Congratulations to the 5 winners of Ultraviolet Voices – Stories of Women on the Autism Spectrum :
- Otterknot
- Lana
- Nicole G.
- Mama4science
- Tagaught
I sent off emails to the winners, so be sure to check your inbox and get back to me with your mailing address if your name is on the list above.
Survey!
There was enough interest in doing another round of surveys so let’s go for it. The last time we did surveys, I had a lot fewer readers and we still ended up with 5 weeks worth of survey questions so I have no idea how manageable this will be, but we’ll give it a try.
The Concept
Do you have a question you’ve always wanted to ask other autistic people? This is your chance. Some of the questions in the last survey had over a hundred people answer them and often the answers went into a lot of detail. For an idea of questions that were asked and answered last time around, take a look at this post and the posts linked from it.
How it works:
1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but if there are too many questions, I may have to limit the number of questions per person that get used.
2. I’ll collect the questions and organize them by theme.
3. I’ll post the first survey on a Tuesday (tradition!) and then post a new survey once a week until we run out of questions or we get tired of talking about ourselves. 🙂
Musings of an Aspie 
Does anyone else besides me group letters on things like signs and license plates until they can get an even number?
Reminds me of David Beckham, who according to Victoria, cannot stand an uneven number of cans in a fridge and has to take out one if it s an uneven number (I think both Beckhams are on the spectrum.)
I’m just going to copy my question from a few posts ago:)
I am wondering if travelling is hard for all Aspies as they age or if it is just me? In my teens I was pretty resilient…I didn’t love travel but it was ok and most times I did not end up sick from sensory overload and exhaustion and change, in my twenties I was ok too but did most of it at great cost to myself with needed time to recover from my “vacation.” and now in my thirties I am finding that day trips are the only thing I can handle. 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?
My therapist assures me that it is just fine and beautiful to live my life my way…that we were not meant to travel as much as our culture promotes anyway and that I am intellectual enough to experience the growth of another culture through books, people and my great empathy and understanding…so I feel less guilty about it but I am curious of how much of it is personality or autism?
I am in my late 30s and feel the same as you, it’s harder the older I get.
Oh, hell yes! I have travel anxiety, even it it’s going to a friend’s for an overnight stay. Going out of state can take weeks to prepare for. I’d love to go to England, but the thought of going to another country, even though my immediate family is from England and I am an Anglo-American, is completely daunting. I like traveling by car or train, since I can deal with the gradual changes in the environment (though I don’t do well in train stations/airports). Planes make me feel completely displaced. I can handle about two weeks away from home and then I HAVE to get back, even driving for 20 hours straight if I need to.
I would like to know how goodbyes and partings are for people, and where “lost” significant others (not necessarily romantic) fit into one’s memories.
As context, I had to say goodbye to a little boy I was working with, when an internship came to an end, who was one of two kids there I felt an extra-strong connection to. Mostly our “work” involved enjoying each other’s company and my looking for comfortable ways to help him develop conversational skills. According to his teacher and mother, what had been a rough year for him when we started meeting, transformed; it feels immodest or credit-claiming to mention that, but I do think our time was valuable for him, and it certainly was valuable for me. I let him know I would be leaving several months in advance, and then reminded him often enough for us to be prepared, but not so often that I was making it a heavy fact weighing on our time, although we of course had to talk about it more, the closer it got. We made a memory book full of pictures from throughout the year, with captions of his choosing, and did lots of celebratory things, like inviting his mom and teacher to our next-to-last visit, so everyone could acknowledge his progress in school and we could share our book with them, and then inviting his best friend for a kind of Lego play-date in the guidance office with me. I gave him a four-color pen, which he had once said was his favorite kind, and a super-smooth stone that fits nicely in the hand, and he seemed to like those things. I had designed a worksheet a few weeks prior, where we could each indicate how we feel about goodbyes and then talk it over, and among other things, he let me know that he felt worried and that he thought other people needed to be aware of that. (In fact, he had started to get into trouble in his classroom as the end approached, which hadn’t really happened since early in our time together; but talking about how that might be connected to the worry, and sharing that with his teacher and mom, seemed to help.) He let me know many times, over the months, in the most charming ways imaginable, that he felt attached to me, and I certainly felt attached to him. All of this to say that parting was hard, although I tried to make it a positive experience, including in his book a long letter about how great I think he is and reminiscing about the year. I have his mom’s contact information, and she wanted us to stay in touch, but the parameters of the internship (and profession as a whole) are such that we’re not meant to maintain ties, but rather to conduct our work with client empowerment in mind and then conclude it. Which I can accept, even when it’s hard, from the perspective of its being the best thing for the kids – it’s about them, not about me. But the ideal is for kids to leave *you* when they’re ready, a kind of “graduation” – or at least at the natural end of the school year, whereas his school year continued six weeks beyond my internship. I saw his teacher a short time later, and she said that he was bringing his memory book to school and spending time looking at it. I guess, setting aside the fact that I expect I’ll continue to miss him and sometimes tear up when I look at his cards and drawings, I’m hoping that our time together will prove to be a positive foundation for future relationships, not an unhappy precedent or expectation that “people who matter to you will just leave you at some point.” I’m a little worried that if got or gets sad, he might misconstrue things or recast his memories, differently than non-autistic kids. He hadn’t been diagnosed, by the way, and consensus at school seemed to be that his mom was resisting it.
Okay, thank you, I just needed to let that out.
Typo: I’m a little worried that if *he* got or gets sad…
I honestly would re-contact him and keep in touch, as both of you seem to feel like it. That is just the normal thing to happen,if you sense that he might still need you, and that is what you clearly do.
Hoopla!
As far as the survey, I’m wondering if sitting all crossed-up in chairs is an ASD ‘thing.’ Throughout my life, I’ve sat in chairs cross-legged or with one knee drawn up (with that leg’s foot flat on the chair and the front of my leg usually pushing against the table in front of me). I rarely sit with my feet flat on the floor. It feels unnatural to do so. Now, I also have severe (partially corrected) scoliosis, so I think part of my sitting is trying to accommodate my own spine. This is a pretty basic question, so it’s possible it’s already been asked.
Me too!!! I can NOT sit with my feet on the floor…
The only way I can do it is if I sit on an exercise ball, which I do at work these days. And I still get twitchy.
I don’t have scoliosis and I do this too, have all my life. At work I tuck one leg underneath me.
I wonder if the pressure of that is kind of like a stim? It’s not something I’ve ever thought of that way. What got me thinking about it was back when I was at a super low point emotionally, I realized I was turning one foot a bit on the edge or curling my toes under if I didn’t watch myself, while walking–not something I usually do. I started to wonder if ‘tucking up’ or ‘in’ physically in different ways was a coping thing.
That’s an interesting consideration Otterknot. First thing in the morning while brushing my teeth, or when often when standing at the sink in the kitchen I’ll find myself standing on the outside edges of my feet. I don’t think I have ever stood completely flat footed, though I don’t think I’ve been a toe stander. I remember being in school training as a massage therapist and one of the teachers commented on how I did not stand flat on my feet.
I do this as well, tucking a leg underneath me. I’ve done it all my life, and I’m in my mid-50s. I think I remember reading that it is like a stim – a way to self-sooth/regulate.
Fascinating – I do it too (even put it in one of my latest blog posts) and had started to consider it a way to suppress a stim I might have had as a child, not a stim itself. Need to mull that over a bit.
I was amused to notice that I was sat on top of my foot while bouncing on my gym ball (part of my sensory diet routine, although not the foot part!) while I read this thread 🙂
I’m pretty sure it’s both proprioceptive and pressure stimming, so not that surprising that lots of us do it.
Yep, the bottom of my legs get restless and agitated just hanging there gangly and loose without the pressure of at least sitting with them crossed, not necessarily always criss-cross-applesausce, or as they said in elementary school 🙂 however, they are never straight down and just “sitting”. I also sit with my hands flat under my legs or balled into a fist between them, I think the tingle and pressure feels nice on my hands. I suppose this is a form of stimming, who knew? I thought everyone enjoyed sitting that way — a quick glance around a waiting room and you realize otherwise……..
Oh wow me too & I never thought about it this way!!! I feel very vulnerable sitting with my feet flat on the floor. Perhaps it’s a female thing? All people at my aspie group are men and none of then sit like that…?
I do it, too, and I am neuroypical. It is bad for the muscle system, if you sit always in one position, and think that in our culture we do not bend our legs and feet enough, and that s why most of us are so terribly stiff, compared to Asian or African people. If the setting is more formal, I automatically sit in a conventional position.
With my little son (neurotypical), I quite often saw that he was first looking very attentively at my or his father s posture, and then imitated it. If your parents have a very limited range of movements and if in addition, you always hear “sit straight”, “put your feet down”, you will very likely end up like them (unless they bother you so much that you do exactly the opposite).
Many aspies care less about conventions, and all imitate less, and might also therefore take more unusual postures. Then taking up one s leg could also be interpreted as a defense posture, a bit like crossing one s arms.
Quite funny that people on the spectrum often dont come up with a social or cultural reason for differences, while I would always think of those first, and have trouble in seeing any other explanation. (That with the defense posture came last into my mind).
Hi, Eva – I tend to find it interesting, and sometimes relaxing, when the occasional “NT” contributes to this conversation. That being said, some of your comments feel fairly sweeping to me, and though I believe commonalities are important, it also concerns me to see diversity overlooked within any group or population. One sentence that stood out particularly was your remark that “all [Aspies] imitate less.” It may be a case where terms need explicit definition in order not to create confusion (people may mean different things by “imitate less”), but it seems problematic to use that word “all.” One Aspie I know experienced great pain throughout childhood for all the effort spent on imitation with the aim of fitting in and being accepted. Such effort and such pain oughtn’t be discounted, I think. I hope I’ve not misread your meaning or overlooked your intent.
“all aspies imitate less as a toddler/smaller child”. Toddlerhood is by far the most intense imitation period in a neurotypical s life, and the one that has the biggest developmental influence on social cognition. An aspie s main imitation period is adolescence and beyond.
I don’t know if its an ASD thing or not but I rarely sit with my feet on the floor. I’ve been a cross legged sitter all of my life. I wedge my feet when they are tucked up under me. When I go out to a resturant the first thing I do is take off a shoe and tuck my foot up on the seat. The other day I took both shoes off and sat cross legged while I ate. It feels good and natural to my body and always has. I don’t have any scoliosis or anything like that. I have degenerative disc disease but I’ve sat this way all of my life, long before this disc challenge.
I’m going to put a couple of my own questions here so I don’t forget:
Do you find yourself getting more autistic as you get older?
How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic?
