I feel nauseous and may vomit. Also, I need more frequent visits to the toilet and I worry about having access to one when I need it. Once I arrive at my destination and can relax in my room, I feel better. I like travelling and visiting new places, and I have no problems as long as I can have some time alone when I need it. I have found that as I’ve got older I’ve become less able to cope with stress and become more easily overloaded.
2. I don’t live in my country of birth, and living in a foreign country helps me to pass as NT, because my quirks, faux pas and social awkwardness is put down to the fact that I’m a foreigner. Speaking a foreign language acts as a mask. When I’m speaking the language I somehow detach myself from my real self and emotions, and almost become another person. This helps me to talk in situations in which I would otherwise find it difficult to do so.
3. I find it hard to sit confined to a narrow seat for a long time without being able to get up and move around. I fidget a lot and am very restless. I always take my survival kit – an MP3 player, earplugs, blindfold, a book and a small smooth stone or shell I can keep in my hands.
4. I rarely experience panic attacks, and have never had one during a flight. The other times when I experienced them – in overcrowded public transport and once in a restaurant during an earthquake – I was able to remove myself from the situation before I passed out and sit down to calm down.
5. I had a burnout two years ago and since then I’ve found it hard to find the energy and motivation to use the coping strategies I’d learned to appear to be like everybody else. I no longer worry so much about fitting in and what people think of me. I haven’t become more autistic, I just don’t supress the urge to behave in a way that is natural to me.
6. Positive emotions I express freely, but when I’m experiencing strong negative emotions it’s usually a sign that I’m becoming overstimulated and a meltdown is emminent, so I withdraw somewhere quiet to be alone to calm down. I find strong negative emotions in others such as anger overwhelming and I need to go to be somewhere alone until they have calmed down. Later I come back and see if they are ok and need help. I’m not touchy feely and rarely do hugs, so if I see that a person is upset and needs comforting, I asked them what’s wrong, listen and suggest ways I can help them. If they are grieving or depressed, and don’t feel like going out, I may offer to do their shopping for them or make a meal to eat together. Keeping myself busy helps me to cope with the tension and stress the situation causes, and I can better deal with my own emotions. Or I just sit with them, make them a cup of tea and keep them company, without the need to talk.
7. I work for my self now. When I was teaching I didn’t need to make much of an effort to look for jobs because there is always a shortage of native English teachers, so I often found myself being approached with job issues. If I had to look for a job, I don’t know how I’d go about it, I find the whole idea very daunting.
8. Yes, I find that my sensitivity goes sky high and I become overloaded more easily. I become very anxious to the point of paranoia, and more rigid in my thinking.
9. On a short term basis, yes, if I’ve been at my computer for too long I become restless and hyperactive, and need to go and take a walk to clear my head – or just do something else for a bit. There comes a point when my brain simply can’t take any more information coming in. Then, when I go out, I experience a kind of derealization. Long term no, if I’m interested in something I stick at it until it exhausts itself.
10. N/A
1. I have to travel for work and find it very difficult. At this point I’m experienced enough to have a coping system down for packing, airports, planes, long flights, delays, meals, language barriers, etc., but that doesn’t make it wonderful. I make it through and that’s about it. The greatest challenge I have is that most business travel is not solo. How to maintain an appropriate level of small talk, and handle being with people, even people I know, almost constantly for days at a time, is very stressful and usually I am nearing shutdown by the end of the trip. I have learned that more breaks and more alone time is better, but that is not always an option.
2. Foreign travel … weird food, time change (this is a huge problem for me), strange hotels / bathrooms / smells, foreign language, all of the other things to deal with … passing as NT is not even on my radar.
3. Coping strategies: ALWAYS have music and earphones, paper books, knitting (where permitted by airlines), snacks that can double as meals as the airline food is questionable to me, hoodie. The space confinement doesn’t bother me anymore. Earphones help to deter chatty seatmates, and I’m not afraid to say, “Flying makes me nervous and I’m going to listen to my music now, sorry.” I don’t sleep on planes generally.
4. It’s not a coping strategy, but I’ve learned I have to power through it. I’ve had panic attacks since junior high. Often I don’t have the luxury of stepping away to regroup, as it will occur during an important luncheon, meeting, or presentation. I try to pretend there is nothing wrong and internally freak out. The better prepared I am for a situation, the less likely I am to have a panic attack. Sometimes, though, they sneak up on me at unexpected times.
5. Some of each. There are aspects of autism that I’m finding harder, or less desirable, to hide or manage (depending on the trait) as I age. (It’s part of what led me down this path in the first place. I’m nearing 40 and still can’t make friends. Clearly it wasn’t something I was going to grow out of.) My coping strategies have improved with experience, without a doubt. But the energy I want to expend on, say, fitting in at a party, is almost zero anymore. It’s not worth the price I pay.
6. I’m not sure I understand what alexithymia is or whether I have it. Strong negative emotions (my own or other people’s) can lead to shutdown. Supporting others depends on my relationship with them. If it’s someone close, I struggle, as I can usually see both sides of the situation and no one who is suffering wants to hear that they are wrong or what they should do differently. So I listen and make compassionate noises and comments. I also struggle to realize that there is a serious emotional “thing” going on because I won’t pick up on the subtle clues that NTs do. People have to tell me that they are having a rough time. This causes problems in my relationships.
7. I’m lucky to have my current, good job with the same company for almost 10 years. Motivating myself … well, I would struggle on my own but I’m a single mom. So I do it for my daughter.
8. I’m not sure, as I’ve not specifically paid attention to this.
9. Sometimes, but not often.
10. I’ve never had any of these.
1. Traveling with age
(i) Traveling for holiday was a welcome event in my first decades. While a student I went camping and did quite some sightseeing in different countries, with wife and kids we spent nice weeks at the seaside and visited relatives abroad. We never were with a larger group of people, which will have helped. No problem, almost NT.
In the last 10 years it became a different story. Being single (divorced, kids out of the house), I went several times for one week to the same islands, long walks on the beach. Traveling alone. Not talking to anybody at all, except in restaurants or shops. Nice. Until even that stopped. I did not go somewhere for vacation in the last four years.. Not really feeling bad about the idea, it just does not happen. Staying in the everyday comfort zone wins in comparison to taking the effort, although somehow I miss the sound of waves and the feeling of sand under my feet.
(ii) Traveling for professional reasons was an entirely different story all my live. Conferences, retreats, project group meetings … I always had to leave for some time during the day, frequently without offering any excuse, go back to my (single) room and calm down. Joint evening entertainment? Shared room? The times it happened stick out as unpleasant memories. More and more so with age.
2. Is liking or disliking foreign travel related to ability to pass for NT at home?
See above for the first one. I pass less nowadays and I travel less. Did not make the connection before. Cause-effect relation? Have to think more about it.
3. Do you experience problems with long flights?
Yes. Preparation is a stressful since I delay it too long, closing my eyes to the ‘challenge’. Bad strategy but I can’t help it, Airport and boarding is OK, flying itself is even fantastic. But there are people. Many people. In a small space. Even with a seat at the aisle (a must) the limit is five hours. Intercontinental flights were tolerable when I was young but are no option anymore
4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?
Happens rarely. I shut down, going blank for a while but reboot eventually, even when the negative influence persists. That can hardly be called coping, I am afraid. In the last years the combination and dosage of my medications was very helpful in that respect. Much less anxiety, no panic. But at a price: rarely feeling extremely down, except during episodes of depression, but not high either. Everything becomes more flat.
5. Do people perceive you as more autistic while getting older?
It got noticeable more difficult to pass in my forties and during my fifties everything escalated. When you have to undergo stationary treatment in psychiatric institutions for ASD comorbidities like severe depression combined with substance abuse, people definitely consider you more problematic although not necessarily autistic. By that time an ASD diagnosis would have been extremely helpful but that happened just a year ago.
6. How do you cope with strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?
Tough one. I must admit, I can have a short temper and be the *source* of the negative emotions. Luckily, they are never directed against a person. This character trait, however, developed after I started to take my antidepressants and anti-anxiety medication regularly. Side effect? Too high on dopamin / serotonin? Are we chemically-controlled machines? Before that (I am alexithymic), confrontations were horrible for me, nowadays I stand my ground. Is that good or bad? Don’t really know.
How do I comfort someone: Being brutally honest, except for close family and two or three friends I almost cannot do that in person but only in writing. Thanks to social media and the internet in general that has become an option. Since I am living almost like a hermit outside my workplace the situation almost does not occur anyway.
7. How do you motivate yourself to job hunt?
I feel incredibly lucky to have the same fulfilling job for more than thirty years by now.
8. Does not apply
9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?
That is an interesting one. I obsess quite intensively. Then after two to four years this interest becomes eventually overgrown by a new one of similar intensity. The previous one tends not to come back. I am generally bad at looking back at my own past. I find tomorrow much more interesting than yesterday.
10. Does not apply
I would suggest an anti anxiety drug called Pregabalin.
It has none of those AD side effects / you can just take one and see if it helps as well, no four week wait for a maybe.
For me its’ removed what I call that “someone is about to jump out from behind the sofa” feeling I always used to have.
Or, it was like going from radio to CD inside, there is a level of “hum” that has been removed, freeing up space for extra things.
As someone whom has been on ADs, I cannot stress please try this drug first.
In the States its getting used more and more as a replacement for ADs / cure the anxiety then the depression cannot follow.
However, as its not cheap, your GP is going to give you crap over getting it. Most NHS trusts will insist that you try one or two ADs first / lie – tell em you took them and felt suicidal. Or, if you have ADD or ADHD you can get them straight away as anxiety is recognised for ADD and ADHD and so its an allowed drug.
I get that most Aspies’ have something against taking pills. All ya got to do it try one once, it could, as it did for me, turn your life around.
Sorry for the late reply, I came by your interesting comment just now, reading from top down through this universe of comments. Thanks a lot for answering and sharing your experience!
In another thread further up I already got another similarly constructive advice. The result was that I will discuss plans to carefully adapt / lower my medication under supervision of my psychiatrist and ask my family (not living with me but close) to give me feedback if I behave even more odd than now 🙂 I will definitely mention your suggestion to the psychiatrist. Fortunately in my country it is no problem to get a prescription for Lyrica / Pregabalin. Being from a biomedical background I have no problem with taking pills and in fact are curious enough (apparently feeling too well?) to do some ‘experimentation’.
Another short specific feedback below your second comment
And how are you, a year later please?
Oh, just saw point 10.
I am on Concerta XL and Ritalin / could not image not being on them.
I take 2x 18mg Concerta in the morning, along with 200mg Pregabalin
I then take, as needed, 10mg Ritalin during the day / evening.
200mg of Pregabalin is taken afternoon / evening too.
I have had side effects to drugs, I am told our hyper and hippo senses run inside our body too.
I am very sensitive to packing agents used to bulk up drugs, or the coating used on some slow release ones.
I am also able to feel the exact moment each drug hits me, and how long it lasts.
I am waiting to go onto dextroamphetamines (Adderall in the States), I have had some and omg, its like rocket fuel for me. Some people work better with methylphenidates (Ritalin / Concerta) and others with amphetamines (Adderall).
I can also highly recommend Temazepam; it is possible to go to sleep without three hours of replay and analysis of the day, I have even dropped off with the TV on!
And the big one, the one that is so amazing they won’t let you have many of, Diazepam (Valium). Once that little white tablet takes effect (90m) you will feel a bliss and a sense of peace and (almost!) not a care in the world 🙂
Best bit is, as Aspie’s, we can stop taking drugs very easily compared to NTs, so the worry abut addition and tolerance don’t apply, so much.
I am curious – no problems with Concerta?
I took it as a teenager and it killed my sense of body awareness so bad that I ended up in the hospital for dehydration twice and it just made me numb.
Ritalin had similar effects.
I don’t really have a sense of body awareness to start with.
I will go the whole day without eating and drinking unless the stuff is ready packaged, cold and carbonated.
