Survey: General Coping Strategies

Welcome to week 3 of our survey.

I’ve slightly revised the schedule due to some additional questions that were posted over the weekend. This week we’ll do general coping strategies. Next week we’ll do special skills and fun stuff. When I get back from my great big adventure some time in May, we’ll do acceptance and gender/sexuality/body image.

You all probably know the drill by now, but in case anyone new wanders in: answer as many questions as you like, here or anonymously at Survey Monkey. Talk amongst yourselves about the answers if you like.

Also, you might want to have a look at the last two weeks’ surveys on relationships and sensory sensitivities/work and school strategies. Answers to both are still coming in!

Take the Survey Monkey version here: general coping strategies.

Although some questions reference diagnosis, this is open to all those who identify as on the spectrum (professionally diagnosed, self-diagnosed  and suspected aspies/autistics/people with autism).

General Coping Strategies

  1. What positive changes did you make to your life after your diagnosis?

  1. Over-apologising/apologising as a reflex action: Seriously, “sorry” has become my standard greeting to people at uni. Does anyone else do this? Has anyone managed to break the habit? How?

  1. How do you all describe what it’s like to be you to someone else? What do you compare these things to in a way that makes others have that aha! moment? more details here

  1. Does anyone else have issues with conflict/arguments/shouting matches in front of you? How do you deal with this?

  1. Does anyone else have trouble with “future planning”? a little more info here

  1. How do you stay on top of cleaning? What contextual cues do you use to get you to do things around the house?

  1. Do you catastrophise and if so, have you strategies for managing it?

  1. Do you experience emotional distress, such as depression and grieving, in unusual ways, such as increased sensory challenges or physical pain?

  1. Do you have trouble speaking at a normal pace? Do you have any tips for modulating your voice?

  2. Have you experienced chronic fatigue or chronic pain? Do you have other chronic illnesses? If so, do you think autistic traits such as poor emotional awareness and sensory differences such as oversensitivity to pain or muscle discomfort have any effect on these?

80 thoughts on “Survey: General Coping Strategies”

  1. Is it bad that I woke up this morning and thought “It’s Tuesday, survey time, YAY!”? Anyway:
    1.) I was diagnosed young, so I don’t think I can really answer this one.
    2.) That was my question, so yeah, I do that all the time. Seriously, it’s getting out of hand. 😄
    3.) To be honest, I’m not very good at this. I just reel off all the positives and negatives, with a few anecdotal examples where relevant.
    4.) Also my question. Answers on a postcard please!!!
    5.) YES. When I was doing my GCSEs I was really scared about Sixth Form; when I was in Sixth Form I was absolutely terrified about university; now I’m at university and I can’t imagine this year abroad I’m meant to be doing in a couple of years. I really don’t deal with The Big Scary Future very well!!
    6.) I tend to stick to a routine, e.g. I’ll do certain things on specific days of the week, or at least roughly once a week/fortnight/every other day/etc.
    7.) I can relate to this to a certain extent. I probably just stim a lot. 😛
    8.) Anger can be physical pain sometimes. Nothing TOO bad, though.
    9.) YES! I speak too loudly and too quickly. Sometimes I’ll realise this mid-sentence and can modulate from there. Other than that, I have no idea how to deal with this!
    10.) Nope.

  2. Anonymous answers:

    Q4: Oh yes! Major issues – that’s one of my primary triggers for overloading and leads very quickly to shutdown or meltdown. I get the heck out of there as quickly as I can – all I can do is avoid the situation.

    Q5: I can’t do it at all – I have a deeply ingrained tendency to assume that things will continue as they are at present. I have never had any concept of a career path, or what I’ll be doing this time next year. I remember that when I was going through school I never had any thoughts about where my studies might take me and just drifted along following my academic interests. It causes me problems because when circumstances _do_ change I’m not prepared and don’t handle it well. On the other hand when I make plans and they get disrupted that also causes me problems, so I find myself reluctant to plan anything in detail in case the details have to change.

    Q6: I don’t. I tend not to notice the accumulation of dirt until I’m brushing a quarter inch of dust off the top of a book or something that I’ve not picked up in months. This understandably drives my NT wife nuts. There are some small cleaning tasks that I have successfully incorporated into my routines such as rinsing the shower cubicle after using it but on the whole I rely on my wife to tell me when things need doing.

    Q7: An unfamiliar term – assuming it means “imagine the worst outcome” I’d have to say I don’t do it. I tend towards mild optimism in general.

    Q8: My thresholds for comfortable levels of sensory input are reduced by depression.

    Q9: Growing up I used to talk very quickly but I seem to have learned to pace my words better as I’ve got older – I don’t know how it happened because it wasn’t a conscious thing.

  3. anonymous answers:

    Q1: I have better understanding of what causes my volcano moments and have been reading and basically I feel empowered

    Q2: No

    Q3: I describe how I see movies in my head. How literal my thought process is. How I can remember the small details from long ago. How it means to juat need to decompreas

    Q4: No

    Q5: Don’t bother with it

    Q6: I have ocd

    Q7: Yes drama and then meltdown and I am trying

    Q8: It tires me out and i need at least 2 days to recover. I have had depression ans when it looms I identify as symptoms of a cold and talk myself through it so not to free fall

    Q9: I can sense when I talk fast. Speed depends on my listener. My partner is a slow speaker so I purposely decrease speed

    Q10: No

  4. my answers:

    Q1: I started a blog! I tell my daughter that I love her. I’m nicer to myself. I no longer ask my husband the same question ten times in an evening (mostly). I’ve learned how to be more physically affectionate in ways that work for me. I try to be less rigid and see other people’s points of view. I’m more aware of my sensory limits and give myself permission to say no to things or leave a situation without feeling guilty. I make less effort to socialize and am happier for it.

    Q2: I tend apologize when I don’t need to but don’t apologize when I should because I’m so bad at reading other people’s cues. So I guess I don’t have a good answer here except maybe to try scripting some other greeting or neutral responses and consciously practice?

    Q3: I use a lot of analogies. Sometimes it takes a few tries to come up an analogy that clicks with the other person. I’ve tried straight up describing things but that mostly gets me blank looks in response.

    Q4: Oh yeah! Even arguments between complete strangers will trigger me. I used to feel like I had to tough it out, but now I leave as soon as I become aware of the conflict. If I can’t leave entirely, I’ll go in another (a bathroom works well) or put on headphones to drown out the sound.

    Q5: Somewhat. I have trouble visualizing future plans in my head. I need to write things out–make a timeline, lists of things I need to do, schedules. But that only works if I have a definite goal, like “I’m moving on X day so here are all the things I need to do in advance and when they need to be done by.” If by future planning you mean, this is where I see myself in 5 years, I have no idea how people do that. The possibilities are too great for me to think about in a meaningful way.

    Q6: Looking around and noticing that I seem to be living in a frat house is a big contextual clue for me. As are doggie hair balls floating around on the floor or three meals worth of dishes in the sink. So I guess my biggest contextual clue is a problem that I can no longer ignore. My husband is really really good at doing whatever obviously needs to be done without complaint or comment. If he takes out the vacuum, I use that a cue to clean the kitchen and/or bathroom, so that’s a good motivator.
    I also need visual/audible reminders to do household things where there’s a time gap between steps. I leave the laundry room light on to remind to move the clothes from the washer to the dryer and set an alarm on my phone if I have something cooking that needs to be checked on.

    Q7: Sometimes, generally it happens in situations where I have a lot of time to think about something, I don’t have enough information or something is completely beyond my control. I’ve found that rationalizing helps: writing out pros/cons, thinking about the realistic odds or outcome of the worst case scenario, asking other people for help/reassurance/more information, brainstorming possible neutral/positive reasons for a situation that I might not be thinking of (if I’m focused on the
    negative).

    Q8: Depression flattens me out and confuses me. My executive function goes completely haywire and I’ll need someone else to point out that I’m depressed because I usually don’t recognize it, especially if it’s an extended period of depression. My experiences with mourning so far have been very detached, which is abnormal in a different way that this question is asking about.

    Q9: Yes, pace and volume are often a problem. I’ve been told that I speak really fast, especially when I’m exciting. I also tend to speak too loudly when I’m excited and too softly when I’m uncertain. The up shot is I get asked to repeat myself all the damn time. I’m trying to consciously modulate my voice, especially when speaking with strangers, but it seems like I can’t always tell what an appropriate volume/pace it.

    Q10: No, though I’ve noticed that with the recent arrival of perimenopause I fatigue much more easily and have days where I feel abnormally tired for no good reason. Not sure if this related to sensory/emotional differences or hormones or some combination of the two.

    1. God, I love this thread. I keep reading and reading and saying, “I’m not alone. There are others who have the same struggles.” Sometimes I feel so clueless about people’s cues, so literal, so scared to be myself because I’m afraid I will put people off. It’s such a relief to know there are others who share the same difficulties, and we’re not bad people, just different and confused by a world that seems to assume that we function the same as everyone else out there.

  5. 1) I started writing again, which I hadn’t done in 15 years. I also have become more compassionate towards myself.
    2) I am a very instinctive apologizer. Whenever I sense what I believe to be anger or discomfort in others I usually assume I was the cause of it.
    3) I have never described what it is like to be myself to anyone else. I don’t know how to do that.
    4) I have a serious issue with people fighting in front of me. It causes me tons of anxiety. I tell people to shut it.
    5) Whats the future? 🙂
    6) I gauge time to clean by how embarrassed I would be if someone saw it.
    7) I always catastrophise. It is one of my biggest weaknesses. I assume disaster lurks at every corner. I cope with meditation.
    8) I experience increased sensitivity when I am depressed, also a headache.
    9) I speak way too quickly, and can be too loud at times. I just try to be conscious of it and slow down.
    10) I have mental fatigue nightly pretty much, I am not able to enjoy much after a rough day even if its not time for sleep. I have a chronic injury to my leg which my sensitivity to pain has not helped at all.

  6. 1. Self-diagnosed. Been more aware of my behaviors and actions. I used to believe I didn’t have echolalia, but that’s not true at all; somehow, I’ve adapted by incorporating it into everyday conversation.
    2. I used to say sorry a lot! I broke the habit by seeing what would happen if I didn’t say sorry in some cases (ex. bumping into people in a crowded street is inevitable) and observe what other people did vs. what I did. In other cases, I’d really think about where I’d say sorry and evaluate if it was necessary. I read up on setting boundaries and learning what “sorry” even means.
    3. Weird and geeky for me. It seems like being a “geek” (complete with the nerdy glasses!) is more widely accepted these days.
    4. Yes. I used to hide in a quieter area. If I was one of the parties in a conflict, I’d ask for some time off to think after awhile (especially if we weren’t resolving anything) and that we can resume the conflict later.
    5. Future planning? I’m not sure what this means. However, if I’m in a new situation or if something changes all of my plans, I will obsess over all the details. Like computer programming for my brain.
    6. I plan to clean in a way similar to #5: by obsessing over it periodically. Once a month, clean the bedsheets. Weekly, do the laundry. Every day, do the dishes.
    7. I used to catastrophise a lot. Now it only happens when I can’t read someone but what they’re saying sounds catastrophic enough to me. I try to breathe first, and go through the problem solving method: analyze the problem, find ways to solve it, pick an option, and use it.
    8. Well, I’ll watch a sad scene and still feel really awful about it (sobbing included) long after the scene is over. I think I even think about it too much, like I’m trying to analyze what I’m feeling and why but coming up with nothing. No sensory challenges or physical pain, though.
    9. To me, this is similar to music. I watch for the tone, volume, and rhythm of what other people are saying, and imitate it when I have a chance (usually in a quiet spot, so no one is around to think you’re crazy).
    10. Not the kind of fatigue a medical practitioner would think of, but I’m definitely tired all the time. The only times I’ve managed to be awake were actually when I was jetlagged. I was feeling enthusiastic about life and talking more. When I got out of the jetlag, I went back to being tired again.