Oh, right, another question I have (an urgent one): How do you motivate yourself to job hunt? I don’t feel ‘good’ enough for any other job than the one I have, fear the change that comes with getting a new job, fear ‘lying’ to people when I interview (‘do you work well with a team?’ ‘do you respond well to new and sudden changes?’ ‘Oh, sure! I–yeah. I’m great.’), and generally fear *getting* another job, even though I need one. My current one is clearly unstable/on the skids and dead end, so I need out, but I keep fantasizing about ‘out’ being ‘will now live in car with cats and gradually sell off everything I own in order to get some peace’ instead of ‘out’ meaning ‘get another job, reject lingering adolescent fantasies of being able to outwit the social order, and keep current standard of living.’
So how do you job hunt when what you’d really like to do is try to find some way to survive that isn’t organized ‘work,’ when having/getting a job feels like performing in order to get someone to hurt you or in order to gain the right to hurt yourself?
I realize ‘being an adult’ is synonymous with ‘doing stuff you don’t want to do and that seems counterproductive to your own health,’ at least in the modern U.S. But I feel like there has to be some better way to go about adulthood.
That was not meant to be a reply 😐
Hmmm yes more aspie as I age (now 38), I am alexythemic too and don’t cope with any strong emotion very well. I find I feel the emotion apart from the circumstance which caused it and frequently have trouble linking the two. Also I seem to have an influx of emotions all at one time, triggered by some seemingly trivial thing … Possibly a ‘meltdown’.
My impression is that you do at some point link emotions and events, since you’re able to reference the matter. If that’s the case, is it time/distance/perspective that makes the difference, or do others with whom you interact help you work this out?
I don’t know if I am getting more autistic as I get older as I don’t have an official diagnosis as yet, but based on my own self identification in the past month – and in general how I notice more in the sensory area that I react to, I think I am either more aware of it, or I am more Aspie as I get older. As far as emotions, I am very uncomfortable around angry people, and tend to sense when things are off with people. I’ve always been that way, super sensitive. When I was younger coping was hard and I did not understand it and I would shut down, withdraw into myself and disappear as it were. As an adult I do my best to not place myself in situations where people are angry or very emotional. Over the years being in the health and wellness field I’ve continued my education as a professional and use tools that HeartMath teach’s for myself and my clients. It does help.
We often hear about autistic children wandering off. (From the time that I learned to walk I was an extreme wanderer.) Did you wander? Did you “disappear” frequently to the point that was upsetting to your family (or teachers?) Why did you wander off? What do you remember about it? Now that you are an adult do you still wander? Do you disappear (perhaps during sensory overload) without telling anyone that you need to remove yourself at this time? I did.
I mostly wandered because I was curious about the world “out there.” Later, as I learned to speak I would tell my Mom that I was going out. I don’t think that she ever knew how far off I wandered. I was pretty much fearless. At times, I met some dangerous, violent people. Creepy people. My autistic braininess (divergent thinking, essentially) kept me mostly safe. I was 5 y.o. the first time someone put a knife to my throat. I have an intuitive sense about creeps.
I’m 61 years now. I miss being able to spontaneously “disappear.” (I have a sense of responsibility.) I take very long walks nowadays. But I am usually with my adult son. It is not the same. Enjoyable — (we like each other’s company) but not the same. We carry a cell-phone, and that changes the dynamics quite a bit.
You forgot to explain why you cant get rid of your son and leave your cellphone at home …
I did wander as a child. Once I wandered to the grocery store that was about three or four blocks from home (I was about 4 at the time) and I remember walking in, picking up a package of toilet paper and walking out the door and bringing it home to my mother. I remember her being pretty upset with me. I don’t know it is because I wandered off, or that I took the toilet paper from the store without paying for it. I thought I had done a good thing. It was something we used and I knew that. As I got older I wandered, or roamed all of the neighborhoods we lived in. Either walking, riding my bike, or taking a bus. I can say that there was one time when I was out after dark and walking home and I knew someone was following me. Thankfully my dad had been outside sitting and stood up as I got closer and the person following me veered off when he saw my dad. I would be gone for hours at a time and I don’t think I ever said where I was going. Thinking about it now I can see my dad as a wandered too. He never showed up on time. When he went out it was likely that he would not be back when he said he would. It could be an hour, or much more that he would be late. Usually it was the latter. I still roam as an adult. It’s takes the form of going shopping, only I can be gone for 3 hours or more. The family knows that I go and come back on my own terms. I do it in a store with my husband or kids (their all adults) all the time. I’ll be with them one moment and then they’ll turn around and I have turned left or right down some isle. I think nothing of it. My brothers wandered too. One of them who was pretty developmentally delayed found his way from New Hampshire to Connecticut before they found him. Very sadly one of my brothers died in an accidental drowning. He was also severely delayed and had a deep fascination with water and could not swim.He wandered into the river and could not get out. I was no longer living at home at the time so I don’t know all of the details, I just know that he was with the next oldest brother when it happened. I certainly don’t think was a typical story, the severity of his delays, and the dysfunctional home life that we grew up in played a role.
Do (other? I haven’t been diagnosed yet) people on the autism spectrum have some very specific memories? Such as “ah-ha!” moments that you can draw up much more clearly than most memories, involving not only a picture but feelings, perhaps sounds and smells etc. as well and the image is VERY clear whereas most memories are a thought (if that makes sense.)
Excited at the prospect of another set of surveys 🙂
Right now I’m fixated on how often I misunderstand others and especially miss indirect communication, even when others think they’ve been extremely clear. I need things to be really quite direct and concrete for them to be clear to me.
I’ve noticed that almost no one in the big set of autistic blogs I follow writes much about taking things literally or struggling with indirect and figurative communication, even though this is one of the most common things talked about when presenting Asperger’s and verbal autistic people to the general public. The impression I get is that this isn’t a significant problem for autistic adults, but I’m not sure if that’s actually the case or if it’s just considered so fundamental to autism that people don’t mention it.
So here are my questions about that…
Do you often take things literally as an adult or is this something you did as a child but learned not to as an adult? If you understand figurative language now, are you still aware of the literal meaning first?
Do you usually need social information to be expressed in very clear, explicit, direct and concrete language or are you able to understand indirect communication due to learning the rules like a second language?
Do you find many idioms, metaphors and sayings confusing or illogical? If you understand them, do they still distract you when people use them? Do you use idioms yourself?
Do you often find things that most people think are clear and straightforward to be ambiguous, complicated or to have a clear meaning different to the one intended?
Do you often need to know the reason why the information is needed before you can answer a question? Or do you need to ask several clarifying questions before you can give a simple answer?
Are simple ‘yes’ or ‘no’ questions often difficult for you to answer? Do you seem to need to give more detail than others?
Do you find it difficult to prioritise? Or difficult to quickly make decisions? Does this affect your ability to resolve ‘ambiguous’ social communication or ambiguous instructions?
Do you tend to consider things outside of their wider context before you think of them as part of the whole? E.g. first considering something someone has said at ‘face value’ before remembering that person’s life situation; or considering the instructions written on a notice as words alone before considering the cues from the environment or people around it.
…really interested to see how people respond to these! Thanks for organising this 🙂
My entire school history was me giving way too much information in response to any and all questions assigned in schoolwork. I lived in dread of short-answer and essay tests.
It’s still one of my biggest problems as an adult, although I have lots of coping strategies to avoid it in a professional context.
I’m better now at controlling it, but I think, yeah, for me, too, it’s mostly coping strategies that help me avoid circumstances where the problem might occur. I still deeply resent and fear getting assignments like “Write a monthly report on this website’s traffic.” If I have a previous report or template to work off of, I’m fine. If not, I get panicky and have to fight through freezes.
Something else I’m interested in, the overlap between the autistic spectrum and specific learning differences, and also OCD…
As well as an autistic spectrum condition do you also have a specific learning difference (aka US English ‘learning disability’) such as dyslexia, dyspraxia, dyscalculia, nonverbal learning disability, ADHD etc?
Even if you don’t have a diagnosed/labelled SpLD, do you have cognitive traits commonly associated with SpLDs like slow processing speed, below average spelling, fragile working memory, poor concentration etc?
If you have spelling difficulties, has your spelling had much improvement since childhood? Do you still remember how to spell words correctly by remembering how to correct your automatic wrong version? Can you read without ‘reading out loud’ in your head? Can you read faster than you can read out loud? Do you have difficulty pronouncing words you’ve read but haven’t heard said before – even if you’re told they’re said how they’re spelt?
Do you frequently mix up two options when speaking or writing (for example confusing ‘train’ and ‘bus’)? Do you find you often miss out small words or parts of words, or tend to add inappropriate postfixes to words (for example writing ‘specifically’ when you meant ‘specific’, or vice versa)? Do you regularly get people’s names wrong in speech even when you know what they are? Do you repeatedly forget the words for things when speaking? When you make these mistakes do you often not realise that you have, sometimes even when proof reading? Do you make more mistakes of these types when tired?
Do you often mix up left and right? Do you have difficulty judging distance, speed, size, volume etc? For example, do you need to be careful crossing the street because it’s difficult to judge how fast cars are going? Do you find spacial reasoning tasks difficult, for example working out which way up to put the page back into the printer when you want to print on both sides? Do you have particular difficulty performing manual tasks that ‘cross the midline’, ie, your hands cross over and both do different things? Did it take you an unusually long time to learn to tie shoe laces, and if so did you learn an alternative type of knot to do so?
Did you struggle to learn the times tables as a child? Do you still not know your times tables as an adult? Do you particularly struggle with mental arithmetic? Did you have difficulty learning negative numbers and subtraction of negative numbers (without a calculator)?
Do you have difficulty reading analogue clocks? Do you find it a challenge to understand/visualise how the clocks going backwards or forwards when daylight savings starts or end will affect time differences with time zones where the clocks haven’t changed? Do you find mental arithmetic unusually difficult?
Do you have difficulty with sequencing – working out the order in which you need to do things – for example if you were preparing an unfamiliar meal with several elements, would you have difficulty balancing them all without explicit planning and measurement in advance? Do you often realise you’ve done things in the wrong order or in a very inefficient way?
Do you often find it difficult to concentrate on things you’re not interested in? Do you tend to hyperfocus on things you are interested in? Does fidgeting help you to concentrate? Do stimulants like caffeine and energy drinks help you to relax?
Are you actually unusually good at any other the above? For example unusually fast reading speed, learned to read early, extremely good at spelling, usually good short term memory, extremely good spacial reasoning, adept at doing things efficiently without conscious planning, excellent concentration regardless of interest level etc?
Do you have physical or vocal tics where you move part of your body involuntarily, have to exert effort to not do this in public and need to do it a lot more later on if you spend time suppressing them. For example, if you tend to click your tongue or twitch your nose but try not to do this around other people, do you have to do it a lot more when you’re next alone?
Do you have OCD or obsessive compulsive traits, for example hoarding logically useful items to the point where you have an illogically large amount, or being overly concerned about touching ‘contaminated’ dirty objects like the kitchen bin? Do you worry an unusual amount about whether you’ve locked the door or turned off electrical appliances? Do you believe irrational things like if you don’t follow a particular ritual then something unrelated will go wrong?