Am back on Equasym now.
As for Ritalin, love it!
It like clearing away the fog and being hyper clear in thinking.
Since they are not on your list I want to comment on my meds:
At present (episode last month, standard is less) I am on 200 – 0 -200 of Lamotrigine, 300 – 0 – 300 of Trileptal (Oxcarbazepine) and 60 – 0 – 0 of Duloxetine. The first two are mainly described as a treatment against epilepsy but are increasingly used against depression / bipolar as well. The third is a serotonin-norepinephrine reuptake inhibitor (SNRI, as opposed to SSRIs).
Although I don’t have serious physical side effects and a lot of benefits (almost no anxiety, also I sleep well), the persistent problems are a lousy short term memory, overall too much dampened emotions and reduced concentration. Therefore I started thinking about *some* adaptation a while ago.
I don’t bother you with the long list of stuff that was ineffective for me. Thanks again for the advice and describing your reactions to your meds!
1. I’m very bad at travelling. If I’m not comfortable and well fed in the back seat of the car listening to my iPod while wearing thick sunglasses, I’ll begin to feel physically ill (I have hypoglycemia) and then I’ll become a cranky pants. I wouldn’t consider myself that old (28) but when I was a kid I was content to look out of the window and make stories up in my head. I think as my sensory sensitive increased it became a lot more difficult for me to cope outside the home.
I don’t really like to stay away for more time than is practical. I might be able to do a day but I do like my routine and being close to the kitchen. As for recovery time it may only be a few days but I’ll probably not go out for about a week. Usually though, I’ll go to events a few times a month.
2. I guess so. I don’t tend to see myself as passing for NT but I’m a lot more comfortable at home. I barely travel so I would think to travel you would need to be good at adjusting to change pretty quickly multiple times a day, or in the same environment. I think it would really test my limits.
3. I’ve never been on a flight before. I recently decided not to go on a flight because of my fear of change, my hormonal cycle and about 1000 anxieties that suddenly popped up. The worst was worrying about not being able to eat enough on the plane. So, I haven’t done it yet. I think airports would put me into meltdown mode because of all the security checks and people everywhere. It would be a nightmare for me.
4. I might try to hold them in and experience more of a shutdown, though it’s not uncommon for me to have mild convulsions from excessive stress. If I really think I will break down I’ll try to find someplace like a restroom and go into a stall and let it all out.
5. I’ve had improvements with my symptoms, some old symptoms have returned as I’ve been under more stress than in childhood, and I’ve had some cognitive regression over extreme stress and side effects from medication have led to a worsening of autistic symptoms.
6. I have bipolar and a hormone imbalance as well so I’ve had to learn to pick up when I’m losing control of my emotions and just talk my way through them. It’s like CBT; I re-direct my thinking. If I’m very negative about someone, like saying I hate them, this voice in my head says ‘no, you’re just angry at them.’ I’m on anti-depressants now which helps to regulate my emotions.
I did have alexithymia once and do come across some confusing feelings, but I always analyze them so that I can ‘name the emotion’ I’m having so I’m better able to understand it and cope with it.
7. I don’t I’m on the disability support pension.
8. I’ve heard that when women menstruate or even before when going through pms, dopamine release is decreased, and so a person who already has problems with dopamine release (like me being ADHD and bipolar) get worse executive function, tiredness, as well as worsening of mood disorder symptoms. Recently I have noticed a heightening in sensory sensitivity and such poor emotional regulation to cope with it. I’ve been struggling to write my next blog so I’m really surprised I’m able to write like this. I’ve been sticking to my routine more than usual too. Two weeks ago I had no choice but to let go of it (I’ve been trying to write a post about it) and was fine, but when pms started I just went straight back to the old routine.
9. Nope. I enjoy the intensity. I usually have the opposite problem; I don’t get intense enough and I start to miss loving and knowing so much about a topic. People also think my ability to recite a lot of information on is some unusual trait to have, but to me it’s normal. And I do like to be different and shock them with all my weirdness.
10. Ah yes, I have. In short I developed bipolar, seizures, OCD, tics, hair loss, severe appetite suppression and weight loss, hypoglycemia, hallucinations, etc. It was a wild ride. There was some ADHD symptom relief and I was able to accomplish many things, even feel pretty damn smart for the first time in my life, but I completely lost control of myself. My social skills improved because I became manic though.
I think I became manic from day 2 and didn’t experience further complications until a year (although I remember shaking a whole lot in the first few weeks I took Ritalin), and then when I foolishly went back on it my side effects got really bad. Then following developing PTSD (this might be year 3 on the pills) I could no longer take Ritalin because they made me too impulsive.
I still have many of those side effects even though it’s almost been a year since I stopped taking Ritalin.
1. I also prefer to be at home and don’t like to travel. It is because I feel good at home, so I don’t see it as a bad thing. It has become more pronounced with age, but that it because I have become more aware of which factors that make my life good VS bad.
2. No, not in my case. I also don’t need to pass for anything at home, I can just be myself.
3. YES!!! (and I asked this question;-). The most problematic aspect is flying. It tends to trigger panic attacks and can trigger severe, long lasting intense panic attacks. I think it has to do with the cabin pressure (it is an extremely intolerable physical sensation that triggers it, and it usually starts a while into the flight).
Coping strategies for flights: walking, sensory tools, exercises (like PMR exercises), keep head as low as possible by leaning forward (to prevent dizziness), lying down if possible (if here are empty seats), extreme caution when eating (to avoid stomach pain), drink plenty of water, bring my own music and head phones.
The coping strategies mostly work to prevent looming panic to go out of control; once out of control then nothing is really effective.
Navigating airports is a problem too: sensory overload, navigation, practical management, sequencing…
Coping strategies: ear plugs, sunglasses, headphones with music, good preparation.
4. Coping strategies for flights: above.
Coping strategies for various panic attacks: drink water, keep head low (to avoid fainting), movement, fresh air, cool down (air conditioning, touch cold things) … but generally a full blown panic attack can’t be stopped and may end with passing out and perhaps more panic attacks after that. Luckily, it is very rare I have panic attacks nowadays.
5. No. I find that my coping strategies have vastly improved through my life, and almost “exponentially” during the last decade. They have improved for different reasons.
– Socially: through the accumulate effect of experience, learning (theoretically) and social feedback: better social understanding and skills enabled me to get closer social relations and learn more from social situations, so I got more positive experiences — It is a self-enhancing effect. It also helped a lot to learn about Aspergers’ syndrome and especially read others’ experiences.
– Sensory: psychological treatment (I use the word because it means specifically professional assistance – psychological assistance can also mean advice from family or friends), experience, and learning/reading about sensory issues online (especially reading others’ experiences that resonated with mine)
However, while my sensory coping strategies have improved, it seems that my sensory sensitivities have worsened?
– Executive function: psychological treatment, experience and lots of practice, lots of trying and working to systematise my life in many ways, of which the majority didn’t work. It has also helped a lot to learn online about others’ similar experiences and their tips. For example, the single biggest improvement has come with using the app Todoist, which I learned about from Nattily’s blog.
— All that said, I don’t try hard to fit in anymore, especially not where I’m not even interested in people anyway, so my tendency to drift around by myself (also in a social place) may have both lessened (because I’m more readily accepted) and increased (because I don’t get as stressed about being visibly an outsider when that is the case, and don’t try so hard to pretend that I am not)…
6. “How do you cope with strong emotions, especially strong negative emotions?”
with exercise, such as running, and in other physical/sensory ways. Other methods don’t help.
“How do you support someone going through a very difficult time emotionally (nothing practical to be done)? ”
I try to just be there next to them and listen if they say something (the “empathic dog” method… that works best:-)
“How do recognise what the feelings are, and how do you respond in a way that comforts the person?”
If it is my husband, I’ll as him what is wrong and give him a hug. With other people, I can’t really comfort them and don’t recognise their feelings unless they explain them. But if they do, I’ll listen and use the method mentioned above.
7. I haven’t found out to do that, apart from being driven by financial strain.
8. Ability to cope goes down about a week before menstruation and I get more emotional during that period. I think that is perfectly normal/typical for anyone
9. No. But maybe that is not a bad idea
10. No.
That is interesting. My husband and I are also from different cultures, plus we are immigrants here in Australia and speak together in English (not native to any of us).
I find that moving to Australia has made the social aspects of life much easier. Just like you say, “Any minor oddities will naturally be attributed to cultural differences”. I’m much more solitaire than most people and too much to fully attribute to cultural differences I think, but still – the cultural difference gives me more space:-)
Also, because my home country Denmark is culturally fairly homogenous, social nuances are often too subtle and complicated for me to handle. Australia on the other hand, is a country of immigrants and hosts a huge diversity of cultural backgrounds. It “expects differences”, whereas my home country tends to “expect sameness”. That makes my home country a much more difficult place to get along in:-) I look like anyone else, but it doesn’t take long for people to pick up the little subtle cues that I just don’t quite meet all the criteria of whatever signifies an OK person. They may not directly hate me or criticise me, they just quietly decide that they are better off without me as a friend / on the team / whatever.
I can definitely relate to this. One of the reasons my husband and I wanted to move to the US from Ireland was because we liked the diversity here. We have moved to a large, very open-minded city, and we already feel so much more freedom to be ourselves without anyone commenting on it. It’s also why I’ve always loved cities, the bigger the better. It’s easier to make your own community in them I think, and in making a community of your own choosing, you also get a lot more say in the rules and etiquette.
Perhaps it is the reason why a lot of different people migrate to countries like the US and Australia:-)
I don’t like living in cities though. I wasn’t able to make/join any community when I did (thinking about when I lived in Copenhagen), and it is very stressful to be isolated in the midst of a lot of people. I have found more tolerance and community on the countryside, even though people there noticed me more and probably found me a bit odd or different from what they were used to. Right now we live in an outer suburb, so that is neither city nor countryside, with (some) very friendly neighbours.
I grew up in a small town – had in many ways, looking in from the outside, quite an idyllic childhood – but the sense of ‘tight knit’ community that so many others loved, I found suffocating. My family was considered prominent and everybody had an opinion – good or bad – about us. I was always so-and-so’s daughter or sister or niece. I was never just me. Coupled with the fact that I was also a bit odd, as were my whole family in lots of ways, I could not wait to get out of that fish bowl. I love the anonymity of a city, love losing myself among everyone else, but I think at least part of that is as a reaction to my childhood experiences. I also like all the stimulation a city provides – there is, literally, so much to look at – although the downside of this is that I let it distract me too much sometimes; the noise of the city drowns out the noise in my head, and instead of facing what’s inside, I concentrate on everything that’s outside. It’s just easier. I could see myself living somewhere extremely remote later on, however, perhaps by the sea. Thanks for getting me thinking about this.
It is interesting to see it from that perspective.
I never felt anonymous living in the city. I felt that in a big city, everyone is expected to have lots of friends and interact with people at a high level, and life is expected to be fast paced. Whereas in the country side / more calm surroundings where there isn’t as many opportunities and “social competition”, the acceptance is higher… So if you are just friendly and helpful, then that is good enough, it isn’t necessary to have lots of friends, look in a certain way or be an “insider” of any kind.
That said, my perception is framed by my most likely rather superficial idea of the people in the places where I have lived. I haven’t grown up as such in the countryside (although my dad did have a farm, we primarily lived in a flat in our old working class city suburb – so we had 2 places as a family). I don’t usually really know how others perceive me, e.g. the neighbours, I am just guessing. So it could be the case that 95% of everybody who know who I am in the area where live (but whom I don’t know) think that I’m a weirdo, idiot or something else negative. All I’m basing my impression on is 3 – 4 neighbours who regularly talk to me and who are being very nice to my husband and I (and that I haven’t experienced anyone being not nice). I have lived in the country side for quite some years as an adult, mostly in connection with short term contract jobs as a farm hand (where I rarely had much idea of whoever else lived in those areas, apart from the farm where I lived), but I also lived about 4 years just in a rented farm house, just by myself. I knew people found it strange that a young girl (back then) lived all by herself out there and didn’t really go out, have friends etc, but they seemed curious, friendly and helpful about me, not hostile (as far as I could see).