  7. anonymous answers:

    Q1: In the diagnosis process right now. Hopefully, I’ll learn how to better manage my stress level and sensory stuff

    Q2: Ahahahaha. Is the person who asked this question me? (except I didn’t ask any questions, so I suppose a better phrasing would be “Is the person who asked this question my double?”)

    To the point that people have told me to stop apologizing for existing. I haven’t managed to break the habit, though to be fair, I haven’t really tried, but yeah. “Sorry to bug you,” is my scripted “I need something that will mildly inconvenience you,” opener. “Sorry!” is my “awkward bump into the hall” script, etc.

    Q3: I compare social stuff to culture shock, but that only works for those who’ve traveled. The rest of it… well, I’m only just realizing that most people don’t see sound or deal with my other sensory stuff, so I haven’t figured out good analogies for it yet.

    Q4: I leave.

    My parents have a less than functional relationship, and to not leave was to be roped in and have everything I say be wrong and held against me and used as ammunition forever. So I leave. If I can’t, I kind of huddle in a corner and avoid eye contact or talking in hopes I won’t be noticed.

    Q5: Yes, in that contemplating major life changes (like graduation, getting a new job, etc) fills me with anxiety so I can only work on it for about ten or fifteen minutes at a time and I procrastinate it like mad.

    Q6: I’m shite at cleaning. Scheduling laundry seems to work – and putting dirty stuff in a different room entirely from clean. My solution to folding/putting away laundry was to just put everything in baskets. It works better than using a dresser. I got a dishwasher and only buy dishwasher-safe pots, pans, etc, which works pretty well. My partner handles clutter and floors, which are both jobs that just do not compute.

    Q7: Yes, and usually, I end up in a meltdown. Have my meltdown, then once I’ve calmed down, I can deal.

    So, no strategy, basically. I just kind of explode and then pick up the pieces afterwards.

    Q8: Yes. Emotional hurt is sore throat and eyes, for example. I think I’m pretty typical for depression and grieving, but if I’m atypical, I likely wouldn’t notice as I’m not functioning the best anyway.

    Q9: Pace if I’m excited (too fast) or upset (stutter). Pitch if I’m excited (too high) or otherwise dramatically emotional, volume if I’m not concentrating on it (usually too quiet, unless I’m excited, in which case, too loud).

    Tips: Speaking from the diaphragm seems to help with the volume stuff when I remember to do it. Pitch and pace, no.

    Q10: No to chronic fatigue and pain. Yes to chronic illness: Moderate asthma and environmental allergies. I’m either hyper- or hyposensitive to my airway tightness depending on my mood, which can be very useful on hypersensitive days and dangerous on hyposensitive ones.

    1. Oh, I’m so sorry to hear that. The only posts that come to mind are two by Gareeth (who I believe identifies as classically autistic, but don’t quote me on that)

      There was another I would love to point you to at Unstrange Mind but she deleted her blog recently. 😦

      I’m going to invite others to post either links or thoughts here and hope you get some more replies.

    2. Sorry to hear that Catherine. I don’t know if this will help at all but here’s my own experience of losing somebody close. My mother died a couple years ago. My dad phoned and told me and I remember not feeling anything at that point. I went out for a long walk because I wanted to be alone to think about her and then just got on with my normal routines. One of the hardest things to deal with was people approaching me to offer their condolences – I’m not comfortable in social situations especially when there is high emotional content and I would have preferred it had they not spoken to me. I went to the funeral and still hadn’t felt any stirrings of grief; that came months later and I don’t believe there were any triggers. I wrote about her because I find writing helps me recognize and organize my feelings and _that_ had me in tears a couple of times. I have found more than anything else that I miss her – I don’t know how similar this feels to “classic” grief – and every now and again the feelings will come over me. At those times what helps me is to spend time on my own, perhaps going for a walk in the countryside away from people, and just work through my thoughts and feelings without distractions.

      I never went through any phases of shock (she had been terminally ill for a while so it was not unexpected), denial or anger, but that is not unusual: I accepted the loss from the start. The important thing to realize is that there are no right or wrong ways to grieve; you have to follow the way your feelings and instincts lead and not be made to feel that you should be reacting in any particular way based on others’ expectations.

    3. I’m sorry to hear about your sister. That must be tough to deal with.

      I don’t deal with grief the same way other people do, I’m afraid. I remember when my mom told me that my dad had died – he had been suffering from cancer and died in our house. My initial reaction was to smile. Now, I adored my dad, and I’ve missed him since the day he died (I was nine, and I’m 55 now), and I can’t tell you why I smiled, but I did. I felt absolutely nothing when my stepfather died a couple of years ago. There have been other deaths in my life, and I’ve “under-reacted” to each one. I feel kind of badly about that.

      I guess I tend to go all flat or weird, and then I’ll grieve later. I’m afraid that’s not much help, but perhaps knowing that Aspies may react in unexpected ways will be of some help to you. I do feel deeply saddened by someone’s death, but I can’t seem to express it well, so I’ve learned to say, “I’m sorry for your loss.” That, at least, seems to convey to people that I care and gives me a way to connect with them in an appropriate way. I’m a good listener for people who are grieving, I just can’t seem to express grief myself unless I have a complete meltdown.

  8. anonymous answers:

    Q1: I wish I could say I’d been able to fix more since I’ve figured out what’s ‘wrong’ with me.

    Q2: I’ve come to realize that after decades of not knowing what’s wrong with me, I’ve just always assumed that whenever anything goes wrong, it must be my fault, and I have to work harder to not be that way. Still working on changing that.

    Q3: I’ve been explaining it to a few close people for a few years now. It’s not easy to get people to start to get it–maybe because I have so many co-morbid problems.

    Q4: No, generally they’re shouting *at* me. 😦 I leave the room or ignore it if people are upset.

    Q5: Not me, not really.

    Q6: Lists. And you’re assuming that I keep on top of it. lol Flylady.net is great.

    Q7: Deep breaths. lol I think perspective is something I’ve learned as I’ve gotten older.

    Q8: No.

    Q9: When I was younger I spoke faster and higher-pitched. I’ve changed that on purpose over the years.

    Q10: I don’t know, having never not been autistic, but I have a primary immune deficiency (similar to ‘boy-in-the-bubble’ disease), and severe asthma that doesn’t respond to medication.

  9. disclaimer: I’m neurovariant, but not on the autistic spectrum, just somewhere near it with a lot of overlapping traits.

    2) over-apologising: I used to do this all the time, and I’d catch myself doing it and then i’d be apologising for apologising because i knew how annoying it was and then i’d get stuck in a loop, apologising for not being able to stop apologising for apologising for whatever inconsequential thing i’d done. i haven’t done it recently, but i haven’t spoken out loud recently either (I don’t go out much). One thing that helped is when i catch myself doing it, i stop talking, take a few breaths, and don’t talk until i can think of something to say that isn’t “sorry”. if people around me press or me or seem concerned, i try to say “I’m caught in a loop and am trying to say something other than sorry.”

    4) shouting matches in front of me: i tend to cower and wait for it to stop.

    6 cleaning) this was my question. some things i use: i use a bucket to flush my toilet. when the bucket is empty, i put in the bathtub (where the washing machine drains into) and put the washing machine’s hose into the bucket. then i do a load of laundry.

    if i walk past the cats’ food bowl or water bowl, i check to make sure they’re full. i also check if they approach me and meow.

    the apartment i live in has a horrible carpet with a bad texture and it collects dirt and resists vacuuming. i keep it covered with some sheets i got second hand. i keep track of what day each sheet was changed last and when i’m feeling up to it i change the one that’s been down the longest (unless it’s been down less than a week).

    i have a little computer program i wrote (that isn’t portable yet, but someday i’ll make it so it will run on other people’s computers!) that takes a list of tasks, stores what pain level i can do each task at, stores whether it’s something i can only do at certain times of the day (for example: no vacuuming at 3am), stores whether i find the task overloading or not, and then only gives me one task at a time based the constraints i’ve set. when i do a task, i can hide it so it won’t tell me to do it again for a week, or a month, or 18 minutes, or whatever.

    i have a rule that i’m not allowed to leave the kitchen just because i’m waiting for [water to boil, the cookies to be come out of the oven, etc.] I don’t have to do anything while i’m waiting. i can stare at the walls if i want. but i have to stay in the kitchen. usually, i get bored of staring at the walls and wash the dishes and throw garbage away and clean the counters. I am allowed to leave the kitchen if it’s going to be a long wait, for example waiting for dough to rise can take an hour or so.

    9) voice modulation: I speak too slowly and my voice sounds very childlike even though I’m an adult. I also speak too quietly. this was my question and i really want to learn to speak a little faster, louder, and with a grown up sounding voice

      1. It’s written in PHP/html, so it just needs a few things to be useful to other people: right now, everything is centred around me and my limitations, so you can’t do laundry if your pain level is above 5, and you can’t go grocery shopping unless you’re below 3. But someone else might not be able to do laundry at a pain level of 2 but could do grocery shopping at a 7. So that’s something I need to fix. You can add new tasks, though (it comes with a set of default tasks that I thought might be generally useful). Then, I would need to upload it to a server online somewhere. Basic use would be free (with tip jar), but if you want to add more than, say 20-30 tasks (above the default ones), I’d charge for that (you pay what you think is fair, I manually go into the database and raise your limits).

        It can be used even without an account, (but then you can’t add tasks and can only use the default tasks).

        You can also hide constraints that aren’t relevant to you, for example if you don’t have chronic pain, you can hide the pain scale thing.

        The layout is really clean and simple. White page, giant font, just a few words to read, like “Make your bed” with a little picture I drew in case you don’t speak English or you aren’t processing language so well today. It should work fine on a mobile phone with internet access.

        1. It sounds very useful and practical. I think that in addition to or perhaps instead of chronic pain, a lot of autistic users would find it helpful to rate tasks on the amount of energy required. For example, I need a lot of mental reserves to make certain kinds of phone calls, a lot less to do laundry and a middling amount to go grocery shopping. Just a thought if you ever decide to “go commercial” with it. 🙂

      2. I agree. I think you could use the pain scale for that. Just because it says “pain” doesn’t mean it has to be physical pain, it could be “spoons” or “mental reserves” or whatever makes sense to you. But I know some people on the autistic spectrum might not realise they could use the pain scale for something other than pain. Maybe it would help to let people rename it, or to explain on the help page that it can be used for other things instead.

        I find the program helps me the most with looking at a messy room and not even knowing where to begin. it tells me “wash dishes” and out of nowhere i am suddenly able to see all the plates and cups on my computer desk that were invisible to me before, so i grab as many as i can carry and go wash them for a while.