Do you sometimes attribute feelings to inanimate objects? Do you feel like certain objects ‘want to’ be interacted with or will feel bad if you don’t use them? Do you explain some of your quirks in this way, for example thinking that street furniture or certain textures want to be touched/felt, rather than you want to touch them? Or does it feel this way but you translate it when talking to others?
Do you struggle to visualise things and tend to think in words, or alternatively do you naturally think in pictures and have to translate to words? Do you ‘hear’ words or ‘see’ them when you think? Alternatively do you not fit either of those models and think in some combination of them or think in some other kind of unusual way, for example in spacial relationships or in tactile sensations or motion?
If you’re asked how to spell something, do you ‘see’ the word and read out the letters or do you have to work it out from the sounds or simply remember the sequence? Do you have difficult learning how to spell new words or speak/write new languages?
When you mentally solve non-verbal problems like splitting the bill and working out the tip, or like how to seat everyone at a wedding dinner, do you tend to think them out as mostly word-based problems using verbal reasoning or do you visualise or conceptualise them in other ways?
…this is probably way too many questions already so I’ll stop now! Sorry if this has repeated anything from the last set of surveys.
Oh dear that really is too many questions. I only stopped because I noticed it was 2am on a work night. Sorry
Ok I actually read all of them and minus one OCD question I can say an astounding YES to all of them…Crazy.:)
So then I guess the follow up question is, given you have so many dyslexia, dyspraxia, dyscalculia, non-verbal learning disability and ADHD traits (because that’s what these questions were listing), do you also visit sites, read blogs, books etc to get advice for specific learning disabilities, or do you only focus on the autism side of things?
I have NO idea how I got through school so well ( I am a fast reader and catch on really quick) but yea, I have never been officially diagnosed with any of the learning disabilities because I actually did quite well considering ( high average to high marks on everything except barely passing Math with a 50.) I am severely dyspraxic so I DO read up on the UK site for Dyspraxia but have not found many blogs with it and dealing with Autism and the traits overlap A LOT. I also saw a psychotherapist who wanted to diagnose me with severe ADD but she was missing the diagnosing part and she was crazy mean so I quit her…otherwise…basically I concentrate on the Autism side of things because it tends to cover so much. I would LOVE to have a wise psychologist who would diagnose me and help me with all of these things but have not ever found one…
That’s not too many (well in my opinion) – they’d be great to answer. In fact I’m twitching to answer lots of the ones on here
Thanks for saying so 🙂
Oh, I was going to ask the left and right question:) To see if I wasn’t the only stupid one(!). If I couldn’t write and therefore didn’t know my right hand was my writing one I would be stuck! And I remember which hand & finger a wedding ring goes on by visualising a stage show I saw and the actor with the ring on with relation to me.
Terrible at tying shoelaces – happily Velcro was in for trainers when I was young. I have trouble visualising large spaces in my brain when reading books, does anyone else have that? I’d like that added as an extra question.
Yes, to a lot of these, now I’ve got everything going – I thought I was just an aspie:S I did work with someone with OCD once and I thought I was worse then him, but he may have been covering it up.
I am neurotypical and my very aspie friend asks much more questions, shows often her bewilderment because of things that are perfectly obvious for most other people, and often needs more time before giving an answer. She also requires or even forces her friends to communicate in a very direct way, which works pretty well, once you get tuned in. I think without her efforts it would hardly be possible that we had good conversations.
I am just on tenterhooks when she is asking the waiter or shop assistant thousands of questions in a crowded restaurant, before passing her often special order,and the fact that she likes to complain about everything she does not like or turns out differently from what she – often wrongly – expected, makes me shudder in advance. When she gets upset about something or others start getting angry with her without her having the slightest idea why, my otherwise good “accomodation” skills often hit the wall very quickly.
As for the context-blindness (a term an aspie painter has used to explain her paintings and which summarizes most of the difficulties you mentioned), I believe that aspies are simply not aware of how far it goes. Many for example think that they can handle written language much better than spoken language, and while having more time and more relaxation makes it easier for an aspie to get out of a hyperfocus, written language, unless it is abstract or providing a lot and the true explanation, is often even more demanding. Reconstructing the missing context requires even more psycho-social guessing and even a deeper understanding of people issues.
I think it is this complexity an aspie cant handle. Our “horizon of expectation” is much larger than an aspie s one, and the reason is that our “hermeutic circle” turns much quicker and in much larger loops than yours.
But your down-to-earth horizon has also enormous benefits.
One more question! Other people’s questions remind me of ones I’ve had sitting around in my brain.
Is your primary fantasy ‘stopping’? In school, I used to fantasize about spontaneously dropping unconscious. As an adult, I fantasize about leaving the social system entirely. Quitting my job, slowly using up all of my money, living in my car, getting as far away from people as possible… Just not participating at all any longer. This is a very damaging fantasy, because I have to work every day not to make rash decisions at my workplace! I think not having any kids makes it harder to derail the fantasy. I have no dependents other than two cats, so working every day just to keep myself alive to work another day can seem very Escher-esque and futile. Especially since I never take time (nor really want to) to date. So it’s not like I have any hope of my life condition changing in future… Everything in my life seems arbitrary, like a performance to convince other people I’m still a participant. The ‘stopping’ fantasy is about no longer performing.
To be quite honest, that fantasy is slowly becoming reality for me. Whatever you do, do not watch the matrix. It was detrimental to my societal heath, I just couldn’t bear to live in the fantasy of the American dream, because I was hardwired to not participate. I am slowly creating my own world away from people, but keep them near enough that, if needed, they are there. When you can think more rationally and clear from emotions or conventional standards, your mind is left to wander and wonder about alternative lives, some more fitting for those who do not fit society so well. I believe jobs are something that we have more an option on than we think we do, but I do caution that the longer it dwells, eventually the more you can rationalize dropping society and living as free as can be in a world created for NTs. I feel we have the ability to think more abstractly about emotional issues, like societal advancement and question its purpose in a way that NTs just accept that’s how it has to be for social or emotional gain, in which we do not. I do not want to generalize, but I do believe we see “outside of the box” in some situations not typically contemplated even once in a conventional NT brain.
“I feel we have the ability to think more abstractly about emotional issues, like societal advancement and question its purpose in a way that NTs just accept that’s how it has to be for social or emotional gain, in which we do not. ”
I agree on that. And I also see the danger in my fantasies about dropping out–it would be so easy to drop out and I’m certain that once I did, I would prune away more and more and more, getting rid of the energy and abilities necessary to ever climb back *up* that ladder. It’s a scary thought, to know that my most tempting fantasy, the thing that feels mose right, is also likely the worst for me in the long run… It’s like living on a cliff edge and having that strange self-destroying desire to jump all the time.
And it’s funny you say don’t watch The Matrix! I actually love The Matrix. It was my first fandom. I empathized with the Agents, not the main characters 😉 I loved the scenes where Agent Smith downloads himself into a human body and then gets all weird about being human. The thought of once having been part of a big perfectly-ordered system (as an Agent) and not having to think about one’s place in that order and then getting shunted out into a human body and human disorder was brain candy for me. In retrospect, it mirrored my own (continuing) confusion about being human and my desire for order, purpose, and an unshakeable self-erasing sense of belonging. I’m probably one of the few people who would take the deal to get plugged back into the Matrix but *only* if I was converted into an Agent. (Also, I feel like the lucky bastards get to effortlessly present as male without actually having to worry about sex and gender issues.)
Let’s see if this comment ends up in the right place…
Yes. Absolutely, yes. All through high school, I daydreamed of escaping. When I turned 21, I actually DID drop everything, leave everyone, and disappeared. I quit my job and moved 1000 miles away to live in a vehicle. It was fantastic, even though I struggled quite a bit. Finally living out that fantasy was amazing, though I now acknowledge just how much it must have hurt everybody that loved me back home…
Unfortunately, I’m dreaming of doing it again. However, this time it won’t be as easy, because I have student debt now. I want to drop it all and run off somewhere new again, but I can’t risk being unemployed for too long.
I always used to indulge in this by simply driving around in an attempt to get lost, but ultimately always coming back home at night. I think I need to get into doing that again. I’m pretty sure that this almost-but-not-completely-dropping-everything driving hobby of mine helped keep me sane for a long time…
My question – Is liking or disliking foreign travel related to ability to pass for NT at home? I can pass (with some work) in my own country whereas in another country I dont know the rules so it is just stress.
The nice thing about foreign travel is that you don’t have to know the subtle social rules. You can make a faux pas and in general you will not be judged personally. People will accept you as being different, because you are different. That has been my experience.
I recognise that when allistic people travel to another country, they are in the same situation as I am when living in my own. It can be exciting, confusing, enlightening, or exhausting, or a combination of these things.
Hi Ian
I find being outside my native country easier. I am an European living in the US. Here people attribute weird behavior on my part as European culture 🙂 plus more weird people live in the US, which help me fit in better. Just today I met a lady with 24 pets. All sharing one name. Great idea 🙂
this may have been done before. My question is about lying. I think this is an ASD trait. Do you get fooled by others? Are you gullible? do you think lying is morally wrong and spineless and weak? Do you think lying is stealing? Do people who “only think its wrong if you get caught” disgust you? Do you feel guilty and bad when you can’t think of a way out of something other than lying? Do you not understand why lying is so well tolerated in our society? My daughter has more of a diagnosis than I do, and has less trouble with lying than i do. She’d rather be told “it’s okay” than the truth. But I am the opposite.
For what it’s worth (not as much as the personal experience a survey would return) I feel that I have observed a rather intense relationship to the truth in kids on the spectrum with whom I’ve interacted. Not that they are totally incapable of lying, but that it seems to be a supremely uncomfortable thing to do, when it happens, and at other times it’s as if they’ve been given truth serum and admit things without even being asked. It’s one of the traits I love and find dear.
Here’s something I want to know if other aspies experience:
Do you ever feel like you’re living on a different scale of time from other people? For example, do you hear about a new TV show and only watch it years later because it just didn’t seem urgent?
Yes, but not just television. I watch films years after the fuss has died down. Music too – when a band is no longer popular I will start to realise what it was all about. But its not just media, its life too. My NT peers go through life faster than me (or I regress relative to them) – first job, first car, first house, marriage: I came to all of these later and later relative to others
Yep. In fact, I feel much more comfortable watching something ages after the hype’s gone down. Somehow TV/films that are a few years old (or even a decade or so), on the small screen, are less–stimulating? Intense? I also like to be able to assess a show before watching it. Like I’ll go through the episode list and see how many eps are directed or written by women, or use some other criteria to decide whether to watch it.