Re. your experience growing up in the countryside, that is a very different situation. You would be likely to know a lot more about “what people think” (and worry about it), and other kids would compare you to themselves… kids are way more judgemental and cruel, especially when they are of school age. I can very much see where you are coming from, and it is quite likely I would feel the same way had I grown up in similar circumstances.
Also, our experiences are probably not from the same country, and in my case there is also an age factor… My experiences with living in the city are mainly from Copenhagen when I was young. My experiences living in the countryside are mainly from when I was much older, and starting to have much better social skills compared to when I lived in the city. That probably plays a big role as well. My current experience is in Australia, in a completely different culture, where I am a foreigner. So it isn’t a simple comparison of just city VS countryside VS outer suburb.
I think what you say is very true. I think age matters a lot. I think it’s great to live in a city now, but I don’t know how I will feel in ten years time. I think our needs change, and also everyone’s needs are different. My husband and I like to say that there is no perfect society (sadly) but if you’re lucky you can find a place that ticks some of the most important boxes for you. Also, I do have to wonder what my perception of my home country would be if I hadn’t lived there my whole life. I sometimes wish I could enter an alternate reality, and see Ireland from a visitor’s point of view, and trying living there as an adult, maybe having grown up in the US first. I have lots of parallel lives like that.
You don’t need to grow up somewhere else to find out, living abroad for some years has that effect:-) (but – although without having ever been there – I wouldn’t recommend the US… Try Australia!)
I’m really glad I moved to Australia, and see my Danish culture in a different light now. I’m not feeling threatened by it the way I once did when I was supposed to fit into it and didn’t, I don’t feel that pressure any more. I can see a lot of areas where I do actually represent my native culture when I compare with other cultures – where I am “typical Danish”, but when I meet other Danes then I still feel very alien from them. Now perhaps though, they seem to think that me being different has something to do with the fact that I have lived in Australia for many years… “Foreignness” can apparently also be earned:-)
Correction:
About 2 and a half years, not 4, sorry.
My husband’s family is Korean and they’ve been not only terrifically accepting of me but also very willing to accommodate whatever unusual needs I might have when visiting. They attribute everything (food preferences, sleep habits, need for timeouts, etc) to how hard it must be to spend weeks living in a very different culture/surroundings which is wonderful.
What you say about a country of immigrants vs. a more homogeneous country is interesting. The US is also very much a country of immigrants but I think there are also strong expectations of what is “normal”. Maybe this is because I was born here and so people’s expectations of me are different as a native citizen than they would be someone who is an immigrant? Because it really does seem like a melting pot type country should be easier to blend into than a more homogeneous society.
Perhaps the U.S. is less of a country of immigrants than it used to be? I’m not sure what the ratio in Australia or the U.S. is, but here in New Zealand 24% of the current population were born overseas. I think being such a diverse population means that it’s not so easy to define what could be considered “normal”.
I think the operative idea (for me) is coming in from outside. I think every country looks and feels differently depending on whether you were born in it or not. I think some countries are more accommodating than others of differences, if they think it’s caused by being originally from someplace else. Then I believe there are cultures that are very limited in what differences they can tolerate, no matter the ’cause’. I also think that different cultures, and countries, will tick different boxes for different people. Due to my attitudes and beliefs, I will feel more comfortable in some places than others. Being ASD does complicate matters and now I see that, for me, it’s not a simple ‘let’s just move’ fix. If I get comfortable here, and live here for a long time, people may start to expect that I should know, and follow, their ‘rules’ like a native would. Everywhere has rules – everywhere.
I will be digressing in this paragraph, so feel free to skim read or skip over completely… Cynthia’s comment about her in-laws made me feel a real pang for mine. They have a wonderfully convoluted migratory history, and are currently in Ireland, and they were, without a doubt, the hardest thing to leave there. They know by now that I am not considered ‘normal’ no matter what culture you put me in, but they embrace me – they’re not so ‘normal’ themselves. In fact, they spoil me. It’s like being a carefree kid again (or what I imagine a carefree kid might have felt), visiting them, but I still get treated as an adult with interesting and intelligent things to say. My husband says I become visibly relaxed the moment we arrive at their house for the weekend. He might get to put to work doing some DIY or computer-related task, but I just have to sit at the kitchen table, eat my favourite foods, share in my father-in-law’s love of good wine, and read the selection of Sunday newspapers that are already waiting for me when I wake up. They like the stories and noise I bring into the house apparently. They WANT me to talk. I feel bad for my husband because he does not get anything close to this reception when visiting most of my family… I think coming into another family is a little like moving to another country. Sometimes it’s easier because you’re an outsider, because there is a lot less baggage, a lot fewer preconceptions. On the other hand, there are families who are very uncomfortable with outsiders.
What strikes me most about my parents-in-law is that they retain a vibrant curiosity about the world. This keeps their minds open, to new experiences, and to all sorts of differences in people. This attribute is, I feel, rarer than I would like it to be. I love too how my father-in-law and I can have (very) contrasting opinions on several emotive issues and we will argue them out over the Sunday papers, but never do I feel stupid or judged or like I made a terrible faux pas. I feel enlightened, invigorated, and I know our relationship is the same after the ‘argument’ as it was before.
Your in-laws sound like really great people – being able to just relax and be yourself, hell to actually be wanted to be yourself, that’s seriously wow.
I adore them. I know that being their daughter-in-law is not the same thing as being the child raised by them. The dynamic is completely different and sometimes this is a good thing. My husband, however, also has huge respect for them as people, so it’s not simply outsider-bias and rose-tinted glasses on my part.
I cannot be myself around my own family in the same way, but I’m starting to side-step the blame game on that. I’m beginning to see that sometimes, with some people, it can simply be a case of ‘Brain does not compute’. For them and me!
I haven’t worked out how to cope with my family yet – sometimes I have to take a step back and put some space between us for a few days but then I feel guilty (and am made to feel so). It’s complicated and so I escape into my head instead – I can control that!
You obviously found a good ‘un with your husband 🙂
Your in-laws sound like they really “get you” on a basic level. How wonderful that you feel so embraced by them and comfortable with your visits. I think that’s a rare gift in a marriage.
I’m beginning to think that’s a rare gift anywhere. I feel very fortunate to have a small, but very worthy, collection of oddballs or oddball-supporters surrounding me. Seriously, I don’t know how I managed it. It’s like all that time I was busy trying to pass, just trying to keep my sanity afloat, there was another part of my brain that knew what I really needed and went about slowly and quietly gathering the tools and support I would need for when the time was right. Still working out how to deal with my family in a healthy, and non-exhausting, way however. We have a narrative that we’re close, but I don’t feel it. I’m quite fond of most of them, on an individual level, and we share some fantastic stories and memories – many of which revolve around my Dad – but as a collective they put me on edge. Why I feel this way around them, I’m still trying to figure out.
My husband has been pretty neutral on the subject of my possible autism for the past two weeks, a subject I talk to him about every single evening when he gets home from work. Then today, over lunch, he spent some time politely quizzing me about my evidence, my plans for a professional diagnosis, and whether I was keeping an open mind to other possibilities. After twenty minutes, he said he thought my approach was ‘sensible’ and we moved on. Several hours later, he said ‘I actually think you are autistic’. I found the moment weirdly romantic, and then I laughed for a good five minutes at how absurd this scene would have been to me, to both of us, even a month ago.
I’ve told a friend too, and she’s going through a difficult health diagnosis at the moment as well. We leave voice messages for one another updating the other on our progress, on our research, on any ideas we have for the other person. I think I would have found this hard to do if it wasn’t ASD. Before self-diagnosing, I would not have been any good at mutual reciprocation. I wouldn’t have even tried it all that much. It seemed as if my friends and I took it in turns to emotionally unload. I was always worried about burdening them, and I know they felt similarly. This kind of honest sharing, of going through challenges together, though they are different challenges and we are thousands of miles apart, feels really good in comparison. It feels like maybe this is what real friendship is. The irony of this – that I possibly discover the secret to truly meaningful social interactions while coming to the conclusion that I am ASD – is quite delicious!
Your last three sentences went straight to the collection of favorite quotes.
Quotes are a great collection to have, and I’m very pleased that something I said might be worthy of appearing in such a collection 😊
How lovely to have such neat parents-in-law! 🙂
I’m not sure. I have feeling there is a lot of regional variation. I’ve definitely felt less out of place in some parts of the country than in others.
I think that is the case. I think that is the same here… Aussies have different expectations to other Aussies than they do foreigners like my husband and I.
(My first reply ended somewhere else on this page, and I can’t find it!)
Ha, yes that is wonderful.
anonymous answers:
Q1: I used to be this way — I’m 35, and have a job that requires extensive travel on occasion (I’ll travel heavily for six months, then not much for six months, then heavily again…). I don’t hate the travel itself, but I do hate being away from home. Not sure if that makes any sense — no problems when I’m actually traveling, but I dread the *idea* of being away and kiss my bed when I get home.
Q2: No idea
Q3: Yes. Yes. Yes. Despite the amount of time I spend traveling, which is significant, I can’t STAND longish flights. After about 3 hours, I start to go nuts. When I’m traveling across the US, I almost always book a connection midway. If I can’t… I don’t panic, so much as get frustrated and annoyed and angry, and I don’t have a good solution.
When I travel overseas, I make sure to go business class or higher. They keep you distracted with food and wine and entertainment, and good seat-beds mean it’s possible to sleep. Fortunately, I’m fascinated by the concept of air travel, so I can kill an hour here and there looking out the window, too. But even still, I always want OFF THE PLANE ASAP for most of the flight.
The thing that prods me to board the plane in the first place is knowing that the travel is directly related to my keeping a roof over my head.
Q4: Poorly.
Q5: Yes. I’ve described myself recently as “becoming a caricature of myself,” because as I get set in my ways, my Asperger’s symptoms have gotten stronger than when I was younger.
I suspect it’s because there’s less pressure NOT to have those symptoms, if that makes sense. As a kid in a classroom, one doesn’t have a lot of options (at least when I was in school), so one attempts to fit in. As a young professional, same deal. But as a senior professional, in an industry where “eccentricity” is acceptable, I’m free to be myself — which may not be a good thing.
Q7: It ain’t easy. Negative motivation is the only way
One – Family members. First, they actively encourage me. Second, I’m terrified of embarrassing myself in front of them, so I force myself to do it.
Two – Financial reasons. When it becomes evident that I’m going to have trouble affording a place to live or my electric bill, that becomes a powerful motivating factor. I get into an “automoton” mode — ignore emotions and fears — and just plug along, usually for a full day. After that I need several days’ recovery/rest.
Q9: I find that outside influences (like the “open office” that I’m stuck working in, which exhausts me daily more than any physical workout I’ve ever done) can impact my ability to pursue my nerd-hobbies. I’ve yet to have a case where my nerd-hobby impacts work (i.e. life), but I *have* gone out of my way to get jobs in fields related to my obsessions.
Q10: I couldn’t get anything done in my horrible, horrible office without Adderall. I hate what it does to me mentally (kills creativity and makes me a weird horny robot), but otherwise I’d have lost my job a long time ago.
anonymous answers:
Q1: Yes, so much planning and stress and what if’s. I used to not care, not it’s a huge undertaking that seldom seems worth the hassle.
Q2: Not for me.
Q3: I almost never fly, so I’m skipping this one.
Q4: I can shut pretty much everything if necessary. Gonna come out eventually, but I can usually manage to hold it off until I can be alone.
Q5: Yes my coping has improved, but yes I’m also more autistic because I’ve stopped trying to hide it all the time. Fuck it, this is who I am.
Q6: I just avoid because I don’t know how to handle it. I let other people deal instead.