        Or it tells me “Sweep the floor”, so I go into the hallway and get out the broom and notice there’s a lot of stuff in the way, so I set a timer, and find homes for as much of it as i can, and then i do some sweeping. whereas i walk into that hallway a bunch of times a day and it wouldn’t occur to me on my own to pick those things up or to attack the dusty floor with a broom.

        without the program, i can see that it’s messy, but i don’t really know what to do about it.

        1. The pain scale could definitely just be renamed, but I think you’re right that some users might not instinctively adopt the pain scale for another purpose. Having that as an option would be great.

          What you say about needing a prompt to make you look more closely at what needs to be done is so true. I find that once I get going, I can get a lot done, but the getting started is tough.

          If you decide to do this, let me know and I’d be happy to review/promote it here.

      3. I’ve made the changes so that when you make a new account, the default tasks are copied into your account with the default settings, but you edit them to fit your situation better (changing the pain scale value, renaming them, uploading a new picture if you don’t like the one i drew for the task), or delete them if they don’t apply to you at all. I now have a website, but I haven’t uploaded it yet. I will upload it when I have time.

        For now, I just have a note on the help page which explains that pain doesn’t have to be pain, it can be something else that makes more sense to you. Later, when I have time, I’ll make it so you can rename the different constraints. But I want to upload it so other people can use it first. So, sometime in the next few weeks!

        My goal is for the site to be useful to anybody, whether they are able bodied or disabled, and for it to be useful to people with a wide variety of disabilities, and I’d really value feedback on how well it works as a system for “people who are not me”.

        one thing it is not so good at is reminders for something you have to do every monday, or a reminder to go to the dentist at 3pm on wednesday, because it chooses a task at random from the tasks you don’t have hidden, but there are tons of programs out there that will remind you to do something at a specific time on a specific day, and there aren’t any programs that do what mine does: pick a random task from a list of stuff you need to do semi-regularly (but it doesn’t really matter if you’re a day late doing them). So still use your calendar on your phone to remember your friend’s birthday, and use my program to help you figure out what to do first when you notice your room is a mess but don’t know what to do about it.

        You can also make a category “board games” and put all the games you have in it and use my program to pick a random game that 3 people can play (so it won’t pick chess, but it might pick Clue).

        I’ve been thinking of making a category “tea” because I like all my teas and I don’t know which one I want to drink… 🙂

        1. This is exciting!

          I agree that there are plenty of scheduling and calendar type programs. Your idea is completely different from those and I think will be uniquely helpful to people on the spectrum. The decision making aspect of it makes it a sort of executive function support, it seems.

          Your description of the program reminds me of the swim training website I use. I give it some inputs (duration of workout, equipment, level of effort) and it generates a workout for me to do. It’s very motivating because once the program gives me the plan I feel like I have to follow through and finish it. It’s somehow different than if I planned out my own workout using the same information – kind of like the program telling me what to do makes it into a game or a challenge?

      4. I agree, it’s a lot like a game. It feels kind of like those toys where you have to take care of a virtual pet, feeding it, entertaining it, cleaning up the messes it makes, except in reverse: you’re the virtual pet and the computer is taking care of you. When I first got it to a usable state, I bragged to all my friends “I wrote a computer program that cleans my house for me!” and it really does feel like that. When I don’t use it for a while, my house is a mess. When I use it, my house starts to look pretty good.

        There are a couple default tasks that don’t work for me right now, but I think if I reworded them they would work better. They are “put stuff away” (stuff? what stuff? well, yes, there’s stuff everywhere but where does it go? it doesn’t have a home. i don’t know what to do. maybe we should just skip this one.) and “organise shelves” (which shelf? *glances at shelves* well, yes, i can see it’s a bit disordered, but i don’t know what to do.) but most of the others hit the mark pretty well. I see “rubbish” and I know to walk around scanning surfaces and floors until I find garbage and then put that into a bag. (Also, organising shelves is a lower priority than cleaning kitty litter right now.)

        Maybe, down the track, I could cobble together some longform descriptions for the tasks that break things down further (and then there would be a button on the task page to show instructions). Something like:

        1) Look for dirty dishes (plates, pots, bowls, glasses, cups, mugs, spoons, knives, forks, etc). near the computer.

        2) Pick up as many as you can.

        3) Take them to the kitchen.

        4) Go back to the computer and check for more. Continue taking dishes to the kitchen until there are no more left.

        5) Check the dining room, the bedroom, especially tables and near chairs or couches and bring all dishes you find to the kitchen.

        6) When all the dishes are in the kitchen, take the clean dishes out of the drying rack and put them on the shelves and in the cabinets where they belong.

        7) Put the dirty dishes in hot soapy water.

        8) Rub them with a soapy sponge until they are clean.

        9) Put clean dishes on the drying rack to dry.

        I think for most people “wash dishes” would be enough, but for other people “wash dishes” would be just as insurmountable as “put stuff away”‘ or “organise shelves” is to me. (And even though I know all the steps, I have that one marked as overloading, because the texture of a wet sponge is not something I can tolerate easily or happily, but I’ve been getting better about doing it anyway lately.)

        1. For those who need more supports with tasks (and also for younger people), I’ve seen the exact sort of breakdown that you make here. Maybe you could copy this and use it as an example in the instructions for how people could develop additional instructions to use with the software? Like, if they get “wash dishes” they would pull out their “wash dishes” cheat sheet or checklist or visual schedule to review as they work.

          It’s very true that we’re at all different levels of abilities and some of us will need very specific step-by-step instructions for tasks that have many steps. Acknowledging that feels important.

      5. (on the other hand, some people have dishwashers, so the steps i wrote down wouldn’t be good for them, and maybe people can just google “how to wash dishes” or “how to organise shelves” if they don’t know?)

      6. I made it so you can rename pain to spoons, energy reserves, or stamina. That took some thinking, because the statements “I am in a lot of pain. my pain is at a 10. i cannot vacuum if my pain is above a 4” is the same (programmatically) as “I am out of spoons. i have 0 spoons. I cannot vacuum unless i have at least 6 spoons.” But I worked it out, and now, if you’re using “energy reserves” or whatever, it will invert the scale internally for you.

        You’re right, I think it really would be helpful to add those instructions, even if different people would need slightly different instructions. I was getting hung up on “but my instructions will be useless to people who have dishwashers!” I’ll write up a default set of instructions like these for each task. When you edit a task, you will be able to edit your copy of the instructions to suit your situation better. When you add a new task, you will be able to add a longform instruction if you want (or ignore it if you don’t want).

        I think it’s a lot easier to edit a set of directions like that than to come up with your own list. Coming up with your own list, you have to think through all the steps very carefully. Editing a list provided for you, you can just say “I don’t have a dining room, so i will delete that part.” And people can get friends or family or google to help.

      7. Done! I wrote longhand descriptions for all the tasks. When you get a task, it looks like this. http://i.imgur.com/AH0hUee.png When you click the “Detailed description” button, it looks like this: http://i.imgur.com/zuEr6YL.png

        It only shows the “detailed description” button if there is a detailed description to show. If you don’t write instructions for tasks you create, then you won’t see it on those tasks. but all the default tasks have step-by-step instructions now.

        1. Oh my gosh, that fish vacuuming is adorable! Your detailed descriptions are great. The vacuuming one has steps that I wouldn’t have thought of. I also like that “when you’re done or you can’t stand it anymore” is the ending point because sometimes the latter comes first for me and pushing beyond that point doesn’t accomplish much.

      8. Thank you! I’m glad you like the drawing. 🙂 All of the tasks have a drawing with a goldfish demonstrating what to do. I made the carpet blue so it would look like the fish was vacuuming water.

        Vacuuming in my home is an awful chore because the carpet is made of nylon (and I’m renting, so there’s nought to be done for it) and it wraps it’s little fibres around every piece of dirt, hair, or crumb and won’t let go. Using the brush (I use a rubber brush, like the ones you use for grooming a pet) coaxes some of the hair out at least, but no amount of vacuuming will make the carpet anything but ugly. I know, because I vacuumed for 12 hours straight once and the next day it looked like I hadn’t bothered — and I always take my shoes off when I come inside the house :/. After that, I gave up on vacuuming for an entire year. So, the end point is always “okay I can’t take this noise any more and I’m not getting anywhere anyway but at least there’s a lot of dirt in the vacuum cleaner bag now so I guess it was better than nothing?”

        That’s why I made emptying the bag the last step. That way, even if the carpet doesn’t look much better, you can still see that you removed a lot of dust from it.

        I keep the carpet covered in sheets to hide it, and so i won’t have to touch its awful texture, and ostensibly to keep it cleaner. Then I change the sheets, pick them up carefully and take them to the balcony to shake them and then wash them. And then I vacuum before putting a new sheet down. This doesn’t seem to affect the amount of vacuuming this carpet needs, but it at least keeps it mostly hidden from sight.

        When I have my own place, I’m not going to have any carpet at all, just small rugs that can be taken outside and beaten with a broom.

          1. Hi! I know you are on vacation and then you will be busy moving, so I don’t expect you to reply soon, but I thought I’d let you know that I finished my website and it’s at http://www.goal-fish.org, so if you want to give it a try that would be cool. I hope you find it helpful — maybe you could add a task “unpack a box” to help with unpacking.

            1. I’m sort of back – responding to comments at least. Your program is so cool! I tested it out a bit and it made me want to get up and do stuff. I like how clean the interface is and how the illustrations are bright and cheerful. I especially liked that it told me to “just go to bed” when I set nighttime tasks with a high pain level and “overloaded” checked.

              Is it ready for me to share with readers? I’d like to give it a separate post because a) it’s awesome and b) I want this to be a place that supports projects by and for people on the spectrum. Also, I have one more suggestion – how about putting the “donate” link at the top of the page so it’s easier for people to find? I like to donate to sites that offer freeware but don’t want to have to search for how to do it and having it in an easy to see place also reminds that supporting the developer is a good thing. Don’t be shy! 🙂

            2. Thanks for checking it out! It tells you “Just go to bed.” if it can’t find any tasks that match your criteria. If you have both “chores” and “fun” selected (or just “fun”), there are still some tasks it can find for you with the criteria you set: basic self care tasks like “eat”, “drink”, “nap”, probably “bathe” as well. Many of my users, including me, have made a “self-care” category to move those and other similar tasks too.

              It is ready to be shared! There are some small enhancements that I have planned: ability to change the colour scheme on the site, things like that, but the site is completely usable as it is and I do a lot of very happy stimming whenever someone registers: 22 people so far! (I started flapping just thinking about it, heh. People are using and enjoying something I made! And they are having as much fun with it as I am! Yay!) I’d recommend making an account before sharing it with your readers so you can explore it a little and know how things work. I’ll definitely show up in the comments on the post you make to answer any questions people might have.

              If you make an account, you can add your own tasks, customise the tasks that already exist (by default “overloading” means “requires sponges” because I find the texture of wet sponges overloading. That’s one thing that will be different for everybody.) You can change “pain” to energy reserves, stamina, or spoons in your preferences. You can hide constraints that you don’t find meaningful (such as number of people required or whatever). You can also hide tasks after you do them, so it won’t bug you to change your sheets again for a week (or however long you choose.) You can make your own categories. You can track pain/spoons/energy/stamina for your own records (opt-in, there’s a checkbox on the edit preferences page). You can upload your own picture for tasks and write your own step by step instructions (or copy paste instructions from elsewhere on the internet into the box on the add/edit tasks page.)