I’ll also hold onto ideas for months or years and maybe eventually get around to carrying them out. And by “ideas” I mean things like, get a pair of pants re-hemmed. Or buy a sofa. I went two years without a sofa, until my mother gave up and sofa-ed for me. (I got a call one evening. “There’s a sofa coming to your apartment tomorrow. Be there.”) I seem to consider things optional that other people don’t. The floor was acceptable, sofas are expensive, therefore no sofa. (Though, man, do I like having it now that I have it.) My father used to do this with things like cars, which meant my mother was stuck driving around a rust-coated van that occasionally just stopped dead in traffic because my father couldn’t think himself around to paying for a new vehicle…
This is a personal question, Otterknot, so disregard if you so choose, but I’m wondering whether you have ever delayed on aspects of your relational life, as well – postponing the start or end of a relationship, regardless of how you might be feeling about it. Again, please don’t answer if you’d rather not!
No worries. I’ve done a lot of delaying. My first serious relationship was in my mid-20s. Before that I sort of vaguely pined for a relationship but didn’t have the first idea how to get into one; I had to be aggressively pursued by someone who had a take-charge personality, in the end. And ending that relationship was torture. I intellectually knew I needed to get out from about three years (of five) in, but the last two years consisted of me constantly mourning the relationship (even though I was still letting it continue) and trying to get my SO to take responsibility (or at least share responsibility–that is, agree with me that ending it was the right thing to do) for ending it. And then attacking my SO, while still trying to emotionally manipulate her into continuing to provide me emotional support during that time period. The way I behaved was so irrational and crushing to me that it’s why I started to consider that I might have ASD. (Obviously, not everyone with ASD behaves as poorly as I did! But I felt so ashamed and baffled by my own behavior and emotions that I felt compelled to find some way of thinking about them that might help me understand them.)
Thank you for your reply. That sounds complicated and painful. Understanding can come by such hard routes. You seem to have a great deal of clarity now, whether that’s retrospect or growth or learning from the diagnosis. Whatever the case, I appreciate your sharing.
No problem! It was painful but I learned a lot about myself and I would take back the pain we caused each other in a heartbeat, but not the the learning from the experience. Talking about it is always useful to me, as long as it is also useful to others. 🙂
I know some people with chronic fatigue syndrome find old TV with its leisurely pace and static cameras/lack of multiple camera edits easier to watch so could this be a similar thing for ASD people? Also as well as narrative styles, acting styles are always changing so could old styles of acting be easier to read?
I think there’s definitely something to the older-TV-being-calmer-TV thing. I have a lot of patience for things like the old black-and-white Doctor Who serials; there’s no hurry to them. They suggest a world where there’s time to mess around and tell an imperfect story that doesn’t have to mirror reality with hyperverisimilitude. (To be super-ASD, they feel less like ‘lies’ because they seem to be honest about ‘lying.’)
Makers of new shows like to say their shows are more “real” than old ones but they’re all fake really. The other helpful thing about old TV shows is they tend to have more “interesting” looking actors whereas new ones tend to have lots of attractive but similar looking actors. I like ‘Once Upon A Time’, but I have difficulty telling the difference between “Belle” and “Snow” close-up and I don’t think I’m too bad on faces!
There are so many posts I want to respond to here, it’s almost overwhelming. I cannot believe there are people who actually experience some of the same ‘strange’ things I do. I get very uncomfortable when people tell me ‘oh you HAVE to read this book or [more usually] watch this TV show’ and then keep asking me about it until I’ve done it, or I can make up a good enough excuse as to why I haven’t. I detest fashions, trends, fads. I never know which ones to prioritize. They are seem equally important, in that none of them seem remotely important – or interesting – to me at all. I feel anxious when a new big ‘thing’ comes out, as if ‘oh here’s yet one more thing I have to study so I can fit in’. Now I rebel. I watch shows or, very commonly, read about them online (I like to see words more than hear them) when they are done, or when nobody is talking about them anymore. I watched all five seasons of Breaking Bad in two-and-a-half weeks, ten days after the final episode, even though I had already read all the episode lists! I was able to concentrate more on the show, and all its great details, without all those other distractions.
If I may take up Cynthia’s first question from above (Do you find yourself getting more autistic as you get older?), with a specific twist:
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? Being in my sixth decade I notice a gradual social withdrawal, often feeling too tired to make an effort to meet new people.
I am not yet completely done with going through the previous surveys, so I ask for forgiveness in advance if this topic was already covered.
I have a question that is specifically for people who menstruate, which is: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perseption, abilities to cope and/or compensate, EF, etc.
In general, people who menstruate experience all kinds of changes during their cycle*, but with us I suppose some of those changes are more related to autism than others.
*I read somewhere that this was the reason that ‘women’ are more in tune with theirselves and their bodies than ‘men’ are, because they are used to the changes during their cycles. (of course in the book they used binary gender, that why I use the ‘ ‘)
YES. PMS is often about three days of EF and emotional hell. Whenever I realize I hate the world, am very tired, don’t seem able to focus on anything and keep fixating on thoughts, I know to look at my calendar. Sometimes I wish it were kosher to just take those three/four days off every month, because I know my productivity will plummet as I focus on simply hanging on to my life with my fingernails, and that I will get the most done and feel more stable if I isolate, do handwork, and have the ability to eat, sleep, and walk outside according to my own schedule.
I have similar problems when I ovulate. I’ve only in the past year or so realized that ovulation is an issue (TMI, but for anyone who was clueless like me about ovulation, it’s that time of the month when you don’t bleed, but you produce clear mucus. Hooray for vaginas with the sniffles?). I can have very PMS-like symptoms during ovulation but they tend to last about two days, not three or four.
So that’s about a quarter of each month where I go into survival mode while my coping skills take a vacation.
You know, you have a really special way with words. 🙂
That’s one way of putting it XD Thank you.
I too have only just realised in the past year that ovulation plays a part as well. It’s ‘PMS’ twice a cycle, basically. So I think questions should ask about the whole cycle, and not specifically the period before menstruating.
(One of my pet peeves is how “she must be on her period” is something that people use against you, but apparently you can’t use it to indicate that your productivity, mood or coping skills may fluctuate.)
I agree, about asking about the whole cycle. I think it’s a shame how poorly-educated people are about the workings of bodies.
That’s a pet peeve of mine, too, since I know that PMS/ovulation do have an enormous effect on me, except I’m supposed to ‘suck it up’ for the team. I think it’s a misunderstanding of feminism, this pressure to have women not articulate their relationship to their own bodies in order to appear less vulnerable/more identical to men and in order to give men fewer openings to undermine women. Ideally, men and women would talk openly about and respect biological differences between individuals, not try to fight down showing or addressing those differences out of fear or shame.
I have been charting my “off” days and my 12th and 13th, along with my 18th, 19th and then my actual period are all problematic in differing ways. ( I ovulate twice…yup its a rare possibility…) I also wrote two posts on PMDD and I think a lot of Autistic women have more pronounced cycles that can relate to PMDD….read the bottom one first and see if you relate:
http://worldwecreate.blogspot.ca/search/label/PMDD
Also, once I wrote a post on using cloth pads…seriously the biggest healthiest change in my life ( or the Diva Cup…) I can write it publicly once again or email anyone it who is interested.
Where can that post be found, Kmarie?
Here I just reposted it: http://worldwecreate.blogspot.ca/2014/07/natural-sensual-menstruationor-ways-to.html
I agree with otterKnot…they did not improve my mood much but perhaps perspective:)
Great post! I wish I had learned this stuff years ago. I feel so healthier since I stopped using disposables.
I love my cloth pads. I buy from Cozy Folk. They haven’t done anything for my mood (other than make me go, oh, pretty and soft!), but they make me feel greener 😉 One of the *nice* things about being ASD is I find myself more willing to consider alternatives to ‘normal’ consumption of products like disposable pads, plastic trash bags, etc., than many people seem to be. (Also, they’re very easy to take care of. I was worried they wouldn’t be, but they’re a cinch.)
The diva cup is great once you get the hang of it.
Yeah, but getting the hang of it is the difficult part …
True, especially for those of us with poor fine motor skills.
My cycle, including periods and being pregnant or breastfeeding, definitely affects how autistic I can be. Executive function, social ceiling, language skills all fluctuate. I am at my best when breastfeeding.
Yes. I am, in fact, diagnosed with PMDD (pre-menstrual dysphoric disorder). A few days – sometimes quite a few – before the period hits, I have what I call a hormone drop. It feels like the bottom has been yanked out from under me. I lose all focus; have quite frequent panic attacks; short term memory disappears; strange, instant depression falls on me; I lose proprioception and need to stim much more; my inability to speak becomes severely problematic. The worst time it ever happened I went from fine to suicidal in 2 hours. I couldn’t understand what was happening, but I did know to reach out instead of internalizing, which is more natural. That probably saved my life. Nowadays it helps that I can turn around and ask my husband, who keeps much better track of these things than I do, if it’s nearing that time of month. I can keep myself focused on the fact that there is an end to this around the corner and give myself grace to just lounge around and not get anything done until I feel better.
I’m pasting in Mados’s questions here so I remember to included them:
Travel Questions:
– 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)
– How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?
(Please pick & choose, and feel free to rephrase my perhaps clumsy formulations)
I recently just flew after a several year hiatus on a plane, and I must say that, being my first time going alone, it was quite the nightmare. i’ll explain as best as possible the difficulties:
– planning: luckily my husband keeps me on track time wise, and made sure I printed my tickets with no issues and checked in fine and all, which I was able to do successfully alone on the way back.
– navigation: I am easily lost and a double checker, well let us be safe and say quadruple checker, so I stood in front of the flight query and looked at my ticket, my flight and the screen over and over until I felt I knew what to do, butt still found myself wondering around the airport, thinking is this exactly the gate I need to be at….it is the right number, and right flight, but is it “the one”? I was unsure, but luckily arrived hours early to figure this out. Be early! it helps give you time to be lost and then lost again, until you find your correct gate.
while waiting for your flight: I frequent the bathroom when I am feeling overwhelmed, sometimes I just go in, sit for a moment in a stall and go back out into the busy airport world. I like to think people just assume I have had too much water 🙂 I also find a nice quiet corner at my gate, even if on the floor, and read a book or listen to music with headphones, keeps people from asking the awkward question “so where are you headed? for what?” — same applies to the flight, read a book, then you’ll be free from small talk.
The Flight: READ, READ, READ. I was reading a Richard Dawkins book that allowed me to become one with the fact of possible death by flight and help to keep my mind deep into non-fictional science rather than anxiety (possibly bring along a subject of obsession, to sort of hyper-focus for the duration of the flight), I did find comfort in reading a subject that made flight seem minuscule. I will say that I still wept during take off and landing, the anxiety was too much. Not even necessarily situational (ie: flying), but rather the rough edge to my overstimulation of a busy airport and stressful navigation of such coming to a brief close. Xanax helped to unnaturally alleviate anxiety, reading helped as a coping strategy. As well, I had sunglasses handy if the plane became too much, and I wanted to see the surroundings with at least a filter, and/or to hide the fact that in overstimulation and panic I tend to get watery eyed.
one lesson I learned from flying: invest in first class if you are able, the seats were rather close and I did not want to touch the person next to me and it became rather uncomfortable and exacerbated my anxiety related stomach pains….had I a little more room, I may have avoided that. I also made the mistake of not letting it be known that I needed a nap and alone time immediately upon arrival, because I was quite bitter the rest of the day.