Q7: Hunger, mostly. Need food and gas, so I’d better find some source of income. Doesn’t help that I’m damn near unemployable in the open market, but I try.
Q8: I cope less well in general, figured it was PMS or whatever. Unsure about sensory stuff, sometimes that amps up but I can’t think if they’re related.
Q9: Sometimes. Often I just burn out and am forced to take a break because I just have nothing left for a while.
Q10: Have taken, didn’t react badly but didn’t like how they felt so I quit. I self-medicate with green tea pills (Mega Tea usually) which I find works far better for me.
anonymous answers:
Q1: I have experienced this as well. I’m damned near agoraphobic at this point, as regards leaving home. I do not do well with it at all. I used to enjoy travel, such as it was, when I was younger. I’m 63 now.
Q2: For me, it’s being far away from the security of my home environment. I never think strangers would react to me any differently than home NTs would.
Q3: Oh, I cannot fly at all. I have had to several times and I will never do so again. It’s a nightmare. People jammed in next to and behind and in front, severe anxiety and fear, and claustrophobia of not being able to have enough fresh air to breathe.
Q4: My panic attacks are quiet, a coping I had to learn in childhood to survive. People don’t notice, and I never go to parties or fairs, etc. I only lost it once when being reviewed for jury duty.
Q5: I never knew what was wrong, and am self-diagnosed recently. My only sibling was autistic. I did learn to cope, all on my own, with much difficulty. Since I had breast cancer surgery in ’06 and lost my job in ’08, I have really deteriorated in how I feel about being with people. And I am older, too.
Q6: If they are mine, I shut down and isolate. If they are others’, it depends if I know them well. I’ve learned to understand that some feelings are pretty much the same across the board, so I apply my experience. And my empathy.
Q7: I don’t anymore, am finally on Social Security. It used to be fear of homelessness.
Q9: Yes, or because I have plateaued in my expertise and have gotten horribly frustrated by that. Sometimes that’s the end of that interest!!!
anonymous answers:
Q1: Travel is definitely demanding, but I can do it. It’s easier if I’m not alone, or if my schedule is already laid out for me (like at a conference). I’m in my thirties, though, so no idea how this might change as I age.
Q2: This only applies in a country where I’m supposed to be able to speak the language. I read several languages fluently, but I only speak one second language with any amount of proficiency, and it’s pretty rusty since I haven’t lived in the country for (yikes) eight years now. I had the opportunity to go there recently for a conference, and I had to say no because the idea of going there and struggling to speak another language all.the.time (in a totally unfamiliar environment, among professional contacts whom I wanted to impress) was causing me so much anxiety. Not great for my career, but good for my sanity, I think.
Q3: Planning and timing flights is always hard, no matter if they’re long or short. And I hate not knowing where to go once I arrive somewhere. Otherwise I do okay. I prefer to be pretty antisocial on planes, though–buried in a book or crosswords or an iPod.
Q5: Thus far (though mid-30s may not qualify as “getting older”) I can cope with things a lot better than I did as a kid and teenager. Social situations are a big one. Most people don’t actually realize that I struggle socially because I’ve learned to pass so well. But that was hard-won by years of painful experience when I was younger. Psychological help (antidepressants, anti-anxiety meds) was also key, and I didn’t get those till my mid-20s.
Q6: I think I’m a good listener, able to empathize and/or problem-solve depending on what’s needed. I guess I just remember my own painful past experiences and what I needed from other people at the time. I deal with my own strong negative emotions by talking them out (only with my wife, not with friends), stimming, or getting into a special interest, which soothes and centers me.
Q7: Only by the knowledge that I have no choice–i.e., that I’ll be jobless if I don’t do it!
Q8: No.
Q9: No, thankfully. 🙂 I can go right on obsessing.
One thing I’m finding very reassuring from these answers is that a lot of people seem to be finding themselves exhibiting more autistic tendencies as they get older – albeit a lot of it is not feeling the need to hide them and conform. Sometimes I wonder why I’m only just noticing my traits now in my 40s but now I feel more comfortable with that because I know how much it was drummed into me as a child how important it was to not be different (‘what will the neighbours think’ has been a popular saying by, yes you guessed it, my mother) and so it makes sense that it’s only now that I’m grown up (well, sort of) and independent and not stuck in an office trying hard to fit in, that I can actually be myself.
And some people find going out a lot harder now they’re older and I’m thinking ‘oooo me too’ (do excuse me if I get a little excited only I’m not used to other people preferring to stay home!)
So it’s good. It’s like finding that you were adopted and your natural family are actually just like you (not that I’ve ever fantasised about that or anything you understand, no not at all…..!)
I swore to myself I was going to leave any more commenting until this evening, when I’ve made a dent in today’s massive to-do list, but I just HAD to respond to you Liz. Once I managed to stop laughing, that is.
I did this all the time growing up. I recall begging my older sister to admit that I was adopted. I was half terrified, half hopeful, that she would finally crack and acknowledge what I felt sure had to be true – that I didn’t fit. I think there was a part of me that understood I didn’t fit into the outside world as I knew it, and my solution to that was a new family. A new family (however much I did love the old one) would make me feel understood inside and outside of the house. And in a way I was right. Because, on this site I feel accepted; I feel inherently understood and valued, in a way that I haven’t before. ALL of my quirks have found friends here, and there has been none of the aching struggle to communicate and the fear that I am being misunderstood until the tenth time I try a thought out. This means that now I seem to care a whole lot less what the outside world thinks of me. I have found my place in it, and that is all I ever wanted.
This is not to cast aspersions on my husband, my few friends, or even my family. Somehow in the midst of trying desperately to pass, and failing at it perhaps more than succeeding, I managed to find some loving people who are more than a bit quirky themselves, and even when we don’t fit perfectly together (that’s an impossible ask to manage all the time with anyone), our differences – to each other, and to the world – sit companionably side by side.
And I love to stay at home. I used to get upset when I would read another book or magazine article and the people in it were getting so excited about another night out. I couldn’t seem to find ‘me’ anywhere. And when I did go out, to a pub because that’s how we socialized in Ireland, I couldn’t understand what the hype was about. These conversations were boring! No wonder people drank so much. I was drinking too just to give me something to do! I think it’s interesting that my husband and I only moved past our initial (very) antagonistic acquaintance when we took a break from our large and loud university social group and actually started talking to one other as real people.
🙂 Amen to your second paragraph. It’s so nice to find other people who feel the same way about stuff and have the same quirks instead of having people look at you as if you’re odd because you don’t feel the same way as them. I’ve stopped going out for the odd lunch with one friend (he’s also now a client but one that I’m going to be sacking!) because conversation was awkward – he’d have lots to say about stuff he’d done and I’d have nothing to say. Not because I don’t do anything but because I can’t think of anything on the spot and because he’s not going to think ‘hey wow’ if I go on about sharks, or all the classics books I’ve bought recently (and the two bookcases!) or how I’m teaching myself Greek but it’s going really slowly but that’s okay….
I used to go to the pub with friends when i was at school – god that was dull. And we went to a club once where it cost a fortune to get in, long queues and the highlight (I kid you not) was getting patted down by the female security guard on the way in. Thank god I don’t have to do that any more!!
It seems like a of people (and maybe moreso for women?) become more comfortable with themselves in their forties. I definitely have been feeling less like I need to conform to some imaginary ideal since I hit forty and that coincided with realizing that I’m autistic. Though I think for me, the actual realization had more to do with no longer being able to effectively pass/use all of the complicated coping strategies I’d developed when I was younger.
I’m smiling at how excited you are to discover that other people prefer staying home. Having people comment along those lines on a post I wrote about it last year made me feel so much better about having long stretches of days where the car never leaves the driveway. 🙂 It’s amazing how validating it is to just hear that there’s at least one other person out there who thinks the same way you do!
I spend so little on petrol now it’s great! And when I renew my car insurance I don’t bother considering whether I need the option of a courtesy car if mine’s off the road because apart from one client visit a month my only trips out are to buy milk (I could walk that easy) or the post office to post a parcel (which could be picked up) – it’s fab.
Next week I don’t have to go anywhere – bliss! I’ve got one courier coming (from the lovely people at Amazon sending me my new shark book – yay!) but that’s the extent of my interruptions. That’s MY idea of a good week. When someone lists their forthcoming activities in a long list I don’t think ‘oh how exciting, you lucky thing’ I’m like ‘oh you poor bugger, I’d hate that’. But I’ve learnt not to say it!
Man, I would love to go to lunch with someone and have them talk to me about sharks! By the way, can you recommend a couple of books? I was a bit daunted by all the options on Amazon. I also cannot believe you are learning Ancient Greek – that’s fantastic. I did Classical Studies in school and it was one of my favourite subjects. I’ll be honest though, all of those ancient Greek and Roman names were not ideal for my autistic brain to have to pronounce while reading out loud in class! I have some verbal language issues.
I am seizing upon your description of a good week being one with a lack of interruptions. It is indeed validating to know that others feel that way too. I also never thought of using that particular word to describe how I feel when I know that this week I have to make a phone call (HATE phone calls, making or receiving), I have to take in a furniture delivery (people in my house! I have to talk to them! I have to clean up after them!), I have to do any number of seemingly small things that involve me interacting with the world in a way that I find tiring or just boring. My Mum used to say about going to mass on Sundays that it was only one hour of my week, but I knew that it was so much more than that. It was all the time before and after, preparing for it, recovering from it, dreading it. It was having a hole punched into my day, a hole that could never be completely smoothed over, even when I was back home again. It probably didn’t help that I am not religious, but I also felt the same way about school. True freedom for me is the freedom to do nothing.
When I have heard people talk idly, or wistfully, of quitting work (say after a big lottery win), I am always surprised at how many say ‘Oh but what would you do with your day? What reason would you have for getting up in the morning? Sure, you’d have no purpose in your life’. I always just thought these people lacked imagination. In answer to that first question, what would I do: um, EVERYTHING.
You need to move to England! Well Amazon is in the process of delivering me ‘Sharks of the World’ http://www.amazon.co.uk/gp/product/0691120722/ref=oh_details_o04_s00_i00?ie=UTF8&psc=1 which sounds like it could be good. I’ll let you know! (I know that’s the UK site but I’m sure you’ll be able to follow it through)
I struggle with the names too and I hated reading round the class!! I’d spend the whole time either dreading my turn or recovering from it. Not the best way to take in The Iliad!
I am so with you on the phone calls – I rarely make any except to my folks. And I rarely answer any either! I have caller display and unless I know who it is and actually want to speak to them I don’t bother. I don’t give my number out to people unless I really have to (like furniture deliveries!). At least the Amazon courier won’t come in, and if necessary he’ll leave it outside the door. But I do wish he’d come earlier as I won’t settle till he’s been and gone, and I seem to be at the end of his delivery run. People don’t seem to get that even a small thing like a delivery is a big deal. It is a hole in your day and you’re spot on that you can’t smooth it over again. It ruins the day. I always have to try and schedule appointments and visits as early in the day as possible otherise I’m totally writing off the day and getting worked up thinking about whatever it is that’s happening. And I have to stagger them so I’m not doing too many (like more than 2 tops!) in one week. Or alternatively I stick everything in one week, keep telling myself it’s nearly over, and then have complete avoidance of mankind for at least a fortnight afterwards (with very little after the fortnight).
A big lottery win – no 1 sack ALL clients, no. 2 look for my perfect house (room for lots more bookshelves, a big garden to grow lots of vegetables, no near neighbours), no. 3 do a really big order on Amazon of all the books I could ever want, no. 4 put my feet up and start reading – all those subjects to learn about. Pure and utter bliss! I wouldn’t have time to be bored – all that reading, studying and gardening, plus more time for my pets. But I’ll settle for winning a million on the premium bonds on 1st August!
Maybe my husband and I will need to put it on our list of countries to live 🙂 It is sad that I never saw all that much of the UK, though I was a next door neighbor for three decades. I guess I always thought I’d be that close and so could visit anytime I liked.