              I would be very happy if you shared it with your readers, and you can encourage them to share it with their friends too. I’ve got plenty of bandwidth, so I’d be delighted to be deluged by new people. You can quote any of the text I wrote on the help page if that would be helpful to you. Most of the feedback I’ve received so far has been from other neurodivergent people who said the site was helpful with their bipolar — I’m guessing with motivation when depressed and with structure when manic. That wasn’t a use case I had thought of when I was designing it, but I’m really glad it is helpful to them. I think Goal-Fish is the sort of thing that would be especially helpful to anyone with choice paralysis or executive functioning issues, both of which are pretty common on the autistic spectrum. It helps me with both of those things at least.

              (I’m getting a little closer to thinking I might be on the spectrum, but I still really don’t know. I think I’m just nearby the spectrum with a lot of overlapping traits, but a lot of autistic people seem to read me as autistic and I think that means something. I don’t object to being autistic, I just really care about precision and don’t want to claim to be something I’m not. But the degree to which I care about precision is another point in favour of “maybe autistic” so…)

              I will move donate from the footer to the header. You’re not the first to complain that it was too hard to figure out how to throw money at me. It is true that I’m self-conscious about being seen as begging for money, but I suppose it’s not begging if people are paying for a service I’m providing: when people pay me, I go into the database and increase the limit on the number of tasks and categories they can add. And I am in a situation where even small amounts of money would noticeably improve my standard of living, so there is that.

              1. Yes, I’ll make an account and play around with a bit so I can do a nice thorough write up. I’ll also give the FAQ a good read and pull some features out of there to highlight. I like how much you’ve built in with regard to accessibility and customizations. Definitely widens the range of people that the software can apply to.

                It’s great that you already have registered users.

                Also, apologies if I accidentally put you on the spectrum (in my replies here) when you don’t identify as such! My bad. You seem wonderfully neurodivergent to me and I just made the leap to autistic without checking my memory as to whether you’ve ever told you were or not. Is it okay if I use neurodivergent? I like the idea of “by us, for us” and would like to emphasize that in my review if it’s appropriate. If not, that’s cool too. Just give me some guidance regarding your preferences.

                Also, should I refer to you by the handle you use here (Anonymus) when I write about you as the creator or do you have another preferred moniker?

            3. Cool. I hope you have fun playing with it. 🙂

              Thanks for the donation! *squeak* I can get quite a few meals out of that, where I live. I’ve increased the number of categories and tasks you can add.

              No apologies necessary, it’s okay. I don’t mind really, I just worry about misrepresenting myself. Neurodivergent is a much broader term than autistic, but it’s about as precise as I can get right now. I like the term. Whatever I am, I’m not neurotypical. 🙂 I like “by us for us” too; i just mean a somewhat broader “us”. And, heck, I might be autistic, I just don’t know. There was a lot of other stuff going on in my childhood that could adequately explain the strange behaviours I had on its own, but that doesn’t preclude autism because it could have been both. I didn’t have any developmental delays (except with social and emotional skills.) I do have some trouble with speech, but that started around puberty and there are some alternate explanations there too. My fine motor skills are good — I can write legibly with both hands at once, and I have nice handwriting. I think my gross motor skills are okay (but I seem to get burned on the stove a lot. Getting my pocket caught in doorhandles is a regular thing. And whenever I take off my shirt there seems to be a ceiling light or a fan or a doorframe above me to knock into. That could be autism or it could be on the clumsy side of normal. I don’t know. I’m just not so good at keeping track of where all of me is in relation to space.) I have sensory troubles but some of it could be PTSD related (but not all of it). But there is a lot about autism that seems to almost fit.

              I do know that reading blogs by adult autistics helps. Coping skills that work for adult autistics often work for me: not everything, but nothing is going to work for everybody; autism is a broad spectrum. But especially executive functioning techniques that I’ve come across have been helpful, and making systems and rulesets and formulating algorithms for basic day-to-day tasks that neurotypicals don’t seem to need conscious algorithms for. When I read about something, I try it out and if helps me be more functional, helps me feel like I’m more myself and makes it easier to feed myself or get dressed in the morning or whatever, then I keep it. So, I think it might work both ways: some things that have been helpful to me may be helpful to people who are actually autistic.

              Names. I used to have a name (not one you would have known) but then stuff happened and I didn’t have a name any more after that. Oh, uh, I made a tumblr recently, and followed you (and the rest of the tumblrs I’d been reading in my rss reader, there were quite a bunch and I realised having a dashboard would be easier than keeping track of them all via rss). I’m slepaulica over there. So I guess you could call me Slepa Ulica; it is shorter than “a random neurodivergent who keeps commenting on my blog”.

              1. You’re welcome! I figured I should put my money where my mouth is, literally, and I also would like to be able to review the “upgraded” version. I’m going to post a write up later this week. Sorry for the delayed responses. I’m still struggling to get my act together a bit.

                I’ll use your Tumblr handle so that I have something concise and concrete to call you but also let people know the handle you comment here under because that’s how most regular readers will recognize you, I’m sure.

                About the labels–I think you’re right about that not being as important as self-understanding and finding the things that help us make our lives better. 🙂

            4. hi! no need to apologise for taking time to yourself and doing self care. It’s okay. I haven’t been feeling very languagey this week either.

              It’s a good idea to use both names, Anonymus and Slepa Ulica. I’ve been Anonymus for a very long time.

              1. Thank you for the reminder about self care. It’s an ongoing battle to make that happen. I’m going to post my write up tomorrow so hopefully you’ll get some traffic/new users.

                One small thing occurred to me when I was testdriving the software. Can you link the fish illustration in the upper left of the page to the “home/constraints” page? I know that the “constraints” link takes users there but it took me a long time to realize constraints page = home page. Just a thought. I’m really impressed with how feature-rich and easy to use the software is! You’ve done a terrific job with it.

            5. I linked the fish logo to the home/constraints page now. I’d meant to do that earlier. Good catch!

              I’m glad you like the site and that you find it easy to use. That’s what I was hoping it would be. 🙂

              1. Posted it! I hope it’s okay that I used a couple of your illustrations and that I hit on all the key points. Mostly I hope you get some new users and they shower you with donations and get lots of use out of your cool creation.

            6. yay yay yay yay yay!

              Ten people have signed up so far, (more people than in the 3 weeks prior to today!) and about a hundred people have looked at it, just in the few hours since you posted. (you have a very popular blog!) I am very happy!
              One person sent me a dollar so I’ve now made a grand total of $16, which is fantastic. I could buy like, like, 16 kg of potatoes with $16. 😀

              1. Yay! A lot of posts continue to get traffic for a long time after I first put them up so hopefully this will continue to be a source of visitors for you.

                That’s a lot of potatoes! 🙂

            7. It is a lot of potatoes! I wouldn’t buy that many all at once; they’d rot before I could use them all. I’ve now got 670 hits from you (possibly not all unique hits, but it’s still an excitingly large number!) And 41 people (including you) have signed up via you, which is more than twice as many users as I had before!

              I’m getting over 200 new unique hits per day so it’s really exciting. I expect it will eventually taper off, but it’s not showing any signs of doing so yet. (Bandwidth wise, I can handle several thousand times this many, so it’s all good.)

              I have spent the past few days being very jubilant and bouncy. Thank you so much for your kind, thoughtful review of my site, and for encouraging me to finish the site.

  10. 1. Self diagnosed – my whole life became more positive, mostly because I realised I wasn’t bad and I wasn’t broken. My relationship with my partner is what has improved the most because I’m more willing to talk about issues I have because now I know they aren’t a product of me being disturbed, stupid, or crazy and are just my reactions to the world around me. I used to hide EVERYTHING and he thought I was extremely difficult. Now he still thinks I’m extremely difficult but he understands and knows how to deal. Much better 🙂

    2. I still do this. I don’t know how to stop either. I’ve spent so much time feeling like saying sorry that it is the only thing I feel will smooth over my awkwardness/weirdness/faux pas -it’s hard to get out of the habit.

    3. I likened my life, when explaining it to my husband, as using a flat head screwdriver my entire life and wondering why the hell nothing was working out for me. Realizing I was on the spectrum was like someone handing me philips head screwdriver and suddenly I was able to put things together. Having the right tools, both physically and metaphorically, is everything.

    4. I feel pretty stressed when other people are upset and having an argument. I sweat and feel nauseous. If I leave I will, but that’s not always possible.

    5. No – I’m pretty anal about this. I’d plan every moment until I died if that was possible; I’m a list maker.

    6. I try to use a program like Flylady or to make up my own schedule. I have to have things clean because I get really bothered and dysfunctional otherwise, but it’s difficult for me to keep on top of without following a schedule exactly.

    7. I go through periods where I do this a lot. I feel like talking myself through how NOT to catatophise is somewhat helpful as well as the resolve to ride it out. I do try to do some meditation as well, even though I feel like I’m doing it all wrong it does seem to help.

    8. I feel unable to sleep, my senses are sharper, and I can’t eat during times of extreme emotional stress like grief.

    9. I’ve been told, repeatedly, that I’m too loud and too fast. Sometimes I realise I’m almost shouting because I’m excited. But then I tend to speak too quietly as well. I don’t find I’m really able to modulate at all unless someone points it out to me – I don’t notice on my own.

    10. No, I’ve been relatively free of any of these issues.

  11. I love your survey!!! This is the first one I’ve done, I didn’t realise you were doing these.
    I did it via Survey Monkey, it’s just easier for me that way 🙂

  12. anonymous answers:

    Q1: I did a lot of learning, about myself. I because a lot less hard on myself. I educated my family and explained to them why I am the way I am. I’m also planning to use my diagnosis to help me actually complete a uni degree.

    Q2: I am a serial Sorry-er. I apologise to EVERYONE about everything. I have no idea how to break this habbit.

    Q3: I saw a really cool thing on the net the other day… it was about women (but I don’t think it applies to all women) that said to imagine what it’s like to be (in my case, an Aspie) imagine running a browser with 47 different tabs open at the same time. This is what it’s like for me, I am constantly thinking about many different concepts at once. Everything I think about appears in my mind as pictures or movies.

    Q4: I can’t deal with confrontations of any kind. If they are around me my FLIGHT mode kicks in full force. Sometimes, obviously, I cannot escape and so I tend to physically try to make myself smaller (virtually impossible at 150kgs) by curling up, sitting in a corner, lowering my head, avoiding ALL eye contact.

    Q5: Yes. You know those folks who are all “ooooh you gotta have a 5 year plan!” SERIOUSLY? FIVE YEARS?? I can’t even plan for next month let alone 5 years from now. How am I supposed to know what things are going to happen or change in my life to allow me to plan that far ahead?

    Q6: I’m so bad with cleaning 😦 I wish I could attach a photo of my house to show you this… actually on further thought – No I don’t!! I suddenly realise my house is disgusting, and then it’s too overwhelming for me to clean and I get all angry and depressed. I live so much in my head that I don’t notice it getting bad 😦

    Q7: I don’t know what this is?