This may not be helpful as in it’s my own way of coping with dreaded travel by flight, but may be helpful from one point or another.
A question that I did not come across yet = not necessarily a new one: Is the fascination with certain topics (sounds nicer than ‘obsessive interests’, doesn’t it ? ) usually a life-long one, persistent over many years, or subject to change ?
Looking back, I observe a pattern that my focused attention (also sounds nicer) appears to last on average three years, with the exception of gardening. And of course cats ! And books ! And … Usually I don’t return to an outdated interest and sometimes even find it boring. Maybe be then I know all about it? 🙂 New input required as brain food !
Trusting other people – over the years I have learnt that I am very poor at reading peoples intentions and have been taken advantage of. I have adjusted to this by needing to understand what is happening and needing to be able to logically join up what someone does and says into a consistent picture – or I dont trust them. This is both a lot of work and probably over reacting and unfair to a lot of people who are not wired for logical linear consistency. How do other people manage this.
Main question:
How do you cope with strong and complex emotions in other people, and how do you support someone going through a very difficult time emotionally (nothing practical to be done)?
Offshoot questions:
How do recognise what the feelings are, and how do you respond in a way that comforts the person?
How do you remember what’s happening over time when other things might be more obvious?
How do you cope with your reaction to what’s happening so not to burden the person who needs support?
Do you ever have a meltdown because of all the confusing and upsetting emotions and end up with the person who needs support trying to help you? How do you avoid this, and how do you recover from it? (It is humiliating, embarrassing, and very bad for self esteem when this happens to me and it feels like hurting the person even more so I’d greatly appreciate any shared experience.)
How do you comfort someone who is hurting emotionally, especially if you are a person who’s often told they can be “cold” or “distant”? How do you show how much you care and want to help?
Dear JK, as someone who has been on the other end of the situation you describe, I feel grateful for your post. And I would add that I wasn’t so helpful, either, in my needing-help role, in the situation I’m thinking of, because I came into it with a lot of assumptions. One was that my needs and feelings were entirely obvious, which I now believe wasn’t true and wouldn’t have been true for anyone – in other words, the “failure” was as much in my communication as in the other person’s perception; another assumption of mine (founded in childhood experiences) was that any failure of connection or support was a sign of intentional cruelty on the other person’s part, which – even if it might otherwise be true, which I now doubt because I believe we’re all more often in defensive than in offensive mode – would depend on an understanding of my feelings and context, and that, again, isn’t usually possible without verbal explication; and a third assumption was that strong feelings of love and connection at most times necessarily implied a kind of mutual understanding, which is a romantic way of thinking that’s not necessarily viable in real life. I’ve come to believe since then – too late for the past, but hopefully in time for the future – that the ability to express how one feels, and be heard and responded to, is far more valuable to a relationship than intuition. I value intuition and try to make use of it where appropriate, but it’s more helpful as a starting point than as a conclusion, probably. My advice to someone experiencing what you describe would be to establish within your relationships the freedom and comfort to ask questions, seek clarification, and solicit ideas for the best way to be of support. No one should have to prove their love through guesswork. Identifying one’s own assumptions and sharing them with another is a valuable exercise; speaking in code, and translating said code, doesn’t work out so well for non-autistic folks a lot of the time, either. I think it’s okay (read: good) to work out with each important person in your life what “showing care” would feel like to that person and to you, and I think verbalizing your intent and desire to care and then *following through by listening to the response,* is tremendously valuable. It can’t be said too often that emotions don’t often seem logical to the person not experiencing them – we need to trust and respect the internal logic of the other person’s experience, before moving on, when appropriate, to offer (kindly) any counter-perspective. I hope you see this because, again, I’m so grateful for your post – the depth of your caring about how these situations have gone for you offers me a great deal of comfort, albeit not from the source I most wish it might come.
Thank you very much for writing this. It is really helpful and I will read it again to make sure I’ve taken it all in to think about.
I’m glad if what I had to share about my experience struck you as helpful, JK. As I said, it’s helpful to me to process things. I myself was described in almost those very terms – as having “strong, complex emotions” – and the fact that those emotions caused someone to shut me out, as being too difficult to comprehend or cope with, was about as painful as a thing can be. Neither of us knew the things that might have helped us at the time. I hope that your experience can be different.
Questions:
1. Have you dated knowing you had Aspergers/Autism? If so, when and how did you disclose? How did that turn out?
2. How did you go about getting someone to date you? I am a 40 year old woman who was diagnosed this past April. I have never dated. I got asked once — I said yes and he never spoke to me again. When I have asked, the answer has always been no.
Possibly too many questions but I hope there’s some fun stuff in here. (This is a snapshot of my brain at 3.37am). Sorry, if these questions have been covered before I haven’t read all the previous survey q’s.
Do you think you would have performed better academically if you hadn’t devoted part of your brain power to performing “normally”?
What [stereo]typical ASD trait you lack would you want to have? Eg maths genius 😉
What can’t you still believe everyone doesn’t think?
Do you pursue your latest interest in different ways to what you‘re supposed to? Eg I don‘t have collections but I like making lots of screen shots from DVDs and I don‘t follow celebrities I like on twitter (feels like stalkering).
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 you are interested in something typical for your gender, eg fashion for girls, are you interested in a different way? Eg hats not shoes or historical costume rather than being “bang on trend”?
Do you feel like an animal in human clothing?
Do you prefer hair to teeth?
Do you dislike wearing jewellery?
Do you have difficulty concentrating when listening to radio/audio drama?
Do you have to have the pointed end of an object (eg a pencil) pointing away from you?
Do/did you think your traits are part of your horoscope?
Do you secretly think your favourite film/TV character is really an (undisclosed to the viewer, if not themselves) aspie, except the show runners make them articulate (otherwise all the viewers would turn off) and they’re not Sherlock Holmes?
Biggest hope for the autistic community?
I LOVE these questions…I DO prefer hair to teeth, I can not listen to podcasts or audio drama or classical music without going batty but I love music, and I always have to have a pencil pointing away from me…WOW> I have never had anyone point out those nuances before:) I love the rest of your questions…
Thank you:)
I was wondering if the inability to concentrate on audio dramas was just me or an ASD thing so I had to ask. I worry I’ll fall over and blind myself with pointy things so I have to have them pointing away.
Some very quick run-by answers! Yes, I think I could have done a lot more if I’d been left to teach myself some things instead of being forced through the conventional school-and-college path. In particular, I don’t think I would have given up on art (I was very artsy until high school burned me out) and would have become a handworker of some sort. I do think I learned some important things in school (mostly how to articulate myself and how to make a basic plan), but some time to recover from school and some support for my own weird activities would have been great for my self-confidence.
I have a hard time with jewelry. I like it, in theory, but I rarely leave myself with time in the morning to think out what would look good and put it on. Sometimes I ‘forget,’ for a while, that I can buy it and wear it. It becomes something outside of my sphere of engagement.
I’m watching Hannibal right now, and I swear Will Graham is on the spectrum. He even has an early line where he says he’s ‘more toward the autistic than the narcissistic end of the spectrum.’ The show creator swore later that Graham is *not* autistic, probably because Graham’s disorder is presented as hyperempathy (which, of course, no one wants to believe that autistic people feel empathy…). However, the way he doubts his own reality and borders, and his fear of being around others because he can imagine doing *anything* and imagine how someone would justify it to themselves, is very familiar to me. Part of why being socially around others is hard for me is because if I am given insight into how someone else works, I will mirror-think and feel that my own sense of self is threatened–I lose track of whether I’m behaving in a particular way to make someone else feel comfortable and be happy or whether I want to behave that way. So Graham hits close to home.
I also think Fred Burkle from Whedon’s Angel was on the spectrum, because she’s essentially me (or at least she felt that way to me when I last watched the series). Wesley Wyndham-Pryce from Angel/BtVS felt very similar to me–and he kept sticking to his own ethic code even when it required being hated and condemned by those closest to him, which felt ASD-ish. I don’t think either character was ever confirmed/denied as ASD–the shows came out back before ASD was a publicly-discussed thing. (Oh, right, I actually wrote a blog entry on essentially this character-overidentification topic: http://otterknot.wordpress.com/2014/01/19/megalomaniacs-and-folks-who-mean-well-identifying-with-characters/).
I’m pretty sure that Hugh Dancy was cast in Hannibal because of how well he played autistic in Adam, so it’s not surprising that there are parallels, and yes the pilot makes it clear that he’s meant to be very like autistic people but not actually autistic.
Oh, I hadn’t heard of Adam. You’re right, that would make perfect sense. Hannibal is handling mental difference in interesting ways; I feel very strongly for Graham and his desire to just hang out with 10 dogs and make fishing lures while still feeling compelled to do work that harms him in order to get approval and support from NTs and have a sense of purpose and ‘prosthetic’ exterior grounding mechanisms. I wish Bryan Fuller (the show leader) hadn’t felt compelled to say yea or nay on Graham’s ASD status.
Adam is worth a watch, not that it’s not problematic in some ways, but it’s interesting to see how Dancy plays the characters; in which ways they’re alike and which ways different. Also it’s one of the very few Asperger Syndrome romantic comedies, which makes it pretty notable.
I watched an episode and a half of Hannibal, enough to see how it fit into tropes of autistic characters and not, and compare it to Adam. And enough to conclude that it was absolutely the last show I should be watching – someone vulnerable and like me in many ways being exploited, abused and gaslit by the people around them
I understand why other people like stuff like that though and I can see it’s a hugely well done show that I’d otherwise love, I’m just glad that I (eventually!) worked out the negative effect that kind of show has on me.
I understand that reaction to Hannibal perfectly. I started watching it with a sibling, which is the only reason I *kept* watching it. She hates to watch TV shows on her own, and I was the only person around she felt wouldn’t judge her for wanting to watch it. For the first few episodes, I was very much like, I shouldn’t watch this, how can I tell her I need to stop watching without looking unstable and judgmental, for exactly the reasons you describe; I was super-disturbed by it and twitchy for two weeks. Graham’s mental state (vulnerable, in need of someone to help him define his worth and reality) is/was way too familiar–and the show’s material is so very very dark. I’m not sure when the show became palatable to me and when I felt less threatened by its potential to bleed into my own mental state. Now that I’m typing this up, I really am curious as to what made the difference because now I find watching the character almost comforting. Maybe because Graham gradually starts to say, I know where I end and other people begin, and someone is messing with me here.
Media’s hard stuff. I think people underestimate how much the mind takes anything where it sees real people doing things as emotional, if not intellectual, reality.