Thanks so much for the book tip. And for being the reason I read up on all the Jaws plot lines last night. I’ve watched all of them a dozen times each, even 4 which I really didn’t care for, but it was Jaws so had to be watched if it was on TV. I think the first one was my favourite, though 2 was in some ways more haunting. Not sure if that’s exactly the word I mean, but it will do well enough. The shark interest is definitely happening. There’s no turning back now.
I am still actively amazed that there are people who think, and feel, the same way I do about so many things, and in some cases think and feel almost exactly the same way. I will try and lump everything into the one week too, or even over just a few days if I can manage it. To get it all done, I will go into a completely different, not altogether ‘me’, headspace. Other weeks read like this: Monday – phone landlord (aaagh!); Tuesday – post letter, which will involve going to the post office (maybe I can put it off til Wednesday); Wednesday – post letter, and do the laundry (which is irritating, but I love having lots of clean clothes); Thursday – nothing!; Friday – receive delivery (please don’t come, please don’t come, I can’t manage it today).
I think what bothers me so much about seemingly small things, like receiving a package or taking a call that I know will be very quick, is that it reminds me I am still not outside of the world’s grasp. It can come find me whenever it wants to and impose its will on me. Given that I have to go out in it and pretend to be someone I’m not sometimes, I feel like I should at least have the right to forget it exists when I’m inside my own home. I just want the option of completely tuning it out sometimes. Interruptions to me therefore feel very personal. Acknowledging my ASD has made me even more inclined to be solitary. It’s like my reward after all the years I spent trying to pass. I’m claiming back those fifteen years where I thought I had to be a different kind of person.
It’s always the closest places that don’t get seen. I’m half an hour on the train away from London and all the glorious museums but don’t visit. Admittedly now that’s a lot to do with preferring to be home and not wanting to be surrounded by people etc. but when I did venture out more I didn’t go. I could kick myself now…
I very between preferring 1 & 2 – 1 is good because it was the original, and because it feels more alone. Although there are 3 of them on the boat at the end (well until one gets eaten!) which is 2 people too many for my liking, it still comes across as being in the middle of nowhere (well it is) and away from civilisation. Which is great, until your boat sinks and you’re near a Great White. So it’s got appeal there. No 2 I like because the sun shines a lot on the sea and that makes me happy. I always feel bad when the girl dies shoving Sean Brody up onto the upturned boat – not sure why since I don’t care about the other victims. Maybe part of the appeal of No 2 is the difference between it and the original… I don’t know. I have to admit that I also enjoy doing the sound effects – there’s the victim being pulled under and doing gurgling screams (my particular favourite), Tina’s ‘sh-sh-sh-shaaaarrrrrrkkkkkkk!’ and I also feel the need to throw myself around a bit waving my arms in the air like I’m being dragged through the water at top speed by the shark like Tina’s boyfriend (whose name temporarily escapes me). Oh it’s fun!
It’s so reassuring finding that others have similar or the same feelings about ‘stuff’. It’s somehow validating. Finding out that some other than me struggles to get to the post office at times – that’s like wow! And I’m just had an email from Amazon saying that they’ve sent out my other parcel and that will arrive Tuesday – so that means I have deliveries Monday AND Tuesday! No, please make them both arrive Monday – it’ll save the courier an extra trip?! I actually sometimes pay extra to get things delivered quicker just so I can specify the delivery day and get several things arriving together instead of on several different days.
I love your last paragraph – I’ve never thought about it like that! It’s so perfectly spot on (another one to be kept , this time for when I’m trying to explain to others why I’m stressing at the thought of having more than zero things to do in a week that involve other people or me going out (dog walks excepted – my dog gives me security)). Realising a few years ago that I was very introverted made me allow myself to be more solitary, and now realising that it’s Asperger’s has got me thinking that not only am I going to be solitary when I want but also that it’s perfectly okay to be so. 🙂
Yes, I’m kind of looking forward to eventually breaking the news to friends back home that I’m ASD and so I will not in fact be joining them for a night of excessive drinking and dancing in clubs I hate. There is one pub I actually do love at home but I like to leave before it gets loud and messy. I also accept that I should not drink more than a unit of two of alcohol and this is probably going to be the most controversial change to some of the people I know (none of them very important to me, however). I do feel bad because I not only fooled myself a lot, I inadvertently fooled other people, and now I’ve just suddenly changed. I’ve become a completely different person as far as they will see. I understand the confusion they might experience and for that I feel bad but not enough that I am going to pretend to be someone I’m not again.
I have bursts of being extroverted, but I suspect that some of these have more to do with being over-stimulated and talking is my way of dealing with this. If I need someone to talk to, but I’m alone, I will go out and seize opportunities to make small-talk with people I come across. I have discovered that, on a good day, I can manage small-talk for a maximum of five minutes, even if it’s with a lovely neighbor. It just gets uncomfortable after that… I also noticed recently that I have my body positioned away from the person almost the whole time, always ready to make an exit. The funny thing is, I think I started doing this for other people’s benefit. I was so conscious of boring people with all my talking that I figured if they saw me angling away from them, they would know that I was planning to leave soon and they wouldn’t have much more of the conversation to go. And if they were enjoying the conversation, I thought that they wouldn’t notice what I was doing, because I don’t notice those things. I just hear the words mostly.
Hopefully you’ll find that the ones that matter are happy for you in that you’ve found the real you. If they’re not then they’re probably not real friends.
I think my next-door neighbour (who strangely doesn’t seem to have fully moved in yet, despite having owned it for a few months now) probably thinks I’m completely barking. I’ve chatted to her twice and both times have ended up rambling on about utter rubbish (including, with no pun intended, the state of the rubbish bags that our council insist on us using). I can feel myself descending into utter drivel but can’t think what to do to get myself out of it. And it’s not like I’m even interested in what I’m saying so god knows she must be bored. Maybe that’s why she’s delaying moving in!! I’m so much happier when I can just wave at my neighbours and leave it at that – then they can just think of me as friendly rather than total looney-tunes. Because I do the same drivel-rambling with everyone once I’ve finished analysing the weather in detail….
Oh and I’m equally useless at knowing when to end email / text conversations so I could go on replying to you for years when you’re really desperately just being polite 🙂
1. I don’t generaly have much of a problem with travelling, as long as I have a pretty accurate idea of what’s going to be happening. If it’s not what I expect, though, or if there’s a sudden change in how things are going, my tolerance goes way down and I end up spending a bunch of time by myself. I did notice toward the end of my teens I started enjoying yearly summer trips less, however shortly after that I decided to go abroad for a combined total of 6 months and greatly enjoyed it (though coming back to the US was hell each time). I can’t really answer past that, as I’m only in my early 20s
2. Not sure what you’re asking exactly, but I like foreign travel and can pass for NT in most situations, although I prefer not to try.
3. My issues with long flights are mainly tied into my inability to sleep during the flights and layovers. This can make me super emotional. I dealt with the exhaustion/scatterbrained-ness by exploring the airports to make a map in my head, setting a timer for 1 hour before I was supposed to be at my gate, listening to music, reading, playing games on my ipod, and watching movies–so mostly distractions.
4. N/A
5. N/A–feel too young to answer.
6. I generally try to distract myself from strong emotions until/unless I can figure out what they are and why I’m feeling them, which usually doesn’t happen until the intensity is starting to drain off. So… I don’t deal with them, I guess. For a friend I’ll ask if there’s anything I can do, and if not, I ask if they want to do things I know they enjoy. I don’t know how to describe/define it, but for each of my friends, there’s a distinct shift in behaviour when something’s wrong, and to confirm my suspicions I’ll ask if anything’s wrong. Depending on the person I may or may not give hugs as well.
7. Job-hunting is pretty easy for me, as the “looking for a job” process and the “applying for a job” process are different. So when I have the energy, I’ll look for jobs that I might be qualified for and leave all the applicable tabs open. Then I set a deadline with an incentive–like before I can play any videogames or continue listening to an audiobook, I have to complete x number of applications.
8. I notice mainly that my body feels different. While I normally feel warm-to-hot, I sometimes feel cold and need blankets even in summer when menstruating. I’m also way more sensitive to my hair on my neck/back during that time. It can create a weird sensation sorta like skin crawling or like my skin’s trying to get off of my body. And I’m pickier about what clothes I’ll wear. Everything else I’m pretty sure is due to the lack of energy/tiredness that comes along with my period.
9. Definitely not. I enjoy the intensity, though I probably should learn to control it better.
10. N/A
1. I LOVE traveling, but I’m picky about having the right belongings with me, not being too overburdened, and I have to be meticulously prepared before leaving to minimized unpleasant surprises or spur-of-the-moment bad decisions. 7-10 days is about my limit. Even if it’s a trip with friends and I had a good time, it takes 2-3 weeks to recover/rebalance myself. I clean obsessively before I leave so I don’t have to come home to a mess…it’s comforting to come home to a neat, tidy house. I miss and worry about my pets the whole time, too.
2. Not sure about this one. I feel equally awkward wherever I go, but persevere nonetheless. 🙂 I like foreign travel, but it can be more overloading & overwhelming processing-wise. My international travels were pre-diagnosis and usually in a group setting, so I think that helped to deflect any NT-performance issues.
3. Oh gawd the whole thing, start to finish! I feel trapped, I angst the whole time about the plane crashing, I hate being squished in the middle seat because People and I feel guilty every time I have to get up & move around, I get stiff & feel like I can’t move so that makes me panicky, the bathroom is too small, the plane is too noisy…yadda yadda. I always opt for as many connecting flights as possible just to break up the in-plane-ness. My longest flight was 9 hours and I kept taking OTC sleeping pills bc being unconscious was the best option. I really enjoy airports, though…I like the atmosphere.
4. Luckily, I don’t think this has happened to me yet. *knock on wood* I somehow manage to hold it together stiffly until I get to my destination, and then have a crying meltdown in the privacy of my hotel room/destination.
5. Yeah, I think so. Now that I have my diagnosis and know what’s been “wrong” with me all of these years, I feel less compelled to “be normal” and feel like I can just “do my own thing” more often. I guess I feel less compelled to pass as NT, or less anxious about it. I was in a constant state of dread that I would be “found out” as “crazy” for so long, or be found out as a “normal-people impostor” (sp?) so I wasted a lot of time and energy on having this kind of rigidly-organized lifestyle that kept me “in line” and having the appearance of being a functional adult. 😛 Eventually, I had a meltdown/burnout thing from age 33-35. I’ve been off of work for a year now and am finally starting to feel better enough that I am looking for jobs again. I’m anxious about going back to work, but I don’t think that being isolated and poor is doing much for my mental health at this point, and I can’t do any of the things I enjoy with just a subsistence-level income.
I was just talking about my coping strategies in therapy yesterday…I think my old ones stopped working bc I no longer had the energy to maintain the rigid juggling act and performances, so now my goal is to find new/better/more-flexible ones, now that I understand what my problems were, before. I’m also working on finding a field that is more accepting of my personality and quirks, because I was in Corporate-Land before and it was too restrictive for me.
6. I’m better at empathizing with other people, but not as good doing emotional self-care for myself. (Sometimes I don’t understand why i am so upset, like i can’t logic my way out of how I feel no matter how long or hard I think about it. Is that alexithymia?) I keep a journal and write about it until I can make sense of it. If someone is going through a tough time, I ask them how I can help them, let them know I love/care for them, and try to do little nice things now and then when able.
7. Ugh, I am stuck in job-hunt limbo right now and don’t have much advice. It’s really hard sometimes. I have to force myself past a huge apathy speed-bump to go out and work! I try to identify a range of jobs I think I am capable of, and then I work through job sites like Craigslist, Indeed, or whatever, sometimes LinkedIn. If it seems like a good fit and doesn’t give me any bad feelings, I’ll apply and see how it goes.