    Q8: I don’t think so…

    Q9: I think I’m pretty good at this, although when I’m excited I tend to talk quite fast.

    Q10: I don’t have any other illnesses/conditions. But I do get VERY tired a lot of the time, although I put this down to such an intense and active dream state that I’m weary upon waking because Iv’e been so emotionally active while asleep.

  13. anonymous answers:

    Q1: I began incorporating meditation and deep pressure into my daily life which helped me stay calm and focused to take care of my family better. I began forgiving behaviors that are related to sensory overload in my family members.

    Q2: I pause before I speak and speak very slowly. Every sentence is closely considered before being stated.

    Q3: I describe my sensory issues as the feelings of oversensitivity/weakness one feels when sick or overtired.

    Q4: I avoid these people or walk away/leave the room during the situation.

    Q5: No.

    Q6: I label cleaning on the calendar after it is done so that I cannot fool myself that “I just did that” and reward myself with chocolate.

    Q7: No.

    Q8: I feel physical pain quite often from anxiety and hectic schedules.

    Q9: (Same as #2) I pause before I speak and speak very slowly. Every sentence is closely considered before being stated.

    Q10: I have fibromyalgia. I did have chronic fatigue but it went away when I began taking methylated folic acid for my genetic mutation (MTHFR, a common mutation associated with autism and ADHD). I know that my anxiety makes my body tighten up which makes me feel pain. I am sensory defensive. Loud noises and certain kinds of lights give me immediate headaches. I also have bad posture due to a need to curl my body up tightly for deep pressure input which causes muscle pain.

  14. anonymous answers:

    Q1: Nothing really. If anything my anxiety has increased since diagnosis.

    Q2: I do this ALL THE TIME. I have never managed to break this habit.

    Q3: I don’t. I can’t. I can never describe my feelings verbally or explain things, can’t find the words at all.

    Q4: I can’t stand conflict or confrontation of any kind. I tend to withdraw, shut down and go into my shell or start crying.

    Q5: Yes, I’ve never had any ‘life plan’ or goals. I don’t even seem to have any clear concept of what I want out of life.

    Q6: I am never on top of cleaning. I only do it because otherwise my husband and I argue. It’s not because I don’t notice things are messy or dirty, but more because I never seem to get any ‘pay offs’ or postive feeling from housework. I just feel like it’s another thing I fail at and get very depressed, therefore I would rather spend time on my special interests because I do get pay offs with that.

    Q7: Yes, I do. I am terribly negative. I have tried some CBT therapy but unless I am extremely mindful of using these techniques and challenging thought patterns it just continues. It’s a constant drainging effort.

    Q8: I suffer from a lot of dizziness and vertigo which has been dismissed as anxiety by specialist. It is much worse when I’m stressed or very emotional eg. experiencing grief.

    Q9: I don’t speak much at all. When I do, I speak very softly and people usually cannot hear me. I try to speak up but it honestly feels like I’m shouting.

    Q10: I have recurring dizziness and vertigo as I mentioned for Q8. Yes, I do think those autistic traits have an effect on it. If I’m in an overwhelming environment with a lot of noise, smells, fluorescent lights eg. a shopping mall, I am super paranoid of feeling dizzy.

  15. anonymous answers:

    Q1: Depends on your definition of positive. Working towards letting go of a number of expectations re friendships, having a relationship and so on. Trying to figure out all the ways I annoy people and stop doing that.

    Q3: I do it successfully on my blog, but IRL I’ve stopped doing it because all I get is ‘I feel like that sometimes too’ and completely missing the point.

    Q4: Hate it. I shake and feel sick and want to hide. I either go into emotional lockdown or I walk away (not always possible)

    Q5: I can plan a specific event like a holiday, book flights etc, but more general planning, no, I find it impossible to think further ahead than the next few days.

    Q6: It’s always messy. I do a little bit of cleaning every few days.

    Q7: I try and stop myself from having any expectations. The more I plan, the harder it is when it goes wrong.

    Q8: I’ve been depressed all my life and I don’t really understand what it’s like to feel happy so it’s hard to make a comparison. On really bad days I get sensory overload, but then I also dissociate to the point that I can’t feel anything at all.

    Q9: I struggle to control the speed and loudness of my voice. it’s related to anxiety and the speed my brain is moving.

    Q10: I don’t know how much pain is normal. If you poke or press me almost anywhere it will hurt, but it’s always been like that so I don’t know if it’s the same for everyone. I dread abdominal examinations because I hate being touched but also because it’s always tender everywhere, so I never know what to say. I examine a lot of people in my job and I don’t know if they don’t get that pain or do but are able to discriminate between it and real pain.
    I had back pain earlier this year to the point that I had leg weakness and numbness but I could manage the pain with antiinflammatories. When I see people with a similar amount of numbness/weakness they are usually lying on a bed whimpering and refusing to move. So I’m not sure about any of this.

  16. 1. Because nobody told me what was Asperger’s syndrome, I had it pretty difficult to goes by. I was totally denying it (well, someone say you are retarded and stupid and autistic, when you have a stereotype in mind… not really near!). I was simply denying it for about the last seven years.

    2. I had the «sorry» reflexes since I was able to speak. My mom told me I was using it instead of «Hello», when I was younger. Didn’t find a way to get rid of it, other than simply shut my mouth.

    3. Er… I usually don’t try to, because I always get the «well, that pretty normal to get stressed when going somewhere you never been…» or «everybody suck when it comes down to social relationship»… And end up using the Sheldon and Sherlock Holmes examples even through both are far from me!

    4. I can’t stand people arguing in front of me, both because of the sound and the fact that I don’t have a clue about what to do to make them stop arguing. Usually I just stand here, trying to find a logical way to solve the conflict… Not really helpful, sorry about that!

    5. Future planning? Like knowing what you want to do for the rest of your life, what to do in order to become that, and putting effort into the process? If this is what the person was asking, well… You’re not alone. I’m going to university with a total blank in my planning. Not like I don’t know what I might want to do, but hell, I don’t have a clue were I will be in 10 years!

    6. As for cleaning, I usually have two way to get things done. One is… well, not doing anything until I broke myself something or something like that. The other one is to make a full planning to do things on a calendar, like : Mondays I’m cleaning this room (insert a to do list), 2 weeks per month I’m this… vacuum on Saturday etc. I have a Hell of a time when I’m not certain if I need to do something, and always end up doing nothing. Planning everything from homework to washing the dishes is the only way I know to get myself to do cleaning…

    8 and 9 come together, because my usual reaction to stress is both being abnormally sensible to light, sound and odors (like today, it’s almost raining and I was wearing sunglasses because I thought it was painful, but when I’m relaxed it goes less hard to deal with) and messing up language. Last week I had an oral examination, I was so stressful that I ended up speaking way to soft and were missing at least 2 words per sentence. But even without stress, I speak way too quick. I wasn’t aware of that before one of my friend recorded me to prove his argument to be right. As for speaking too loud, I never get the fact out before somebody else is telling me, usually with a bit of rage in the voice. I think there is nothing we can do about this, else than articulate and take care of what we say and how we say it.

    10. Never had any of those «chronic» illness, but I tend to get infections at least one or two time per months, and I’m always sleepy. But the sleepiness can be put on the lack of sleep that every student experiment , and I never had any official diagnostic.

    Sorry about the book! I love those Tuesday survey! (Yes, even through I can’t read them before Wednesday)

  17. anonymous answers:

    Q1: More aware of stress and sensory triggers, stopped trying hard to be “normal”, learning to feel and describe the feeling to the SO when I am down, and be kinder to myself.

    Q2: Saying sorry is almost a reflect for me, sometimes I wonder why was I apologising for after saying it. Most of the time I couldn’t figure out why. I am glad I am not the only one here!

    Q3: I usually use sensory issues where people can put themselves in my shoes, such as noise and my awesome pain threshold, as well as the little odd facts like why I am good at trivia and quiz. I have not describe myself to many face-to-face and I have not been successful in achieving the aha! moment.

    Q4: I walk away. If I couldn’t make an escape I would cover my ears and close my eyes.

    Q5: I love travel planning! I will obsess over small details like how and when do I get my laundry done even before I book the flights! Apart from that I can’t even plan dinner for the next few days while in the grocery store.

    Q6: I have cleaning schedules, I also see cleaning as a form of exercise as motivation. I don’t think I have OCD but seeing dust pile irritate me, I must do something about it and cannot relax until they are gone. Having a clean apartment also make me feel accomplished.

    Q7: Yes, especially facing unfamiliar situation or environment, however, when things turn out better than I visualised they usually came as a good surprise. I use planning and talking to my SO to manage my negative thoughts.

    Q8: I don’t hear very well when I am depressed, as if my body is in shut down mode.

    Q9: I was told I was too loud in a quiet place and too soft in a loud place. No tips as I don’t notice them myself.

    Q10: No chronic illness, just mild asthma and skin allergy. I did fracture my foot once and didn’t realise it was bad until one month later when Dad noticed me limping and made me see a doctor.

  18. anonymous answers:

    Q2: I do it… Been doing it for years…. Gosh I didn’t know that anyone else on the spectrum did it…

    Q4: I just watch…when I get tired of it , I move away. I ve not got any sensory issues as far as I’m concerned…apart from loneliness in crowded social places and high tolerance to very hot steaming bath water and hot chilli.

    Q5: I find it hard. Very hard. I could spend days trying to plan and end up doing nothing. I hate it when my wife asks us to plan …easily switch off…

    Q6: Usually messy around me. But bookshelf is normally orderly because I can’t stand it being otherwise.

    Q8: Grieving for me is an occasional skip of the heart, just like I ve been startled suddenly…goes away and comes back 30 minutes later. My heart “jumps and sinks” anytime I remember the person or thing I’m grieving…apart from that , I function normally(or so I think) .its a personal and private thing. No one else could ever work out from my appearance what I’m going through.

    Q9: I speak to the beat of my heart most of the time without realising… I try to consciously slow down when speaking..people have to really concentrate to hear me. I tend to speak unusually softly in an attempt to convey politeness so I don’t create enemies like I did in my teens… No joy though…

    Q10: I experience chronic tiredness… But this is due to social anxiety and social interaction, working hard to blend in etc… Strangely, I am sensitive to muscle discomfort and I find some aches enjoyable. Days after I’ve worked out I keep pressing and jabbing the aching muscle just to relieve that moment of bitter sweet pain. I don’t think it’s related to self harm .

  19. Oh my, yes!

    What positive changes did you make to your life after your diagnosis? I have allowed myself to be myself instead of trying to be somebody else. I am in the continual process of re-discovering my “true” self and understanding that “normal” for me is different than what I have believed it should be, and that’s ok. That doesn’t mean I don’t feel pressured to be different or don’t feel guilty or sad that I’m not likely to be able to change some things, but it’s getting easier to accept myself as time goes on.

    Over-apologising/apologising as a reflex action: Me, too! People have told me not to apologize so much. I’ve tried to not do it, but when I really care about someone or sense that I’ve made even a tiny misjudgement, I will apologize all over myself. I know it gets on people’s nerves, but I still feel so unsure about what to say/do around people that I tend to apologize a lot.