Annnnd now I will stop talking about Hannibal because it is grade-A disturbing and I don’t want to trigger anyone (my apologies if I already have, thoughtlessly). (But if anyone else has watched it and wants to chat about it, feel free to ping me on my blog.)
Thanks for your reply and link to your post – I loved it 😀 Interestingly the TV character question was partly inspired by reading a fanfic with the Master (the Ainley one) portrayed as asexual. Is he? Isn’t he? I can’t say but someone saw it in him.
I hope my fictional character q is used – hours of fun & interesting. I think a lot of TV detectives are ASD – their obsession is solving crime – handy, have no social life/skills (the nearest thing they have to a friend is their trusty deputy), often have some quirky interest, are dedicated to THE TRUTH, everybody outside their team thinks they’re a weirdo or they’re out of step with them, they’re often deceived by others (all their ex-partners are murderers). Also Bill Nighy’s (or maybe all Brit rom-com actors?) character in ‘Wild Target’ (2009?) is very ASD, he’s 55 and he’s just stopped living with his mother (she’s pressuring him to get a girlfriend because his Dad had him when he was 56 – slower than others to start having serious relationships), wonders if he is gay or not because he doesn’t have a girl, is socially awkward, is slightly OCD i.e his furniture is wrapped in plastic and in my fave part when his apprentice Rupert Grint is practising shooting (badly) he asks he if he want’s him to look away in case he’s putting Grint off (performance anxiety). The film is sadly average.
Yes, you have to plan what to wear jewellery with. I do like looking at pieces though.
Curses, I had a long reply typed out and then lost it! In general, the Time Lords in Doctor Who are often identified as asexual and/or ASD by asexual and/or ASD fans. I think it’s because of the old ‘they’re not human’ trope, just like Vulcans or androids or any of the other many characters who stand at one remove from mainstream human sexual and romantic conventions and who have strongly ‘logical’ interests that mean that others have to accommodate (and even admire) their eccentricities if they want to work with them. The detective type, as you note. I personally see at least a few of the Doctors (at least the ones written by Russell T. Davies–Nine and Ten) as sexual/romantic (two of my favorite Doctors, though I also like Three) and I see the Master as always sexual/romantic, but in a very shallow surface way–that is, he’s comfortable using sex and romance as games, like he’s used to using just about everything else as toys or games… At core, I see him as actually very insecure about romance and sex–perhaps some projection on my part 😉 All my own opinions, of course. (I think conversations about characters and ASD can get so long and involved and passionate because talking about characters lets us talk about ourselves, our self-projections, in a way that feels safer and shielding…)
I love thinking about buying jewelry. I’ll spend way too much time on Etsy, even though I know if I buy things I won’t wear them…
Oh noes for your lost long reply, grrr. Poor old Master he has a lot of problems doesn’t he?
I have a big box of necklaces and bracelets I should get rid of because I never wear them but they’re too pretty.
I have to say this. I’ve been trying not to. Jewellery is one of my special interests and I obsess over what I wear on a day to day basis even if I am not leaving the house. I love the details and could info-dump to a shocking degree about eras, styles, and stone hardness (mohs scale). I love jewllery and as a child would drag my mother into *every* jewellery store we passed or make note of where we had seen a shop so that I could visit it later even if we were in a foreign city. But you would not know it to look at me. I don’t wear a shocking amount of it and I own nothing flashy or ostentatious. I have strict personal rules about what I am allowed to buy and what is tasteful and appropriate for my life and activities. It also takes me a long time to get used to a new piece of jewellery so I go long periods wearing the same three or four items.
Ah the mohs scale:) I used to be into rocks and minerals as a child and would collect rocks on walks and find out what they were. My best find was some fool’s gold.
Yes! rocks!
I personally love the idea of *making* jewelry. Some jewelry is so tactile. (Also, I think people really don’t do enough with the touch qualities of jewelry. There’s a lot of potential to make stuff that both feels satisfying and looks good and people rarely seem to think about feel…)
I feel the same. I love touching jewellery and if it doesn’t feel right it affects weather I will wear it or buy it. I have thought of taking a metal smithing course but I have poor fine motor control, weak hands, and worry that I would be frustrated. I also tend to be very wary of hot things. I love Edwardian and art nouveau jewellery the most as the details are just so wonderful, but quite allot of what I own is mid century. I don’t like most modern mainstream jewellery because there doesn’t seem to me to be that much art to it anymore and it is really just stone setting (although there are a few amazing designers out there today).
I’m sure I must be missing something but …explain the ‘Do you prefer hair to teeth?’ question some more? It just seems very strange. It’s as if you’d said ‘Do you prefer sandpaper to shopping lists’, like, they’re for different things and not very interchangeable? Is it if I only had one which would I prefer? Am I missing something huge?
Oh wait, I just thought of a social meaning, that it could be a question about preferences for attractive attributes in other people? If so, then that lag is very typical of the types of social communication failures I experience
I had the exact same processing lag and eventual realization though I’m still not confident that it was the correct conclusion. 🙂
Lol…that is the conclusion I came to too…preference of attraction to hair or teeth…For some reason hair is a really big deal to me…whenever someone chops off their hair short I take FOREVER to adjust and I am more prone to picking little tiffs with those closest to me who do this ( guys who shave off their hair particularly the worst…) I don’t know why because if someone gets braces ( like I did for a few years) I find it easier to adjust or even find them geekily attractive…but shaving hair off or chopping it short if it was long…I can’t adjust. However if it has always been like that relating to them then it is no big deal…So maybe it is a change thing? I still prefer longer hair on men.
Well I’m glad it wasn’t just me who was completely confused by that then worked out a possible social explanation a little later 🙂
I’m not sure if having braces is comparable to shaving your head. It would be more comparable to getting a really interesting dye job or elaborate distracting hairstyle, like adding extra interesting stuff to your hair – braces mean your teeth are still there, there’s just this cool extra thing there to look at too. Having all your teeth removed would be more of a like-for-like thing, but that’s not something that happens much without a dental prosthesis or dentures, which is then more comparable to wearing a convincing hairpiece.
I guess logically hair has more of an effect on people’s appearance because there’s so much more of it. But then again I’ve read eye gaze research that says autistic people look more at people’s mouths than their eyes, so maybe that skews the importance?
You’re only missing I’m assuming everybody understands what I’m on about. The thought behind it was carrying on from the human animal one, is that with animals bared teeth is a sign of aggression and I find other peoples teeth a bit scary sometimes. I wanted to ask a question about being fascinated with hair and it was the best I could come up with at the time. I should have split them in to two separate questions, sorry!
Oops missed this explanation, thank you for clarifying 🙂
So the separate questions would be “Do you find other people’s hair fascinating?” and “Do you find other people’s teeth scary or threatening sometimes?” – I wonder if that would generalise to “Do you find particular facial features either particularly fascinating or particularly unnerving in others?”
Yes, I’ll go with replacing my confusing question with your much clearer ones. I feel terrible for making you feel dim. I do look more at people’s mouths because I have trouble hearing what people say when there is background noise and I don’t want to be saying “What? Pardon?” all the time.
Yes, I have to have pointy objects directed away from me, but I have an obsessive mother. 😉 To that end, I also need drinking glasses to always be in reach, on level with and on the inside of the arm – not outside the forearm, because that’s how spills happen. Perhaps not an obsession in and of itself, but I find myself on serious edge when people don’t abide by that.
I like hair, teeth weird me out, but I used to love watching my mom talk because of the way her teeth and lips interacted. There was something odd about it, and yet not ugly, just fascinating; I wanted to pinpoint what it was. My son is an aspie as well, and he has to be the one to initiate haircuts (his own, I mean) or he can’t handle the change in the mirror. It’s disorienting to the point of panic for him to see such a radical change on himself. I, on the other hand, love changing my hair color between very bright shades, but I’m always the one to make the change, so that probably is the difference.
I like super long drapey earrings that tickle my neck, but I almost never wear any jewelry. I like having a nosering because it feels like it was always meant to be there. I took ten years contemplating it before getting it, and I’ve never regretted it. Finger rings bother me. My husband and I are getting tattoos instead of our wedding rings because neither of us like wearing one (though we’re committed til death to each other).
As far as being amazed that others don’t think of that, actually I was shocked that parkour existed. I thought I was the only one who thought that way, and here it is an NT thing!
I don’t wear any rings because I worry they’ll get stuck or fall off!
I have two grandsons who are autistic – son of daughter and son of son. As we’ve observed these cousins, we think that my husband, who passed away a year and a half ago, may have been undiagnosed all these years. Does that happen often?
Yes, there are many undiagnosed adults due to how autism was diagnosed 20-40 or more years ago and the lack of an Asperger’s diagnosis until the early 1990s. There is also a strong genetic link, so it’s common to see autistic family members across the generations.
More questions:
1 Once you knew you had Aspergers, did you try to date a neurotypical? How did that turn out?
2. What was the most helpful thing after you received your diagnosis? Why?
@ 2: The feeling of immense relief, almost joy, hence immediate acceptance.
Because …
… my deficit in standard NT social interactions suddenly became fairly normal. Less reason for -guiltiness- !
… I was not extra strange in an individual-isolated way but there were others. Many others. Company at last !
… belonging to a group (I love the word ‘tribe’ in this respect) happened at a time when I had almost given up private social life except for closest family and withdrawn into solitude.
… I immediately discovered the vast blogosphere built by so many fascinating, helpful and considerate people on the spectrum. No need to meet personally and still feeling connected.
Sorry for the trivial answer but that’s how it happened.
@ 1: may happen later under the new circumstances 🙂
Thanks for your response.
Poor question phrasing on my part.
What was the most helpful thing you did after you received your diagnosis? What happened?
I would like very much to have the experience you’ve had. But it hasn’t happened despite LOTS of reading of books, blogs, web-sites.
Of course it was -not- the phrasing of your question by me wandering off in the answer. What was the most helpful thing? Hmmmm. More something that was done to me. Maybe you will consider that equivalent at the end. Here goes the second try.
It started with the very first step of diagnosis. A woman at my work place noticed telltale signs in my behavior, and had the courage to out herself as an Aspie although knowing me for only for a few months by then. She asked if I ever had thought about being on the spectrum myself. Dumbfounded but curious. And dumb that it never had occurred to me until age 58. To recognize ‘Asperger’ in the Seventies and so on and so on, you know it all.
The subsequent ‘official’ things happened fairly rapidly due to the medical system in my country and a good pschyiatrist who had treated me on and off for major depression. After hearing my complete story that he had not known before I had my diagnosis pretty fast.
No, I’m not wandering off again. I hope. What happened next is that the great woman mentioned above stayed by my side and guided me through the next phases of stitching my fragmented biography together, relating to her own experiences whenever I had another puzzled question. I got first-hand advice from an affected and sympathetic person and not a well-meaning NT. Reading Tony Attwood and blogs came afterwards. She remaines the closest to a ‘new’ friend I made in many years.