8. GAH YES, I am actually going to talk to my new gyn next week to see if I can get my hormone levels checked. Coping ability and energy levels plummet, I’m more sensitive to smells & noises especially, etc. I feel like I have PMDD…my mood swings are hideous, but I can’t get a doc to take me seriously about it. They just chalk it up to being depressed. I am bad at explaining things to doctors and I think I need a helper with me so I can advocate for myself.
9. Oh, definitely. I’ll feel a kind of mental malaise/exhaustion and have to take a break for while. I’ve noticed that when I do this, after enough time passes, one day it’s like I suddenly have this incredible new scope of understanding about the subject, like my mind was making more connections in the background after i stopped actively thinking about. Kind of fun, actually!
10. Nope, haven’t tried any straight ADHD meds yet. I take Wellbutrin (have had both SR & XL), and while it helps me focus more and be less spaced-out, it ramps up my anxiety. It really sucks…I long to find something that will help with the ADHD-brain side of Aspiedom.
1. If we go away and stay with someone at their home, then I need a week to recover when we return home to our place. If we stay in an apartment/hotel and we are away in the same place for a week or more then that is no problem. Up to six months is fine as long as there is an internet connection. I still need time to wind down at home but it’s easier. I enjoy being at home but travelling is something I enjoy too. For domestic and overseas trips I am always excited the night before we leave and can barely sleep. I exhaust myself! The child within me. Travel never gets old for me. I dream about living in Europe for a year or two.
2. I love foreign travel. I met my husband on my first trip overseas. Travel is a part of my life. I will only ever live in a big city because of the multicultural aspect. I enjoy being with /living in/visiting other cultures. I make an effort to say please and thank you and observe people yet I don’t feel I have to understand everything. I don’t have to blend in. Making small efforts makes our time away enjoyable. We try to go to places where you can walk a lot, so we can combine exercise, arts and food. I read up about where we go before hand. I enjoy learning languages. I enjoy trying most foods. Being in another culture is stimulating and if it all gets too much we have a day of rest doing nothing. I sketch and write a journal in the evenings on travels. Bananas are my go to food for emergencies if needing a sugar boost. You can buy them almost anywhere in the world. Duolingo is a fun way to learn new languages, also useful for the flight if bored.
3. For long flights I used to take the kitchen sink. Not literally!!!! No matter how much time I have spent planning I do not relax at the airport until we are on the plane. I wear comfortable clothes. Noise cancelling headphones. Bring sunglasses eye mask, ear plugs for the plane and the hotel(curtains don’t always block out the light). Activities to do so I don’t get bored. Kindle/iPad are better than books for travel. Less to carry but contain so much more. I usually end up watching movies almost the entire time. I then need a day to recuperate at the other end. I make a rule never to drive as soon as we arrive in a foreign country. We always have one night near the airport to adjust to time differences and lack of sleep grumpiness. I like to travel with just carryon nowadays to reduce the weight/managing heavy bags going somewhere. It saves time on arrival and you don’t have to worry about your bag going missing.
4.N/A
5. Only just recently self diagnosed with Aspergers so hard to answer this one. I am enjoying discovering all about Aspergers. I feel like I am just getting to truly know myself.
6. I am not very good at describing my feelings when I’m upset. I cannot explain why I am feeling the way I am at the time. In particular negative moods. I’ve become more protective of my time and whom I spend it with. I am beginning to care for my space. Enjoying how I want to spend my time instead of meeting obligations that weren’t necessary in the first place.It has given me freedom to be myself. I’m a good listener. However I don’t think I’m very good at dealing with other people’s negative emotions. There is nothing practical to do usually but listen. I have huge empathy but somehow little sympathy if that makes sense.
7. Not job hunting
8. In perimenopause phase so not sure what is Aspergers and what is not. I get irritable and erratic a couple of days before hand, clumsy too. And exhausted. Just want to keep warm.
9. An interest will take over everything and when I am “in the zone” I almost forget to eat and will work into the night. Things that I should be doing are left to the last minute. I haven’t been “in the zone” for a while now. My interests go in loops. Interest followed by distraction, forget for a while and back to the interest again.
10. N/A
anonymous answers:
Q1: Generally, traveling isn’t too difficult, but partially because I’m so fascinated with the mechanisms of travel that it doesn’t bother much. As long as there aren’t too many crowds and I’m with one person or a small group, I only suffer from stomach pains from tension.
Q2: See response to #1. Foreign travel is fine as long as I understand what is expected. No parties or concerts (maybe classical or choir), and I should be fine.
Q3: No – I find them easy to predict and plan for any problems. Airport maps, photos help me understand anything before takeoff and sleeping pills or GABA/melatonin supplements help keep calm
Q4: If I have a panic attack, I usually black out and or can’t stand up straight. Usually, I only have panic attacks from social situations where something is expected of me.
Q5: Yes! Coping strategies haven’t as much as I age and try to adapt to the workplace, because I’m not always able to use them. I just need a quiet space for just a Few minutes, but it’s nearly impossible to find.
Q6: I can recognize the emotions they feel, but not the reasons behind them. To comfort, I try to do what would be considered appropriate for the situation. Funerals of loved ones = lets chat about them. If they can’t, then just be there and listen. Listening is one of the most comforting supports I’ve found
Q7: I really wish I could – it’s just horrible. It’s like they invented those application databases to weed me out. They’re so tempting (though tedious and redundant).
Q8: Yes – much more sensitive to sound. I can actually feel planes flying overhead before I can hear them, which can make it difficult to sleep sometimes.
Q9: Yes! But I always return refreshed and ready for more
Q10: Currently take it to help with sensory overload – no noticeable side effects, but I’m generally very tolerant of stimulants. (I have anywhere from 100-600 mgs of caffeine a day, but with little noticeable effect)
anonymous answers:
Q1: I was diagnosed with Asperger’s syndrome and I do not like to travel, it does get worse with age, I have more anxiety and depression, and those things get worse if I travel.
Q2: I don’t know, I am not interested in travel.
Q3: I have problems with anxiety and with the smell and sounds of the plane, I get dizzy with those things.
Q4: I cry and I can not help it.
Q5: No, I don’t find myself getting more autistic as I get older, I would say that as I get older I have become more aware of my difficulties, I have more anxiety because problems in adulthood are more complex than when I was younger, I have more responsibilities and sometimes I do not know how to handle it, I never had coping strategies that were effective for me, I have to find coping strategies urgently. I know that with the help of a psychologist I can do it but that’s expensive. I have not enough money to go to a psychologist.
Q6: I cry when I have strong negative emotions. I don’t know how to support someone, if I see someone crying all I can do is listen to them and be there for them, I wish I knew how to help them more.
Q7: I do motivate myself reminding myself that I need to have a job to be independent and survive in this world also to help my family.
Q8: I get more depressed during those days and I cry easily for everything.
Q9: Yes, I do sometimes.
Q10: No, In my case I don’t take drugs to help ADHD, I was not diagnosed with ADHD, but I have taken antipsychotics and antidepressants for depression, my psychiatrist had to remove the antipsychotics because I got very dizzy also he had to remove the antidepressants because I started having dry lips and my lips began to break and bleed. That was horrible.
anonymous answers:
Q1: I don’t have a problem with travel but that may be because I bring a lot of home with me (pillow, blanket, electronics)
Q3: I don’t have problems anymore but that’s due to planing and the fact that I’ve been able to bring my “escape hatch” with me as I use electronic media (games, music, etc.) My main problems come when I can’t lose myself in them such as transferring planes. My issues are kind of chicken/egg, too much going on around me leads to overload which then leads to anxiety and in extremes panic attacks but I usually figure something out to calm down before then like headphones so my music is blocking out most of it and calming me down (multitaskers are great).Long flights equal a lot of immersive electronic entertainment (movies, gaming, etc.) Which combined with headphones makes my own control able “bubble”.
Q4: If I’m honest usually I withdraw and freak out whether in my own head or outward meltdown. It’s better if I have someone with me my friends/family usually will give me a couple minutes somehow to get it back under control.
Q5: Yes I have noticed a worsening but maybe I just notice it more (being identified as on the spectrum is new for me) but my ability to cope has gotten better in the fact that I don’t try to force myself to do what NT’s can I take time if I need to now. But I also notice more that I need to so maybe I’m getting worse, I’m not 100% sure on that.
Q7: Honestly….. money. I’m on disability and generally get a job when I get fed up with having no money.
Q9: I don’t usually a person close to me will point it out or it will fizzle on its own.
anonymous answers:
Q1: Depends what kind of traveling we’re talking about. I prefer to stay home and not travel around town on a daily basis but I love traveling to other places. I grew up travelling because of my father’s career which took us to Australia, England and Canada then back to the states before I turned ten. I loved travelling and still do, but I haven’t been able to afford much of it.
Q2: Most people who know me can see I’m not NT, so I don’t pass. In my case, the oposite of your question may hold — when I’m out of country people just take me for a goofy American.
Q3: I do detest long flights, but my biggest problem is landing and waiting for people to gather things while I’m usually crowded in and feeling claustrophobic. I’ve taken to sitting as close to the front as possible so I can deplane asap.
Q4: First thing I have to do is recognize that I may be panicking — this isn’t easy, but when I do realize it, I first breathe. Then I think of the worst thing that could happen to me, which is always my death or a loved one’s, then I back away from there regarding the situation. Most of the time, this helps calm my stuck in fight or flight response mode.
Q5: I was unable to get diagnosed until two years ago in my mid-fifties. I was surely relieved to finally make a connection to peoples’ response to me and my way of seeing the world. I don’t know if I’ve gotten more autistic. Rather I’ve become aware that it’s okay to perseverate, stim, or do other autie things. So, to the world, i may seem more autistic because I’m not trying so hard to fit in anymore. This defintely connects to age, as getting older has caused me to embrace my own way of doing things over what the world wants me to do.
Q6: I’m not clinically alexithemic, but I do have a hard time knowing how I feel at any given moment. I’m often too busy trying to figure out why someone else seems upset or angry or who knows. If someone is super upset emotionally, I may not figure it out right away, but if I do, I will try to take them aside and just listen. I only hug them if I feel I have to. As for me, I’m often just irritated due to outside stimuli, and it takes a lot for me to actually get angry. When I do get angry, I raise my voice and tend to get defensive. I can’t maintain a loud argument very long because I’m not good at thinking of what to say when I’m in such an emotional place. The other thing I do is tell people straight out, like, “That makes me mad.” As for sadness, I cry during movies all the time, but just a little, not weeping. It’s hard to tell when I’m actually sad without some sort of overt signal like a film.
Q7: I’ve worked since I was 15. I’ve always worked, and I think the motivatin is that if I don’t work, I don’t have money to live. Job hunting has always been hard, and it takes a lot to fortify myself againts the rampant sexism, disablism, etc i encounter, but I developed an attitude about ten yerars ago: if a place doesn’t want to hire me, that must not be a very good place for me. Sometimes this extends to the people involved — they are not good people to be around.
Q8: I always became much more clumsy during my period. I got much more irritable. I was able to feel my eggs travel, and I was very much more sensitive to other people’s vibes. Without me knowing it, I kind of catch people’s vibes like a little flu, and their mood can easily affect mine. This is where most of my confusion about social interaction happens because NTs are often saying things that don’t match the vibe their sending. It’s hard to explain without making it sound wackadoo, but that’s my experience.
Q9: Yes and no. It took me long time to figure out that one of if not my main special interest is researching. I love finding things out. So while I don’t take time out from being curious, I may change research foci. This can be bad because I can lose track, forgetting why I started looking into point X in teh first place..
Q10: Never took those. Having been misdiagnosed and undiagnosed most of my life, I was given Paxil by a very erroneous GP once. Had horrific response to it. My belief is that meds in general are not necessarily the best thing for autistics with no co-morbid conditions. Our brains are already precious, and mixing our brains’ natural chemicals with foreign ones is not the best idea.
anonymous answers:
Q1: Not a huge problem for me, but I’m always traveling with loved ones. That said, I hate every bed other than my own, and it’s always the wrong temperature at night in other places.