    Does anyone else have issues with conflict/arguments/shouting matches in front of you? How do you deal with this? I hate, loathe and abominate conflict. It makes me shut down completely, and I can’t think. When I get really angry, I will cry rather than shout. It makes me feel physically ill. I haven’t yet found a way to deal with it.

    Does anyone else have trouble with “future planning”? I worry about the future a lot, even little things like packing for an overnight in a hotel can be anxiety producing, never mind planning for retirement or something like that. I will either overplan or try to ignore the situation. I was going to take a trip to Rochester New York at the end of May, but the planning just overwhelmed me, and I decided not to go. My partner is the one who does a lot of arranging of trips and vacations for us. If she didn’t do it, we probably wouldn’t go anywhere.

    How do you stay on top of cleaning? What contextual cues do you use to get you to do things around the house? I hate mess and clutter, so I’d clean all the time if my partner would let me. She, on the other hand, is casual about keeping up on chores. I’ve forced myself not to look too closely, and we’ve been able to hire a nice woman to come in to clean every two weeks. I make sure dishes are done, and my partner does the laundry, but when things get too out of hand, I will take care of things rather than waiting for her to get around to it.

    Do you catastrophise and if so, have you strategies for managing it? Yeah, I do this. I try to tell myself that it’s all in my head, and that helps somewhat, but it depends on how important the situation is.

    Do you experience emotional distress, such as depression and grieving, in unusual ways, such as increased sensory challenges or physical pain? Oh, you betcha. My stomach and back will hurt. I will stop eating and sleeping. I become more sensitive to light and sound (I’m hypersensitive to sound as it is), and I will develop chronic headaches – migraines that will last three days. Not fun.

    Do you have trouble speaking at a normal pace? Do you have any tips for modulating your voice? People say I talk too softly and/or too fast. When I get excited, my partner says I am too loud sometimes. I try to speak up and speak more slowly, but it doesn’t always work, and I haven’t gotten a formula that seems to fit everyone.

  20. anonymous answers:

    Q1: Am working on that, but as for many people feel freer about being me. Just haven’t had much time to work on it yet. Only couple of weeks since diagnosis.

    Q2: Yes. Also used to use the standard female “little girl” voice that my partner criticised me for. If I can see someone might have reason to be upset I wait until a quiet time and offer an apology for any misunderstanding – then let them talk! Also, I turned saying ‘Soryy’ (as so many other things) into a joke, “Oh sorry, oh sorreeeeee, sorreeee, sorreeee!” If you can make people laugh even a little they appear to be very forgiving.

    Q3: Nobody is really interested, and I haven’t tried to explain it.

    Q4: Hate it, I flinch/cringe, prefer to escape.

    Q5: Yes, apart from my lists of things to do for a charity I work with and my work I don’t think about myself in the future.

    Q6: I don’t have issues with this. It’s not a priority as such, especially as at times i have 6 dogs living in the house, but I do some every week or so. My partner also does some.

    Q7: Not badly for a long time, no point. Things just happen, some of them bad and out of our control. I still lose sleep, but not to the same degree.

    Q8: I shut down more, so am more clumsy.

    Q9: Yes, too fast usually. Sometimes I just repeat myself more slowly without having t be asked when I see the incomprehension on someone’s face.

    Q10: I have asthma, type 1 diabetes, food allergies, eczema, chronic anaemia (bleeding disorder).
    My self care is okay, but I often I forget that there is a physical reason for my fatigue, and just keep trying to carry on. I can often quite surprised when I realise my blood sugars are low or I need a transfusion or I have an infection and I can do something about it.
    My preference when feeling low/ill is to go to bed and rest/sleep it out. My partner says I remind him of a sick cat – crawling away and I’ll come back when I’m better.

  21. 1. No diagnosis. I am going to try to stop using Wine as a mood / anxiety helper. I need to accept some people won’t ‘get’ me or won’t even like me. I don’t have to be everyone’s ‘friend’ . Next, I need to start liking myself more. I need to accept that I may not be able to socialize like other people. This is a new start . I am worried though.
    2. All I do is apologise! I’m sick of it. I actually purposely ended one friendship because I seemed to be apologizing more to her than not. She just didn’t understand my limitations.
    3. That’s a tough one. My husband gets it but he’s an Aspie. I could tell people I feel out of place and in a constant state of anxiety. My brain never shuts off.(except after half bottle of wine)!
    4. I hate loud voices! I tell my husband & son to be quiet when they start to get loud. If strangers are arguing in front of me , I get a little anxious. I just try to exit the general area discreetly .
    5. Sometimes I think about the future…. And just get anxious. The unknown scares the crap out of me.
    6. I used to be a ‘neat freak’ . I have a half renovated house, so I kinda gave up on being super clean. My house is clean in general. Eg. Dishes always get put into the dishwasher. Bathroom gets a good cleaning on weekends…etc.
    7. Catastrophise ?!?! Massively , I need to work on that.
    8. I get itchy wheels ( hives ) from many things so ya. Also when very excited or nervous my throat tightens up. If this happens while eating , food gets stuck. I’ve had the hymlic ( not sure of spelling ) performed many times.
    9. I have a monotone voice.( that could be my Acadian heritage ) when excited I talk fast and tend to monologue a little. I also interrupt a lot . I am trying to stop that ;it’s a bit rude!
    10. Anxiety , Asthma , Allergies , Depression. Diagnosed with Social Phobia & Generalized Anxiety Disorder.
    Well, I’ve been using Alcohol to make myself more social. This needs to stop, I just don’t know how yet.
    I have a very low pain threshold . I faint a lot. ( even blood tests cause a fainting spell)

  22. 1) Took more time to break tasks down into “chunks”, and make a list of them, so I panic less when faced with a bunch of things that need to get done. Refused to be embarrassed any more by watching cartoons and anime; I can see people’s emotions there, when I can’t always on live TV, so why not watch something where I don’t have to work as hard to figure out what’s going on? Read up on autism and neurotypicals, and did a lot of headdesk-ing with “Oh, that’s why” attached. “Spoon Theory” was very helpful; if I only have so much energy in a day, I can schedule what absolutely needs to get done and hit that first.

    2) Ooof. That’s one of the hardest things to get through my head; most people who say “sorry” don’t mean it, and most people say nothing when I would say sorry. Don’t think I’ve broken the habit yet.

    3) Well, someone else described my view on social interactions this way. “It’s like furniture with dustcovers. Most people just see the dustcovers. Some people see the furniture, but they still know the dustcovers are there. But YOU-” Insert pointing finger here, “-It’s like the dustcovers _don’t exist.”_

    4) Augh. Conflicts bad. People yelling, very bad. (Even when they’re not yelling at me, which is common.) Best thing to do is find somewhere else to be. If that’s not possible, I try to focus on not having a whiteout or saying anything I might regret later.

    5) “What do you want to do five years from now?” I dread that question. Every time I’ve tried to plan for the future, something has always happened to seriously derail it. I plan the next day, and roughly the next week; everything beyond that is tentative.

    6) Cleaning – only way I’ve found that works is to make a schedule for it. Always wash the dishes after lunch, etc. Wash laundry when you get to X number of underwear. And so on. I like a neat and uncluttered room as much as the next person, I just usually don’t have the energy to keep things that way. …Well, mostly as much as the next person. *Sheepish* Bright shiny sparkly sinks and stuff just don’t thrill me the way most people say they should.

    7) Disaster is around every corner. I kind of accept that as a given. Mostly I just try to make fallback plans. “If X happens, I’ll do this.”

    8) I get a lot of “am I supposed to be feeling something?” reactions at the time of an event. Then I may have crying jags set off for years later. Horrible events seem to make everything too bright, loud, etc.

    9) I can keep a normal pace unless I get interested in something. Then I can get loud. I’m not sure how to fix that, though I sometimes avoid it by not talking in public about things that interest me.

    10) Allergies to the extreme. Some food, some environmental; many of which result in pain. Poor emotional awareness definitely contributed to the problem – I apparently have a severe wheat allergy, which would (among other problems) lead to explosions of temper. I only figured that out after eliminating the wheat due to other severe symptoms, and realizing the people in my life were slightly easier to deal with. It took about 2 months away from that allergen before I could identify what _wasn’t_ happening.

  23. anonymous answers:

    Q2: I’m told I apologise far too much. But in other circumstances, I won’t apologise even when people might expect me to. Same thing with the words “please” and “thank you”.

    Q4: Yes; usually with earphones.

    Q7: Yes. No.

    Q9: Sometimes. No.

    Q10: Yes; I have something that is probably anxiety but appeared to be like fibromyalgia at first. I have had headaches every day for several years.

  24. anonymous answers:

    Q1: No diagnosis; it’s more self-exploration with the conclusion that I’m either autistic or nearly so. I’ve become kinder to myself, for example when I can feel that it’s more effort than usual to speak, I just don’t speak rather than trying to push through it. I’m also considering professional diagnosis for accommodations in college.

    Q3: Whenever I’ve tried describing myself, my friends either don’t get it or it sounds to them like it’s just me being extremely introverted. Though I’ve been known to ask some really odd questions that they don’t know how to answer because they don’t live with the same premise as me, so they just kind of accept that I’m weird.

    Q5: Definitely! Things aren’t really real for me unless they’re right in front of me. But I’ve found that following my whims and not worrying about it seems to work pretty well.

    Q6: For dishes I have limited spoons (the literal kind, that you eat with) and I know when I’m running low on spoons, I need to wash the dishes. When I wash the dishes, I check the stove to see if it needs to be cleaned. Laundry, I keep an eye on how much underwear I have left. But I don’t vacuum and I’m horrible about cleaning the bathroom, sweeping, and mopping.

    Q8: I’ve realised that I experience emotion in general as tingling on my skin, and with distress, the tingling always feels bad.

    Q9: I think my pacing is OK–I’ve never received any comments on it. But I speak softly so my friends will comment on it and sometimes make fun of me for it a little bit. Though when I’m really energetic and excited, I tend to get really loud without realising it. The volume thing bothers other people more than it does me.

  25. 1What positive changes did you make to your life after your diagnosis?
    I learned to accept when I am overloaded by sensory stimuli. (I even made an “Aspie handbag” of things I need when I am overloaded- hoodie, sweats, comforts, music, earphones, disinfectant, lavender satchel ect.) I became less concerned about trying so hard with people and stuck to the people who actually care enough to understand yet not treat me as inferior. I dropped many events from my schedule. I allow myself to be what I need to be…as a result I do not struggle with physical illness as much.

    2. Over-apologising/apologising as a reflex action: Seriously, “sorry” has become my standard greeting to people at uni. Does anyone else do this? Has anyone managed to break the habit? How? Yes I say sorry too much. Esp when nervous. I have literally bitten my tongue to not do it. I picture my little son having to say it to people and it stops me. I dont want him to apologize for who he is so I try to remember to set the example.

    3.How do you all describe what it’s like to be you to someone else? What do you compare these things to in a way that makes others have that aha! moment? This is tricky because my short term memory is awful. When under pressure I forget all the facts and terminology I know. I usually end up feeling like an epic failure…so instead I send out emails twice a year with info and links…People who want to read will and people who want to ignore can…I want to get better at this though…

    4. Does anyone else have issues with conflict/arguments/shouting matches in front of you? How do you deal with this? Yes. My heart rate doubles…I can feel it almost trying to get out of my chest. I used to snap and stand up and raise my voice and say “enough” or something. Now I shut it off. I walk away or I laugh nervously and try to make a peaceful joke.