So the most helpful thing -I- did was to let it happen. To take this unlikely chance, to -trust- somebody. As you know very well, accepting help is difficult for many of us and being a loner for many years did not make it easier. That’s the closest I can come up with like an answer. I am afraid it will not be useful for too many Aspies. But, on second thought … maybe …
Hi Ernest
Thank you for response (and for keeping the conversation going). You are my first meaningful interaction with a late diagnosed adult as opposed to someone diagnosed as a teen or child.
I understand your answer. It is what I have suspected — having supports really matters. It seems from books and blogs and videos that most Aspergians who are doing well have had a parent, spouse, or mentor to help them with this realisation (and long-term). A psychologist is great but 60 minutes a week isn’t exactly sufficient when you are, as you so elegantly put it, re-stitching your fragmented biography. Unfortunately, I have yet to find an adult with Aspergers despite asking for that very thing at various organizations that claim to support people with Aspergers — the closest I have been offered is someone 16 years younger who is looking for information about what supports are available once she leaves school — since I am an adult looking for supports too. I will keep looking.
thanks
Dear Katie,
I pondered for quite a while what I might say in addition since I assume to understand your situation. And sympathize. First, like you will have seen for yourself, the appreciation of psychiatrists and other health care specialist among people on the spectrum is, well, mixed, to use a rather friendly term. To specify the reference to a helpful psychiatrist in my previous comment: It was one out of seven I saw over the years. The others were shrinks in hindsight and no help. Oh, except for a brief encounter with the eighth, who put me on the medication that keeps me functional today.
So I am glad that you keep searching for somebody with a late diagnosis. Help from a spouse, sigh … So true but too late for me. My wife and I separated years ago. She could not tolerate my increasingly quirky behavior anymore. How she should have understood? So, a mentor definitely *is* the next best option. May I add once more that this blog (thank you, Cynthia) in particular has become very, very helpful to me? To quote for example (especially the last two point):
THE SENSEMAKING PROCESS
Shift in identity – identification as aspie/autistic
Retrospection – looking back at key life events in the context of this new identity
Building narrative accounts – retelling the story of your life in light of AS/autism
Sharing your narratives – strengthening and preserving your stories by sharing them with others
Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes
(from https://musingsofanaspie.com/2013/01/26/developing-a-sensemaking-narrative/ )
All the best wishes, Ernest
Last question, I swear. Does anyone else have really wide pupils for a long time (probably 20 minutes, at least, though I’ve never timed it) after waking up? My family’s always teased me, because I look drugged after getting up. No idea if this is an ASD thing or just a thing-thing.
Not as far as I know, but I have dark eyes and wide pupils would be less noticeable anyway.
Another one! For globe trotters.
Do you think some cultures/countries are worse live as an ASD person in?
Eg. The stereotype of Americans is of being loud so I imagine it would be worse if you’re quiet?
There have actually been several studies that looked not at autism but at shyness and social anxiety across different cultures. You’re absolutely right; America is one of the most difficult places for someone who isn’t outgoing or extroverted. In general Asian societies, where cooperation is valued over competition, were the friendliest to introverts and to socially reserved people. In Western cultures the Scandinavian countries were the most welcoming. Wonder if I’m too old to learn Swedish…
Hmm, I wonder how they measured that. I’m definitely an introvert and had a hard time when I lived in Japan, keeping up with group-related expectations, of which there were many.
The longest I have stayed in Japan for a continuous period is five weeks. Being a gaijin and a guest the first time i visited, I was unaware of the pressures to conform. On subsequent visits we stayed with my wife’s family and I soon became very aware of the narrow bounds of acceptable behaviour.
The strict social code is one aspect of Japanese life my wife doe NOT miss.
Luckily the Swedish are better at speaking English than the English;)
Oh, gosh, Yes! We have been to England and Scotland a few times. We are Americans, and we are somewhat shy and reserved for Americans. We feel very much out of place here in America. We don’t belong. While we were in Britain we often felt like we were loud and boisterous and flamboyant … or something. I wanted to tone-down my American-ness more than I already am. We loved the quieter reserve of the English. The Scots were warm and friendly, and we enjoyed their company the most. There was definitely a difference that we noticed.
I will second the warmth and friendliness of the Scots I’ve met. A few days in Glasgow and I felt like part of our new friends’ extended family. Also love my British friends, though I can’t say I’ve ever felt loud or boisterous anywhere. 🙂
I’ve been in Germany (Bavaria) on and off (never longer than a month), and it seemed wonderful to me, because it seemed–well, I think a lot of people would say dull. But to me that dullness (which drove some of my German friends up the wall) felt like stability, thoroughness, and reasonableness. I would love to visit again some day, even though I’m fairly sure I’m not sturdy enough to ever switch cultures and properly live in another country
Having had a taste of the country and knowing I will likely never get to know it better is a little nostalgia hole in my chest, sometimes.
“A nostalgia hole” is a great description, I think. By which I mean, it speaks to me.
Yeah, it’s one of those good/bad feelings. I read a quote once by Thomas Jefferson that hit home: “Traveling makes men wiser, but less happy. When men of sober age travel, they gather knowledge, which they may apply usefully for their country, but they are subject ever after to recollections mixed with regret—their affections are weakened by being extended over more objects, and they learn new habits which cannot be gratified when they return home. Young men who travel are exposed to all these inconveniences in a higher degree…”
I’m not sure I agree entirely, but it resonated.
Thank you for sharing that quote. I think the part about the thinning of one’s affections when spread to too many objects applies more to the way many people approach relationships, than to any experience I’ve had of travel. But it can certainly be hard to “return.” I used to travel yearly to a place, to participate in an event, and then one year I declined the chance, and it was like a scene in a movie: I’d exited a door, but as soon as I closed it, it disappeared into the contours of a wall.
Huh. That’s a very good way of describing how it feels, to lose that ‘tunnel’ to another place, whatever or whomever it is: a job, a person, a tradition…
Even by NZ standards, I’m quite reserved, and although I haven’t travelled extensively, I have noticed the NZers as a whole are a reserved lot. I definitely found the U.S. an intimidating place – everyone seems loud and opinionated. Australia is similar but less extreme. Japan, on the other hand, felt very comfortable. No one is “in your face”.
I recently I did an ocean cruise where there were 47 different nationalities among the passengers. It was quite obvious that some nationalities are more outgoing, while others were more reserved.
I also noticed that some groups were more curious than others about social and cultural differences. In this aspect, members of larger countries were generally less interested than those of smaller countries. Unfortunately, Americans, being the largest country represented, seemed to have the least curiosity and least acceptance of other cultures. I find that sad.
As an American myself, I find that sad, too, Barry. We’re not all like that! But you know that. E
It’s a generalisation of course. On the other hand, I know many non NZers who feel we are a dull and boring people. It goes both ways 🙂
Hey, I wanted to connect with you “offsite” and went to your blog but couldn’t find a way to click through to an email or direct connect. Am I missing something? (Hint: The answer is “yes.”)
Actually, you’re not missing anything. There is no direct way of contacting me via email. I may have to correct that if I can find a way that won’t encourage Spam. What you can do is make a comment on one of my blog postings or the About page. Each comment includes the writer’s email address so I can contact you via email.
Does anyone have “abnormal” seizures? I know that’s a weird question, but have you had the equivalent of LSD trips as seizure experiences? My sister (undiagnosed, but ridiculously obvious aspie) and I have had seizures that included cognizant, graduated, I-can’t-describe-it-any-other-way-than Disappearances of proprioception. It’s like my nerves shut down, slowly, and in order of outermost to innermost. Have you had vivid dreams during a seizure or in its aftermath? Or realized afterward that you knew what was happening in the adjacent room during the episode?
That description sounds very much like migraine without headache, which I can get several times per week. I’m not sure if there has been any research done into the co-morbidity of migraine and autism, but it wouldn’t surprise me if there was.
Here’s my questions, I hope it isn’t too late:
1. Do you see yourself as vulnerable because of ASD? Are you more likely to be persuaded to do something or taken advantage of than most other people might? Has your perception of this changed with age?
2. Do you have difficulty understanding non-verbal communication with humans, but have the ability to tune into animal nov-verbal communication really well?
3. 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?
4. For people diagnosed as an adult, do you have a changed perception of how others see you? for example how friendly/outgoing/confident you seem to them.
5. Do you find autism type difficulties getting worse with age? Do you think it is worsening difficulties, reduced coping, or increased awareness?
6. Do you have extreme discomfort from normal things eg hair (head or body), dry skin, sitting still?
7. When you are finding out about new ideas/cultures/ways of living, do you tend to want to “be it” rather than just find out about and accept it?
8. Do you think some of the appeal of a favourite subject/special interest is that immersion in a topic acts as priming making it easier and more comfortable to remember and think about it? Do you have trouble remembering facts on demand for other subjects you aren’t spending time on even though you know it and find it interesting?
And could we have one (or a bit of one) on peoples’ friendships and social lives? How many friends people have, how often they like to go out, do they prefer to do stuff alone etc. Do they find it difficult to motivate themselves to go out sometimes e.g. sometimes I struggle to go out to just buy milk up the road – not because I’m scared of it or too lazy, I just find it hard work. Like it involves a lot of effort even though it doesn’t. Do they talk a lot to people – a lot of books go on about how Aspies can talk the hind leg off a donkey about their pet topics (no pet donkey puns intended) but I don’t have the desire to really talk to people and I know what I enjoy doing wouldn’t be their cup of tea so I don’t bother trying. I just talk about it in my head instead.
Yes, I don’t talk to people about things I like because I like stuff nobody else does (which is often uncool as well) and I know I would bore them – I’m cured(!)! I do spend a lot of time thinking about my interests rather than say memorising DVD bar codes.
It would be kind of cool to have a question on peoples’ interests too. What they are and on what scale. I keep reading about how Aspies have ‘obsessive interests’ and while my interests are really interesting (for want of a better word) to me I wouldn’t necessarily describe them as obsessive because I’m not going to go into meltdown if someone rings me when I’m reading my favourite Enid Blyton or looking for more books on ancient history to buy even though I have a lot and haven’t read them yet (but I’ll admit looking at them on the shelves gets me excited). I might be a tad peeved at being interrupted, I might even carry on browsing Amazon while pretending to listen on the phone (okay it’s pretty much guaranteed), but I couldn’t describe it as an obsession. (Though if anyone is interested my favourite Famous Five is no. 3 – and I can almost taste the sausage rolls they get from the bakers!)
I vaguely touched on that in one of my questions because I don’t think I obsess in the “correct” aspie way and I have read a commenter on here say they were told they couldn’t be an Aspie because they don’t have a collection! I don’t either, if I like a TV show I’m happy with the DVD’s and the odd book & autograph, but I don’t have or feel the need for figurines/posters/props/keyrings etc.