Q2: Everyone I was traveling with was out of their element, so it was easier.
Q3: Sensory overload is a problem, and I cramp on any flight no matter how long. I try to get up and move as much as possible, stay plugged in to my listening devices (not interact with others), and sleep when I can’t move.
Q4: Badly. Heh. I try to shut down and stay close to my loved ones, or I end up making a scene. I hate that.
Q5: Yes and no. I’m more self aware now, but the stress I had at work steadily increased to toxic levels over the past few years. It’s still better than my childhood, because I have control over when & where I engage people and activities much more than in my growing years.
Q6: Wow. I confront emotion head-on with logic and careful analysis. It is a tool, not my master. I have a hard time being sympathetic with those who let their emotions run away with them or make bad decisions based on their emotions. I greatly sympathize with those who are going through tough times, but am often at a loss as to what to say other than, “I’m so sorry this is happening.” I offer what light I can see is at the end of the tunnel, and since I’m a Christian, I pray. I recognize feelings by listening, looking at body language.
Q7: Haven’t had to do that in years. I had bills to pay, and that’s a huge duty in my head, so that was a motivator. I worked the same job for 18 years until this Feb., at which point I asked for a sabbatical and was fired. My husband has paid most of the bills and continues to do so. Since I homeschool our children, he doesn’t expect me to go on the hunt anytime soon.
Q8: I have PMDD. I can sense the hormone drop before my period starts because I will suddenly have a great onset of panic attacks and not be able to cope with normal daily stress. I’ll lose sense of direction, coordination, and memory. My proprioception goes out the window, and I’m very sensitive to cold, drafts, scratchy clothing. I struggle even more with understanding my hunger and thirst senses.
Q9: Yes.
Q10: I have not taken any drugs for this, nor plan to.
anonymous answers:
Q1: I’m 16 and I get very stressed before going anywhere and while I’m traveling there. When I’m actually there it usually takes me a few days to settle in and even once I’ve done that things still feel ‘off’.
Q2: I don’t know – I’ve never had to pass as NT at home and I have an autistic sibling too so travel is an issue anyway.
Q3: Airports are stressful for me, especially if it’s an airport I’ve never been to before. I can’t use public toilets so I can’t use the toilet from the moment I enter the airport to the time when I’m in wherever I’m staying and able to use a private bathroom. Airports are loud and in airports and on planes there are often a lot of bad smells which I find it hard not to pull faces at. If I ever had to sit next to a stranger that would probably be a big problem, too, but my parents always make sure I’m sitting next to people I like and know. The feeling of the seatbelt isn’t one I’m used to so I end up pulling at it and taking off always makes me scared, and when the plane lands my ears pop and that upsets me.
Q4: Panic more lol
If there’s a corner I can go into I’ll sit down there and pull my hoodie around myself. If there’s a bathroom I can go in there but I can’t touch anything except the floor with my feet so not ideal.
Q5: When I was at school I stopped stimming and things and I was a lot more stressed then, my brain stuff got worse. I left school at 15 and began stimming and not trying to pass as NT again and I feel a lot calmer and happier with myself and the fact that I’m autistic. I went to see a therapist for a bit after being formally diagnosed but after a few sessions me and my mum decided it wasn’t for us and I stopped seeing the therapist.
Q7: I.. don’t, quite simply.
Q8: I don’t know if this counts but I’m really sensitive to smell so periods are a problem for me with that, it makes it hard for me to focus and take proper breaths.
Q9:I flit from interest to interest quickly, I usually obsess over something for a few months before dropping it completely and moving on to the next thing. I very rarely keep things as a special interest for long enough to need a break from it.
anonymous answers:
Q1: Yes, I have that problem. It has gotten worse with age. I’m now 62.
Q2: Yes it is.
Q3: I can’t deal with panic attacks on any airplane, so i haven’t flown since 2001.
Q4: Not well at all.
Q5: Less autistic as coping skills have improved with age. But i’m less brave and daring.
Q6: I try to avoid strong emotions
Q7:I have had the same job (which I love) for 34 years.
ooops! better do these before the next one comes out!
1. Is travelling is hard for all Aspies as they age? I love travelling and have travelled a lot,sometimes quite rough/backpacking kind of travel on my own. I think I actually prefer travelling alone as I don’t have to accommodate other people’s wants/needs and can suit myself. Many of my regular holiday companions have aspie tendencies and this can get stressful if your sensory issues and requirements don’t match!! Travel and travel planning is one of my SI, so I guess meticulous planning is the main way I cope.
2. Is liking or disliking foreign travel related to ability to pass for NT at home? I find something liberating about foreign travel, especially to places like China where a western woman travelling alone is already so weird that no one expects any particular sort of behaviour from you.
3. Do you experience problems with long flights? I think on long journeys I go into a sort of voluntary shut down/trance, where I can stay very still and hardly move for long periods of time, but also don’t think too much about any fears or sensory issues in this state. I do this on long bus journeys too, and at the dentist. I can also read for long periods of time, and this makes time pass quickly.
4. How do you cope with panic attacks? Don’t have regular panic attack thank goodness, but I have had a few. If I can’t ask for help I probably I just shut down as above.
5. Do you find yourself getting more autistic as you get older? Hee, hee – feeling quite autistic at the moment as I am only just diagnosing myself – so I keep noticing stuff and thinking – Aha! But not sure this is actually the case. Also – laughing at Rudi Simone’s comment on her proposed female aspie trait of being too obviously awkward if you like someone romantically – she says ‘this will change with maturity’ – nearly 50 and still waiting…
6. How do you cope with strong emotions, and others emotions. Not always good at understanding my own emotions, or allowing myself to acknowledge that I feel things. Not bad with others emotions, as long as they are not loudly and aggressively directed at me – I am a good listener for many of my friends.
7. How do you motivate yourself to job hunt? Break it down into tasks, which on their own are less intimidating. eg. just looking at the internet and making a shortlist of jobs, or just updating my CV but not sending it. At least this way I can identify the bit where I am getting ‘stuck’. I hate interviews though, unless they give me a specific presentation task, as I hate answering the ‘describe a situation where you overcame a difficulty’ type questions. Google earth is good for checking out interview locations in advance so you can mentally ‘rehearse’ . Before this I used to like to go to the place beforehand to check out where I was going so I didn’t get flustered.
8. Do you notice changes during your menstrual cycle. No longer the case as pre-menopausal and have Mirena IUD, but suffered very bad PMS, migraines (which came with their own sensory issues – smell and sound sensitivity), clumsiness, much more likely to meltdown/lose temper.
9. Short break from SI – sometimes I do feel exhausted by SI or other obsessions and wish I could stop – sometimes can sometimes can’t!
10. ADHD drugs – Not got ADHD or taken these, but generally affected strongly by all prescribed (or other) drugs. Have had problems with strong pain killers and anti-malarials giving me hallucinations and depression in the past, and with addiction to painkillers (within days of taking them).
anonymous answers:
Q1: Not for me, no. I’m actually a big traveling fan. It’s difficult sometimes, but not intolerable. Sometimes I think it’s actually easier because, when we’re not traveling, my family’s really unscheduled, random and inconsistant. They only stick to a schedule when they have to, which is often while traveling. This is really relieving and relaxing because it allows me to “go with the flow” without having to ask them all the time to make a plan and then actually tell me what the plan is.
Q2: I don’t dislike traveling and I’m not really trying to pass anymore at home. I’m actually trying to get them to accept my autism, though there are a few autistic behaviors like weird stims and passtimes no one ever sees.
Q3: I’m not sure. I haven’t been flying in a few years. I don’t think anything was particularly problematic. I remember nearly crying because they didn’t have anything nut free (allergies) and the crackers were horrible lol. But that wasn’t a huge deal I don’t think. I was probably perfectly content just to look out the window and think without anyone bothering me.
Q4: I sit down (preferably in a corner seat) and hope nobody talks to me.
Q5: They come and go. Usually, after a shutdown there’s some frustration with getting my words out and sensory difficulties. This only really happens if somebody pushes my energy resources too far. I’m currently thinking about allowing myself not to talk when I get close to this point so when I get frustrated and do need to talk, I have the energy. I’m not sure how my friends and family will react to me purposely taking a break from talking or what other communication methods I can use (probably writing or an app), but I’m definitely thinking about it.
Q6: I cope with strong emotions by being alone. I’ll shut everything down with people to cope. I’m still figuring out how to express them. I’ve thought about this a lot and I think they’re just overwhelming to me on top of all the other overwhelming. I don’t deal with strong emotions until they “come down” a lot too. In person, I’m still figuring out how to comfort people. Sometimes I just stand there. The emotional weight is too heavy to stay, but the rudeness and insensitivity I’ll be communicating if I leave just about kills me. However, if I’m writing, I’m pretty much in counselor mode and seem to deal with some slight awkwardness, but nothing major. Usually I have a mix of empathy and a logical standpoint. I figure out the feelings logically though too. I started making an extensive inner database of the ways people express emotions and socialize from when I was in kindergarten, so while I’m still not as good as a lot of neurotypicals at this, I’m still pretty good. Sometimes it takes me a while to sort the list of possible emotions, but I do get there. Psychology is my special interest purely for the reason that neurotypicals are so confusing.
Q7: I’m still 16 and I’m still motivating myself to finish high school with all the mess that is. I’m sure you’ve heard enough about aspies and school not mixing to imagine.
Q8: Yes. My pms can be as bad as the actual period, so for 1 1/2-2 weeks I can experience what I call sensory pickiness. Basically it’s saying, “if I cope with this tiny, easily changed thing now, I might not be able to cope with big things later so I’m gonna conserve my energy an be really picky. ” Even with that, little things ca and will send me into a shutdown or meltdown.
Q9: No. My family thinks I do haha, but I can usually pursue a special interest without going to the point when it’s unhealthy.
Q10: No.
anonymous answers:
Q1: It depends on where I’m traveling and how I’m getting there. I enjoy flying, but have a hard time with long car trips, especially if I’m the one driving. I enjoy being away on vacation with my husband in a hotel or camping, but I don’t like being a houseguest for more than a few days. As long as I have my own space to come and go as I please, I don’t mind being away from home.
Q2: I haven’t had too much experience with foreign travel, and it was all before I suspected I was autistic.
Q3: I haven’t been on a long flight since I was in high school, but I didn’t have any problems, other than some issues with the food, because I didn’t know what prosciutto was at the time and I’m a vegetarian. I’ve flown a fair bit with shorter flights, though, and I really like it. I love looking out the window and seeing things from a different perspective.
Q4: I honestly don’t have a great coping mechanism. Going to the restroom helps, because I can shut out the world for a few minutes, but this isn’t always possible. Sometimes I just shut down. I’ll stay on the periphery of the situation, and just stop talking or doing anything until the panic passes.
Q5: Not sure how to answer this, as I’ve only known for a few months.
Q6: To cope with strong emotions, I do things. For example, if I’m angry or upset, I might go scrub the shower, or do dishes. I don’t know why this works, but it does. For supporting people going through a difficult time, it’s really just trial and error with me. I learn through practice what helps people I’m close to, so even if I don’t get why it helps, I know that it does, so I can do those things. For example, my husband is very tactile, so I know that if he is upset about something, and I can’t do anything practical, touching his arm, or giving him a neck rub, or hugging him seems to help.
Q7: I am currently collecting unemployment, so my motivation is very practical. In order to continue to receive payments, I must apply to a certain number of jobs per week.
Q8: I have not noticed any changes. I menstruate irregularly, so it’s hard to ascribe anything to that.
Q9: Yes. I tend to get very obsessed with something for a while, and then take a break. Sometimes I return to that interest, while other times, I will find a new interest to obsess about.
anonymous answers:
Q1: I travel a lot. My job requires me to move to another town every two years. Its difficult because I feel I no longer have anywhere I can call home. People ask me, where are you from? I never know what to answer.