    5. Does anyone else have trouble with “future planning”? I am spontaneous to the point of annoying my hubby and friends. I can not pre plan because I do not know if I will feel sick or off or just need to be alone that day. Everything has to be spontaneous.

    7. How do you stay on top of cleaning? What contextual cues do you use to get you to do things around the house? I don’t. I wait until it is a disaster and then I spend a full day doing EVERYTHING – from toilets to laundry to dusting to dishes to mopping to rooms. My kids are used to this and help out too. I have tried schedules and other tips but none work. I just have to let it mess and clean when I feel like it. I know that when it needs cleaning I will rise to the occasion on a good day- get it all done and mostly enjoy it.

    8.Do you catastrophise and if so, have you strategies for managing it?
    Pshaw- story of my life! LOL. I actually use cognitive therapy for this with my therapist. In this regard it works well. I have re trained the wiring in my brain so that when I start- it is immediately re directed. It took 6 years but I am getting good at re directing:)

    9.Do you experience emotional distress, such as depression and grieving, in unusual ways, such as increased sensory challenges or physical pain? YES> ALL OF THE ABOVE. Always increased sensory and physical pain. I usually end up in ER.

    10.) Do you have trouble speaking at a normal pace? Do you have any tips for modulating your voice? Since I was little I constantly get “SLOW DOWN. SPEAK QUIETLY.” I dont have any tips because I can not do it on most days. I do try for lower and slower when I can…but if I can not I just think- whatever- if you cant understand me in this moment- move on:)

    11.) Have you experienced chronic fatigue or chronic pain? Do you have other chronic illnesses? If so, do you think autistic traits such as poor emotional awareness and sensory differences such as oversensitivity to pain or muscle discomfort have any effect on these?
    Yes, I have been diagnosed with Chronic fatigue syndrome, Fibromyalgia, Irritable Bowel, PMDD ect. I do think autistic traits can emphasize this but I also think it is because the same area in the brain is affected. We are wired differently and even our guts are different. Which is why we often experience gut issues…I think it is all related:)

  26. 1. Still ingesting
    2. —
    3. I don’t
    4. Since a young lad, I stand try to wall off the noise, rarely succeed, become very agitated and leave if possible
    5. Planning? I never could comprehend how one could do this? It’s terribly hard to pack for a 3 day trip, for activities a week hence
    6. Thickness of dust. Do dishes every 2 days by having scant silverware
    7.??
    8. Haven’t thought this might be
    9. no
    10. Again, a new possiblity

  27. anonymous answers:

    Q1: Insisted on alone time directly after stressful events/social interactions

    Q2: Can’t stop. I even apologize for over-apologizing.

    Q4: I get frightened. I ever leave, shut down and pretend I don’t hear it or sometimes intervene.

    Q5: I future-fantasize, but I don’t future-plan.

    Q6: I don’t and its a nightmare. I read Sink Reflections which is PERFECT for Aspies, ADD-ers & anyone w trouble in this. I follow her plan religiously. My family throw me off and I give up and have to,start over. We had help for awhile but even that was too hard to work out logistically due to executive dysfunction.

    Q7: Yes. Only way to cope is blank out my mind completely, but then everything else suffers.

    Q8: I don’t know.

    Q9: Take singing lessons- it helps with projection, pitch, breath.

    Q10: Fatigue- yes, due to sensory overload; pain- yes, due to not noticing cues till too late, difficulty planning and attending dr appointments, over sensitivity, poor sleep affecting physical recovery

  28. anonymous answers:

    Q1: I stopped being as over critical and learned how to cope with deficits/anxiety, now that I understand where it all comes from. I feel like I’m no longer failing at being a human and that I can actually deal with it whereas before I thought I was pathetic and just didn’t have what it took to survive the real world. Now I know how to deal with areas that give me trouble.

    Q2: I apologize for almost everything and I don’t know how to stop. especially if I feel I’ve broken a social rule or hurt someone, I’m very afraid of rejection or standing out too much.

    Q3: I tell them I just think about the world differently. I prefer to observe and am less comfortable participating because I don’t understand the rules very well. I memorize them but they don’t make sense to me so I’m usually acting or putting on a front. I don’t really tell many people about my diagnoses so I’ve never really experienced this.

    Q4: conflict makes me very uneasy. I can usually handle watching it, I just try to avoid getting involve and get myself out of the situation whenever possible. when it happens to me, I get incredible anxious and find it hard to breather and find words, if I do find words I often physically cannot speak them.

    Q5: I have many ideas about what I want to do but I don’t like to tie myself down. it makes me uncomfortable, I don’t like to plan until I can know everything in advance.

    Q6: I don’t clean until the mess starts to really get under my skin. so sometimes my house stays relatively tidy, sometimes, I notice something green in the shower before I remember to clean it. clutter, dishes, and clothes laying around bother me a lot/more quickly. dusting, vacuuming/sweeping, cleaning bathrooms are harder for me.

    Q7: sometimes, I’m still learning to manage it.

    Q8: yes! I feel sharp pangs in my chest and/or arms when I am distressed (and sometimes when I’m overly happy) and when I’m stressed out or sad I’m very senstive.

    Q9: when I’m distressed I speak quieter, sometimes almsot raspy and much slower, often pausing. most of the time I can speak normal though. if I’m excited I talk way too much/too fast.

    Q10: I’ve had issues off and on with fatigue, sometimes with my lower back, my hips (especially left) and my knee sometimes. I don’t have any other chronic illnesses or anything serious as far as I know. it may but as I was very recently diagnosed I’m still trying to understand how this fully affects me.

  29. anonymous answers:

    Q1: I was able to make strategies for how to deal with meltdowns, and I was able to achieve a greater level of self-care. I’ve also become more self-aware, and more accepting of myself in general.

    Q2: I do this a lot. Sometimes when people are mad about something I have nothing to do with i’ll apologize. Then sometimes people say it’s okay, and that I don’t have to apologize, so I apologize for that….which probably just makes them mad. I don’t really know how to break it other than to like, think really hard about apologizing for apologizing too much to try and beat my reflex but it doesn’t always work.

    Q3: I don’t really talk about this all that much to other people, I’m not really that open about being autistic…I think people kinda passively know, but it isn’t really discussed in any way, shape, or form. Sometimes I describe things to people, like how I have a delay from when I hear things to when they’re processed in my brain (especially when i’m stressed out), and they just look really confused…I don’t really think I pass per se though, because most people do treat me differently, but i don’t know if they’ve put the label of “autistic” to me either.

    Q4: I just walk into another room. I have some amount of issue with this, but I’ve become able to cope with it better since my parents used to fight all the time (and they still do, but it’s notably less than when i was growing up). If it’s in a place where I can’t get away, i do my best to go on my computer and avoid any eye contact or acknowledgement of the argument in front of me because I don’t really know if there’s anything I can say to make the conflict go away or if it’s a conflict that happened for a good reason. In any case, I don’t really feel it’s appropriate for me to get involved with other people’s conflicts.

    Q5: I do. I’m still working the same job that makes me miserable every day (even on the good days). On a good day, I exhaust the majority of my spoons. On a bad day, well….I have like a meltdown a month at work when it gets really really bad. They’re not super severe but it’s definitely a meltdown…

    Q6: I make sure to clean on thursdays. In the past, I used to be really really messy, but then when I saw pictures of all of the really really cool “anime rooms” that have been posted on various places in the internet I aspired to keep my room organized because I really really wanted to have a room like that. I basically make sure that I have places to put everything, and I have a lot of detailed sorted places for where to put my clothes. I have T-shirts in my top dresser drawer, and they’re sorted by type. They go from t-shirts with cool designs, to T-shirts with things from pop culture/media on them, to t-shirts that I got from school, to T-shirts that I got from participating in some sort of event or another. In my middle drawer, I have a lot of skirts. These aren’t really sorted by type of skirt, though i’ve been meaning to do that, but shorts are to the left and skirts are to the right. There’s also a few swimsuits in there because I have no idea where to put them. My bottom drawer is socks. I have a lot of socks because I like to collect socks that I find cute, and I also have to be sure that they feel okay on my feet because if they scratch my feet then they give me a lot of negative sensations and i dont like that.

    In my closet, I have hoodies hung up all the way to the left. Immediately following that are sweaters that are made of knit material (so like, sweaters that look like they were knitted, but I don’t think that any were) and then to the right of that are dressy shirts that I’d probably wear in a business setting or something, and then to the right of that are really casual dresses, and then following that are nicer-looking dresses. To the right of that are corsets and things like that, and to the right of that is cosplay-related stuff. There’s two coats at the end, but I’ve been meaning to move them to the coat closet upstairs because my closet is pretty packed. There’s also a few bins at the bottom for me to put stuff in. In the leftmost bin, there’s a place for me to put dirty clothes. The middle bin is reserved for shirts that aren’t quite t-shirts, but aren’t really dressy either. I’m not 100% sure how to describe shirts like that, but a lot of them are tank tops. To the right is pajamas and leggings. On top of that, there are two more bins, the one to the right containing bras and underwear, and the one to the left containing a lot of pants that I don’t really wear and clothes that I have to give back to people.

    Sorry for infodumping about that, but most of my cleaning relates to putting clothes away. I don’t really make too much of a mess otherwise, since I throw away my wrappers most of the time for food and stuff, and I mostly put my dishes in the sink and when I’m texted to and told to then I’ll do the dishes. When I was living at school there was a bit more complication to this since we didn’t have a dishwasher, so I ended up hoarding a bunch of forks because washing them was a hassle and i think my roommates got mad at me.

    Aside from that, my house is a mess because my mom hoards stuff from thrift stores, but that’s entirely her own problem and there’s not much I can do about it so I try to just not leave my room, which I’m generally pretty good at keeping clean (the biggest problem in regards to that is clothes, since I wash my clothes every week and sometimes I don’t have the energy to put them away right away).

    Q7: Yes I do. I often think that the worst thing is going to happen. I’ve kinda managed it a little by trying to think “well even if that did happen, and it probably won’t even though i think it will, then what’s going to happen then” and sometimes that works but then other times it doesn’t and i get really worked up over it and then i have to calm down.

    Q8: Sometimes. If I cry, then I’ll be a lot more sensitive to light. I had a really bad day at work last week, and for the following day and a half I had to hide under my blanket. On the day following the bad day (which I thankfully had off) I was able to play my 3DS but the computer screen was still too bright…

    I’m not sure if it always happens though. Sometimes I don’t really know how to express grieving properly, even though I feel upset, but I don’t really know what the proper expression for it is.

    Q9: I used to speak too fast as a kid whenever I would do anything enjoyable. Now I’m the opposite, and I talk in a slow voice, and I kinda drag on certain syllables. I have a hard time being aware of my own voice though, and most people don’t really say anything about it to my face so I don’t really have any tips for self-modulation in regards to voice.

    Q10: I’ve experienced some amount of chronic fatigue, but I think that’s related to not getting enough sleep and working a job I hate and being dysthymic rather than my being autistic. Sometimes I’ll be in pain and not really realize it right away until the pain starts to get more severe, though…so if anything I might be a little undersensitive to pain or muscle discomfort?