I wonder if what psychiatrists/therapists don’t understand is that *everything* in an ASD person’s life can be part of their ‘collection’? I feel like I very actively ‘curate’ my life. Everything I own, read, watch, play, and do is factored into a network. If there’s a part of my life or my belongings that doesn’t fit into that pattern/network, I usually try to change it or get rid of it (for instance, when I started thinking about racism and sexism, I got rid of a lot of my books and films). And I have a hard time with ‘hypocrisy’ in others’ ‘collections’ (for instance, if someone is big into feminism, verbally, but devoted to a clearly-sexist show, author, etc.); it makes me feel confused and lost, in talking with them. I have a hard time not coming back around and around to what I see as an illogical inconsistency that the person ‘should’ want to ‘fix.’
That’s a really interesting point. I hadn’t realised quite how much the different parts of my life interact around themes. I love learning and I love ancient history (Greeks and Romans in particular). So I’ve got lost of books on the subject, and dvds, (not just non-fiction or factual but fiction too), and I’m starting another Master’s degree on Classical Studies which ties the learning & classics together. But also I daydream a lot and recently there’s been a classics theme in the daydreams too. Only a strand but it’s there nonetheless. And on another theme I’m into sort of being environmentally-friendly – part of that means that I’m switching my pets onto food that’s better for them and more natural, and trying to eat organic and home-made myself, and growing vegetables (and that’s in my daydreams too!). Like you it’s factoring things into patterns.
(I’m beginning to think that my daydreams are reflecting all the things most important to me)
I get confused – and upset! – about such inconsistencies, too! And when it comes to sexism, they are RAMPANT. So hard to explain to others, and so much seems to depend on other people understanding. Sometimes I find contemporary/pop culture unbearable.
I don’t collect things on the scale that I did when I was younger but I’m serious collector of knowledge, facts, etc. I think I’ve also become more of a doer than a collector when it comes to special interests.
Oh gosh… That last one. I do that.
That was meant as a reply to Liz.
Cool 🙂
I’d like to throw in a maybe more private question:
Does arousal influence you in an autism-specific way? As in: Do you overload easily when aroused? Does arousal influence, for example, your verbal reasoning skills than you feel would be “normal”? Do you stim when aroused?
Oh, and not so private, though still a bit – the effect of alcohol on EF in other autistic persons is something I would find very interesting, because my verbal reasoning skills seem to be influenced in the most funny ways when tipsy. My stimming changes a lot, too.
I thought of a question! I would like to know if people have jobs or volunteer things they do that they are particularly suited to because of their autism. It could be the job/volunteer thing as a whole, or a certain part of it.
Also, the book arrived yesterday, thank you!
You’re welcome!
IF we ever have another round of these I have a slew of medical/ dental questions:
Do you have more dental issues (particularly fast tooth decay even though you take care of your teeth, bleeding gums, absences or more root canals) than your peers?
Do your autistic children have more dental issues?
Do cleanings hurt you more than fillings?
Does the anthestic or freezing cause more pain after than not having it for fillings that do not involve the roots?
Do you have unusual reactions to the freezing agents?
Do you find you act more or less autistic at the Dentists?
DO you prefer to disclose or leave out your diagnosis at the Dentists?
Is there any trick that helps you get through the appointments?
Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?
Do you have a code word or phrase that helps you the most during emerg appointments?
How do you manage sensory issues at the doctors?
Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves ( e.g. colonoscopy, mammogram, gastroscopy.)
Do you have unusual side effects to anesthetics…if so explain?
Do you find you are prone to anemia or low iron?
Do normal pain killers have the opposite effect on you?
Does naturopathy generally accept you and address your issues better than allopathy?
Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety ect. and need alternatives? What would you suggest to a doctor if you could in this regard?
Anyway, sorry that was a lot. I am over ridden with curiosity…
No problems with the psychological side of it here whatsoever. Bad teeth, though, therefore lots of treatments, including surgery. More stressed out by doing three telephone calls in a row. Or surprise vistiors (uuugghh, horror).
I hate phone calls. And I really hate surprise visitors. People who know me know better than to just turn up. Anyone else & I don’t guarantee to answer the door. And I don’t answer the phone unless I know who it is.
I have a lovely calm dentist but she’s off on maternity leave and I had to see someone else as my crown fell off – a nice bloke but when he told me what my options were he rattled through them and my brain was just spinning. I just went with the one that meant it was all done there and then! I stim a lot in the waiting area – that was where I noticed it 🙂
I was hitting ‘post comment’ too quickly, again (not only ‘vistiors’ instead of ‘visitors’ above
). In fact, I do have a dentistry problem. My decade long dentist, also a friendly neighbor by chance, retired three years ago. So far I have not been able to find a new one, still in the data collection phase. Without going into details I would really need one by now. So, no anxiety about the treatment itself but classical inability in decision making …
Love your handling of phone calls and and ringing door bells 😉
These are all great questions. I will add another survey to include them! 🙂
Picking up another of your questions, regarding anemia. Incidentally, I am a scientist specializing in the formation of red blood cells and iron metabolism. Looking up the scientific literature, I could not come up with any connection between ASD and anemia.
On the other hand, it is a frequently overlooked fact, that women are much more prone to iron-deficiency anemia than men and generally have a lower number of red blood cells (commenting on that since the majority of posters here are women). Surprisingly, nobody so far can give a firm reason why. We worked on that in my lab for a while, there may be a connection to androgen levels. Yes, this ‘male’ hormone is present in females, too.
In case you want to look up the numbers, there is a link demonstrating these differences between men and women: http://www.cdc.gov/mmwr/preview/mmwrhtml/00051880.htm
Sorry for the awful formatting, it is a preview report. Scroll down to the very end and have a look at the tables, especially numbers 1, 4, 5, and 6.
Thank you for sharing this info – really interesting!
will check it out…I realize there is no research with Autism and Anemia but every autistic I know ( including males and my son) are anemic…Just wondering if there was more of a connection or not…
Perfectly possible, it can be that nobody looked so far. In my own values, over the years there is a tendency to be on the lower end of ‘normal’. Hmmmm …
I’m a mother of a 5 month old and some recent events have gotten me to look into certain issues I have socially and when I looked up my ‘issues’ it directed me to some aspergers websites. Also after talking to my mother just last night about it, we talked about in high school I was suspected of having aspergers but they shot it down because I have a tendency to be very social but the doctor had diagnosed me with
ADD (ADHD without the hyper)
OCD
Anxiety disorder
Bipolar (From years of reading about it I’m quite sure its not the right diagnosis and I’ve had a few doctors agree but because of who diagnosed me they didn’t want to challenge it)
I”ve always thought I might have dyslexia and from a few online tests it looks like I might have dyslexia and Dyspraxia.
Now seriously looking into aspergers.
As far as my social interactions I have a lot of trouble lying (nearly impossible and the few times that i have had to in my life I physically became ill until I admited to the people I lied to.
I am american and I’m living in australia with my australian boyfriend. We had a baby 5 months ago and from a month before our baby was born and up until a few months ago we were living with his step mother and father. His step mother works at a bank and helped us get a loan (using some methods that I recently found out weren’t up to par.)
She kept insisting we pay more rent and almost in the same breath would mention the fact we redrew on the loan a few times and how my boyfriend is lucky she hasn’t told his father. (It really bothered me because I understand it really isn’t her business. Anyways when our baby was nearly 3 months old, my boyfriend stuck up for us, and I backed him up. It resulted in her saying, “If you don’t like it, there’s the door.” I took it very literally and grabbed some of our baby’s things and left. I took it as she kicked us out and later on we found out we couldn’t go back without apologizing (sincerely). My boyfriend was even threatened by his dad! Threatened to bash him up if we went to get our stuff without him being there and he really didn’t want the cops involved. They took all the baby stuff that they had given us and even took things that my mother and my boyfriends other family members had sent.
When I get stressed and situations like these come up, when asked how I’m doing I can’t help but start from the beginning and tell the whole story and if i’m doing good that day, I end up saying something like: Doing a lot better than I was… and then I proceed to tell the whole story (even if its the 4th time they’ve heard it.
now boyfriend’s father who wants nothing to do with him has called him up the other night threatening to sue us if I continue to “spread lies” because its defamation or something.
I’ve been told I need to let it go about the legal stuff about his step mother because it will cause more drama with the family, but I can’t let it go and not report it because it feels like I’m lying if I don’t do it.
So I guess that’s two things I need to ask:
If you feel something isn’t right, are you able to let it go? Do you think I should? If I do, I’m told it will cause his whole family to be in an uproar and upset with me—but I don’t understand why. We didn’t do anything wrong.
And if your stressed out do you end up telling your whole life story over and over when someone asks you how you are doing and find you can’t stop?
I know I’m not spreading lies—If I were doing that I’d already be in the hospital (I get so upset and stressed over a white lie I can end up throwing up) and my boyfriend has been there when I’ve repeated the story (he tries to nudge me to remind me I’m saying too much but I can’t stop talking until everything has been said.
I think perhaps it is the OCD and the anxiety that perhaps makes you compelled to tell the story over and over once you stop…But I also think that perhaps you need to put more boundaries in your life. A book that would help you is Necessary Endings by henry Cloud and then another book on loving yourself, your story and your boundaries would be The Gifts of Imperfection by Brene Brown…they are steps in right directions…esp Brene Brown…she explains that there are only a few people who deserve to hear your whole story but that it matters to tell someone. Also a neutral therapist may help you. Good luck
I know this is very late but I have another question that’s been rattling round my head for a few weeks and only just solidified enough to write here:
I’m having some post diagnosis follow up with the clinician who diagnosed my aspergers and in one session she asked if I thought I was introverted or extroverted. I always assumed extroverted meant socially adept and loving parties and introverted meant liking peace and solitude and being bad at socialising. She explained it as where you get your energy, so extroverts gain energy from others and introverts gain energy from being alone, and that autistic people can be either or anywhere in between. She also said there are challenges for extrovert autistics because of the social difficulties making it hard to achieve needed social interaction. After consideration I think I am somewhere in the middle. I need a lot of time alone to recharge and feel balanced, but I also get a bit of a lift from (positive) social interactions that don’t last too long. People tend to think I’m very introverted, I’m beginning to learn I don’t give out the social signal that says I’m interested in talking/participating.
Thinking about it in these terms, where would you place yourself on a continuum from introvert to extrovert? Is this different from how you would think of yourself using the terms in a broader sense, and is this different from how others see you?
There was still room for another question in the “social interaction” survey so I included it there. I had to condense your explanation a little but will include a link to this comment for those who need more details.
Bugger – posted it on the wrong page!!
Would you like me to delete it for you? I saw you posted it on the survey page.
Yes please! I had both pages open while I was typing it in Word and then copied it to the wrong one first!!! Thank you 🙂
Done!
(Assuming you read fiction that has autistic characters, either canon or headcanon) What do you look for in an autistic character?