Q2: I enjoy being in foreign countries. My Aspie traits are simply brushed aside by locals as a difference in culture. Its one of the few times I ever feel accepted for who I am.
Q3: I don’t like sitting next to strangers, especially ones who try to have conversations. I only have issues with flights when they are delayed or cancelled. Then I don’t cope so well. For the rest of the tie, I have a routine for flying which involves plugging into my tablet or DS and ignoring the rest of the passengers.
Q4: Fortunately, I have not yet experienced this. I do carry an Alert Card should it happen.
Q5: Yes. Greater responsibility means my previous coping strategies do not work as well any more. Also, my sensitivity seems to be worse as well.
Q6: I don’t. I tend to just separate myself from it in case I say or do the wrong thing and cause more harm.
Q8: Before diagnosis, I used to think meltdowns were due to menstruation, but once I started making notes of when they occurred and why, I realized there was no pattern or connection. So , no.
Q9: Sometimes.
Q10: No.
anonymous answers:
Q1: In my 40s. I just couldn’t travel until my late 30s. If I know I have a safe place at the end, I can do it.
Q2: I moved to Prague for 3 years to prove I was normal. Not sure it worked.
Q3: I wear headphones on planes and plan exactly what I will be doing at all points on the plane and at the airport.
Q4: I shutdown.
Q6: Avoidance.
Q7: Self employment.
Q9: Yes.
1. I am wondering if travelling is hard for all Aspies as they age or if it is just me? I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here
I find I’m ok if I have some familiar things with me, and a space I can go to to relax. I don’t travel much but do enjoy it. Although before I get there I find the preparation very stressful and if I can’t imagine what it will be like I feel like I don’t want to go, although I know I do really and make myself.
2. Is liking or disliking foreign travel related to ability to pass for NT at home?
I like that abroad I am a foreigner so it doesn’t matter so much about fitting in, as long as I am polite of course.
3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)
I haven’t been on very long flights, but loved the short ones I have done within Europe. I just love looking at the clouds and down at the ground and spend the flight glued to a window. I haven’t had to navigate an airport without help.
4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?
Don’t get panic attacks.
5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?
I’m not sure because I’m definitely more aware of my difficulties now than when I was younger. I have better coping strategies, and also more acceptance of things so sometimes don’t try so hard. I think somethings may be worse, but I also care less too. I don’t really know. Decrease in energy definitely causes increase in dis-ability and decrease in coping skills.
6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?
I find it difficult to identify emotions in myself and others, and am easily overwhelmed by strong emotions. Its like there’s just on or off, no in between. I find the best thing when others are involved is to talk. Ask whats going on with them, and explain that you aren’t uncaring if you can’t guess.
7. How do you motivate yourself to job hunt? more details here
I haven’t had to very often but always been lucky when I do. I’ve never had a “proper” job or a carer or a long lasting job.
8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.
Reduced coping skills, but helped by the pill. Abdominal pain is very distracting for me, some types of pain don’t bother me but this area does.
9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?
Maybe should, but don’t tend to do this deliberately.
10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?
Took concerta for a couple of years. It worked as it was meant to – increased concentration, less fidgety, easier to relax, better communication skills (because of better focus), increased cognitive flexibility, increased working memory capacity. I needed quite a high dose to achieve this.
When I started taking it I would feel very sleepy after each tablet. As the doses increased I’d be like a zombie for a couple of days then recover. I had the worst bout of chronic fatigue syndrome I’ve ever had while taking it, and when I stopped taking it I started to recover. There was a marked improvement with each decrease in dose, and when I stopped all together. The CFS hasn’t gone, but I’m sure the concerta was contributing to it.
Another side effect was to make people much “closer” and much more annoying because I was more aware of them all the time. I wanted to be able to keep up with social situations before taking it, but I think its overated knowing whats going on. There are people I was happy being friends with pre-concerta who I couldn’t tolerate easily during, and can’t forget how that was now I no-longer take it.
anonymous answers:
Q1: Has getting worse with age for me.
Q3: I my case flying, navigating airports, unfamiliar surroundings. Sensory overload and anxiety is big.
Coping strategies : Medication.
Q4: I cry and take medication .
Q5: Psychological assistance has make a big difference overall, this is even before I knew I had ASD. I was only diagnosed 3 month ago, in my late 40’s . Now that I know is autism, I think I getting more autistic in the last 8 years.
Q7: I have a full time job for the last 20 years.
Q8: Irritability, sadness, migraines.
Q9: Sometimes, depends on the interest, like reading non stop about ASD.
Q10: No
anonymous answers:
Q1: I get drained very easily and more than usual. My hearing goes hyper hyper-sensitive and every little noise bothers me. I only like to travel with my partner as he is a grounding source for me.
Q2: Not sure
Q3: Never flown but I know it would be horrible! Which is why I have not flown!
Q4: Shut down completely. I can’t even focus on listening to what people are saying let alone acting like a care enough to throw in a nod or facila expression. I just completely turn off.
Q5: Depends on the day and the situation. Some days I feel totally fine. Others I am totally not.
Q6: I shut down or I melt down. I do a lot of ricking and hand flapping. I feel really bad when other people tell me they feel bad because of XYZ or if I see someone crying I feel really bad but don’t know what to do.
Q7: My partner. and anxiety.
Q8: I find I have less control my traits and behaviors
Q9: No
Q10: Nope
anonymous answers:
Q1: I love to travel, but especially as a way to be on my own & away from life. Travel with other people is not a favourite & I can’t wait to get home.
Q2: No
Q3: Yes, can never sleep on a plane, hate interacting with others. I just watch films with headphones on all the time. I can fully plan ahead with the ease of info on the web, so I do not find it stressful
Q4: I have always been able to leave
Q5: Yes, it is easier for me to isolate myself which in turn leaves me forgetting what I have learnt or observed about being NT. Also, too exhausting now to not just be myself.
Q6: Isolation. I just listen to them, want to offer suggestions & help but have been shouted at for doing that in the past. I wait for people to tell me what they feel or I just get it wrong if I guess myself
Q7: Need help with this myself
Q8: No
Q9: Yes, I have to go cold turkey sometimes or it takes over my life
Q10: No, have terrible problems sleeping so would never touch them
anonymous answers:
Q1: For me, it’s gotten worse with age.
I’m 32 and wish I could go see a friend or a relative in another town, but I would have to spend the night, so I can’t.
I used to travel for conferances with the LGBT-youth organization I was in, no problem at all.
Q3: Five years ago, I flew from my home in Göteborg, Sweden, to my then-partner in Atlanta, Georgia, USA.
I impressed myself being extremely calm the whole trip.
The very first thing I did when I got to the airport was to walk up to the Informations-desk and ask where to go. It felt like that ice was broken, metaphorically, and the rest of the trip I would just ask Information any time I didn’t know where to go.
Q4: Breathe.
Q5: I find myself less rigid. I don’t have to do things I had to do when I was younger. I “day-dream” extremely less now.
On the other hand, I’m less sociable and get more tired when I’ve been in a social situation.
Q7: I’ve been on welfare or on disability my whole life.
Recently, I’ve been wanting to try to get a job with a company specifically hiring people with disabilities (empolyees get more assistance when learning the job).
I want to do this because my doctor prescribed an expensive medication.
Q8: I notice nothing like that.
Q9: Yes.
anonymous answers:
Q1: I have always had issues being out of my home environment but I theorize this is less due to travel and more sensory conrol. At home i have a lot more conrol over the sensory input in he building. The lighting, the sounds. This makes it less energy consuming to be home than out.
Q2: No.
Q3: I medically cannot fly but the airport itself was the worst part when I could. Boarding, the searching, the violation of your physical being because you might be a terrorist etc.
Q4: I sing. Even if its very quietly I force myself to breathe by singing and focus on the harmonic resonance of the notes.
Q5: I am the same amount of autistic, I just have fewer spoons to pass for normal and do the oher things peopple expect me to do to hide my autism. I am better at coping and yes i do use psychological assistance, what I called it before this survey for things like scripting and stuff but my deterioration is also related to physical ailments tha are not autism relatd.
Q6: I feel them, I do not lable them and I just let myself feel what I feel. I quit trying to name, judge and define my emotions they just are. No feeling is good or bad they are simply feelings. I am alexithymic and not naming them is less stressful.
For emotionally supporting others, I listen. I make sure they know they are not alone and I just listen. The last one depends on the person but usually just listening and reminding them its okay to feel helps. Sharing my own method of just feeling seems to be freeing to a lot of people regardless of autism.
Q8: Yes, I have a lot of sensory shifts before and during my menses.
Q9: This varies, some things I do need a break from others I am fine to persist on uninterrupted for a life time. Batman has been a perrsistent obsession since i was four and I am now abou to turn thirty where as Game of Thrones i can go for three week bursts on.
Q10: Ritalin made me psychotic and hemmoragh everywhere. I also had a lot of sensory badness I do not know how to word with the drugs. My ADHD is treated via coffee and meditation. Which sounds odd but it took a long time to get to the meditation part.
anonymous answers:
Q1: I HATE driving no matter what. I HATE flying I like to be on solid ground. I can go on a trip, but I have pets that I worry about and would rather stay home with them even if it means I have to stay home alone. I enjoy the freedom and peace and quiet of being left home alone for long periods of time. If the place we go to is clean and nice I don’t mind staying for extended periods.
Q2: Not really, I don’t give a damn about passing for a NT. I get the sam reactions most places. EXCEPT if I go on a trip and have to eat a an unknown restaurant then I get panicky because I don’t want to get us thrown out of one of the only places we have found to eat at.
Q3: FLYING is the worst part. I could care less about planning, navigating airports (I’m not that bad at it, so it doesn’t bother me as much), the lack of familiarity can be somewhat daunting, but flying is what I loathe. I am a ground dweller.
Q4: Terribly if I can’t cope I might start with my unhealthy coping behaviors. If it gets bad enough I might cry or have an asthma attack.
Q5: I wasn’t diagnosed until high school. I’m not very old now, so I haven’t had much time to see how much more my Aspergers has taken hold. I’m finally on the right medication now and I’ve learned to cop through professional help. I can talk to people I would have never been able to speak to before now.
Q6: I have issues expressing my feelings in a concrete way. If you asked me I couldn’t tell you how I feel about things. I know what I don’t like and not so much what I do like. I have unhealthy coping mechanisms that have given me scars in the past. I often just implode rather then dealing with it or hurting other people. I direct my negativity towards myself a lot sadly.
Q8: I get really emotional. I am a million times more likely to cry during that time (I usually don’t cry otherwise). I have issues coping with my feelings even more so then usual.
Q9: I cycle through different things I am heavily obsessed with. I guess it is my own sort of break.
Q10: I’m pretty sure I took it as a child and had to switch to something else because it worked horribly!
Q: Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?
A: I was diagnosed with ADD, and used ritalin and concerta. I had really nasty side effects (some of them can be because I also have IBS):
-extream Nausea with some really unplesent choking from time to time
– My appetite was lost for almost the whole day, even if I took the minimal dose of ritalin at 8 am (I used to take only 10mg).
And – they almost didn’t help at all! It was still extreamly hard to concantrate, and only if I drank some strong tea (it creates synergistic effect with the ritalin, without making the sideffects worse. It is not recomended, but it was better then nothing). It only helped me stay awake on lectures (concerta didn’t do even that. I fell a sleep during a lecture!).
I can even sleep on ritalin, sometimes. Also, sometimes it didn’t work at all.
After my diagnosis, I started a tretment in the universities psycology clinic. My psycologist sent me to the psiciatrist and he gave me Viepax for my depression. It was great, because it also helped me to concentrate much much better (it is known to also help add sympthomes, as the psychiatrist explained), and because of my IBS, the dose was increased really slowly. It was tge first time in my life thst I had a medication “tailored” for me, and it was amazing.
I used ritalin only once since I’ve stareted the tretment.