  30. anonymous answers:

    Q1: I have always known that something about me was different, but I grew up learning to embrace that and to be true to myself. Early on, I realized the difficulties that I have and started working hard to make things easier for myself. Diagnosis has made it much easier to find effective help for those difficulties and also it is easier for me to spot when something is going on with me and I can understand why.

    Q2: I do this pretty frequently, but just becoming more aware of what I am saying and how I am carrying myself can help a lot and totally change how others see me and in return, how I feel about the interaction.

    Q3: I try to explain how most people have a “bypass” for certain sensory information to just go on by without conscious thought and it gets processed for an output, all without actually thinking about it. I have a leaky “bypass” so I think about things that they do not and the response to an input can have other things attached to it that they have a hard time understanding. Example is asking if they are just walking along, can they remember thinking about anything in particular? usually not much, there isn’t a lot of conscious thought. For me, I am almost never on “autopilot”

    Q4: Sometimes I feel compelled to join and help them make peace because I can see things that they can’t because they are “in it”. However, i never know how to approach the topic so I will just get uncomfortable and try to ignore. Not a good way to do it, by the way..

    Q5: I like to live in here and now, it is very comfortable to me and keeps me happy as long as I can remember. I want to be able to do what I feel, but I have realized that things don’t always just appear for you. Everything that I have done so far (I’m 22 years old) has been following what I love as it comes to me. I’ve gotten into trouble but it has always been a good learning experience. The future isn’t anything different from the present because we don’t perceive time in that way. Do something now and when you finish, that is the future where you have accomplished it.

    Q6: I just really enjoy the feeling I get when the house is clean so that is enough to get me to do it. A quick and efficient regimen is indispensable, however. If I have no dishes to cook with or have to step over stuff on the ground or move stuff out of the way to do something, then it is time to clean.

    Q7: I do, mostly when I have put something off for a while and think that I will never be able to do it. I have been trying to pay more attention to what I’m doing and ask if I could be doing something that needs to be done and reassuring myself that “it’s better late than never” and that the world goes on, even if I keep putting things off.

    Q8: Yes, I have a big breakdown pretty much every other month with small ones about every two weeks. If something emotionally unexpected happens, then it sets me off immediately. I think this is because of the lack of being able to properly process emotions, especially ones that are kinda small that I don’t always notice. They all build up to a point and spill over until I’ve cried it all out and feel totally tired and spent. This can last far too long sometimes and the whole process is really confusing. The tactile sensory problems are the most noticeable ones. It affects my being able to put on clothes to go somewhere or getting comfortable in a chair and also affects interactions with my boyfriend. It is really distressing to sometimes have a very negative reaction when he touches me.

    Q9: When I get excited, I get very loud and when I feel bad, I get almost silent. Paying more attention is the best way I’ve found to keep this in check. Also, getting other people to tell me about it.

    Q10: I don’t have any issues with pain, I probably have an under sensitivity to pain. Any fatigue I have would go along with depression.

  31. anonymous answers:

    Q1: I am currently only self diagnosed, but have scheduled to see a phsyciatrist next month for a insight on a professional diagnosis. From the research and obsessive interest in the autism spectrum I find it very comforting to have finally found the answer that I never knew was out there. I have found the light at the end of my tunnel. I am and always have been aspie and although this is who I am and will never change, I feel I can better my life as now I can sometimes catch myself in social situations making someone bored or uncomfortable, or talking too much about my interests they didn’t care to know in the first place and seeming bossy or rude and inconsiderate. I feel I can better adjust my life so that I avoid situations and relationships with people that made me suffer with anxiety so it is more manageable than when I wasn’t able to understand why or where all this was coming from.

    Q2: Yes I do this a lot when I’m stressed and anxious and people get annoyed at how repetitive if is and always tell me, “stop saying you’re sorry!” Or “what are you sorry for?” And I further get confused as I am not sure why I’m just trying to avoid conflict. I have not overcome this. I repetitively ask questions like, “are you mad at me?” Or “do you love me?” To my boyfriend as well, amongst others.

    Q3: This confuses me not sure how to answer.

    Q4: I dislike being around this type of behavior as it’s very uncomfortable and I feel like I don’t know if I should step in or not or if they are angry because I’m somehow without realizing causing a conflict between two other people (perhaps a jealous wife who’s husband unknown to me said something inappropriate after i was trying to be simply polite or nice… Just one example), I don’t like feeling as if both people expect me to choose a side or chime in my opinion when I don’t understand why they are arguing or how serious it is and if I don’t say anything they get mad and say I was a bad friend and didn’t defend them. I hate when people argue. When I was younger, this was absolutely unbearable and I would just start to cry hysterically not knowing how to cope if my parents or kids in school were arguing.
    I suppose as I’ve gotten older (I’m 23 years old) it’s easier for me to find an escape somehow, go in another room, or try to occupy myself with something so I am not as tempted to make a comment about them being loud, etc. and them just getting annoyed thinking I’m being insensitive or nosey.

    Q5: When I was younger, it was easier for me to plan for my future as I always believed my life had a set pattern of rules that I would follow. In middle school I decided I wanted to be a fashion designer as this became my interest and escape. I always planned I would get married in my early twenties after I graduated from a 4 year college (what I as an above average intelligence kid seemed to be expected and encouraged to do) because this is what I thought to be “normal” and “acceptable” and that I would naturally follow starting around age 24 with having children (thought 2 kids seemed “normal” desired amount). I think I scared some boyfriends off because I always wanted to make sure they had the same plan and would bring these things up at the wrong times and in a way they felt I was trying to pressure them into thinking of saying something they didn’t feel comfortable talking about (and still I do this).
    I think my biggest struggle with this is if something happens in my life where my plan gets thrown off course or changed in some way I fall into severe anxiety and stress, worrying and depression and have a hard time being able to move on and find another solution as I believed the original to be fine.

    Q6: I struggle with keeping my own space clean, for example my bedroom or my car, but I can be extremely OCD about shared parts of a household when other people don’t follow certain rules and habits I was taught or prefer (people leaving glasses or dishes out without placing them in a sink or dishwasher, leaving trash out instead of throwing it into the trash can, people that are too lazy to change the trash and stuff the bags resulting in discusting odor, overflow, hard time taking out of trash can, bag breaking, people not flushing the toilet or not replacing toilet paper, etc.) I have a strong intolerance for shared space being out of order and I will be too distracted by the disorder of things that it keeps me from being able to focus on anything else and I tend to come off very bossy and demanding people have said as I feel they should be responsible for picking up after themselves. I don’t like when people think it’s funny or tease me when I tell them to clean it up and if they ask me to do it for them sometimes, or when people say things like “I’ll pick it up later, if you have a problem then do it yourself” or when someone says It was my mess when it wasn’t and I would get upset and cry and refuse to pick up something that wasn’t mine as a child and was told I was being unreasonable or it’s not a big deal by the adult.
    As far as contextual cues I use… I always make a list of cleaning products (always make sure I have on hand) if I run out so I can remember to buy them (this is also true with groceries, etc. lists help me..,) I keep cleaning supplies in the same place together in a designated place of the house where they would be used. For example, anything used in the kitchen under kitchen sink, kitchen drawer has hand towels and paper towels are on the counter easy to access, stuff for bathroom cleaning is placed under bathroom sink etc. I don’t mind doing laundry but I hate folding it or hanging anything up. I like to keep trash bags close to trash can (extra one on bottom of Trashcan under the bag in use.)

    Q7: Absolutely I do. I usually escape through becoming involved in an interest and I usually need to be alone and without distractions.

    Q8: Yes I notice I get backaches and headaches frequently (almost always) due to anxiety and stress. If I have sensory distractions that keep me from being able to think clearly I am told by others to “overreact.” I cried when my hands were wrinkly after a bath as a kid because it physically bothered me so much. I remember sometimes when I would actually hurt myself i would start laughing instead of crying. I have had many times where I get several bruises, or bug bites in summer and do not realize when or why I had them because I didn’t feel any pain. I also sometimes am delayed to reacting to temperatures of water and will wash my hands with freezing cold water or get in the bath to jump out suddenly cause the waters too hot.
    Noises are extremely challenging for me as I feel a constant need to adjust volume based on voice, music, and whether or not I am enjoying the media or not… Some people say songs I like I listen too much too loud, and i change the radio station frequently and I have a hard time listening to something I dislike that someone else I’m with likes. People find this very annoying about me and find it troubling on car rides. I find noises that are in the background troublesome, as well as people talking too loud or I often don’t hear if something is said too fast or if someone asks me something or startles me when I wasn’t expecting it while I’m doing something.
    My eyesight is terrible (nearsighted- can’t see further away) and I am prescribed contact lenses but if I don’t wear them or have one come out I feel I cannot do anything at all and find it very stressful.
    As a child, I was an extremely picky eater. I have gotten a lot more flexible with food considering how dramatic I felt about it as a child. I didn’t want to use silverware that wasn’t the silverware at my house (couldn’t eat anything at a guests house if silverware needed to be used) I never told anyone this was one of the reasons why I just simply refused to eat and would throw a temper tantrum if they forced me to. If food was prepared in any way whatsoever that wasn’t what I was used to, such as grilled cheese with a different kind of bread, cheese, butter vs margarine, or a different brand of cookies or chips or snacks with same flavor, for example, I wouldn’t eat it and have even been told by a childhood friends parent that I rudely stated things like, “I don’t eat YOUR food.”
    Oranges always bothered me, anything orange flavor I dont like. Orange juice with pulp is unbearable for texture reasons.
    I struggled with unspecified eating disorder like obsessions in my late teens until only recently I feel isn’t a problem.
    I sometimes think it’s more painful for me to see someone else hurt themself physically than if I were to hurt myself the same way… If I am bleeding It doesn’t hurt so much as it’s bothersome but if I see someone else bleeding I feel an overwhelming feeling of worry and pain it’s unbearable until the person reassures me they are okay.
    This list could probably go on forever….

    Q9: I am told I speak too loudly and I don’t realize I’m doing so ever until someone tells me I am. I don’t believe I talk at an abnormal pace, although not exactly sure. I have a hard time sensing what my own voice sounds like and although I have lived most of my life in the northeast (United States) I have been told by several people I have a Midwestern accent, and sometimes even asked if I’m from another country as they thought I had a foreign accent.

    Q10: Yes and yes… Puberty and menstral cycle was troublesome for me…, I had to be told by a friend growing up that I was being called “floppy” when I started developing breasts and didn’t notice or bother to want to ask for a bra until my mother took the initiative to take me. The same friend had to bring it to my awareness that my feet would always smell (I would wear shoes with no socks or if I could I preferred to be barefoot) and that I needed to start shaving my armpit hair as I believe I was aware of these changes but embarrassed and confused as to how to ask for help. When I got my period, I knew what it was from school and my mom but I never knew that mine was so much heavier than normal and I just dealt with it assuming this was what it was, dealing with painful cramps that felt like a shooting sensation of someone spontaneously stabbing me with a knife from the inside, resulting in me blacking out going completely blind and passing out suddenly a few times before my mother took me to the doctor and was put on birth control (before having sex) at age 12.
    I have chronic back pain due to stress.

  32. anonymous answers:

    Q1: learning more, and sharing with one new friend who believed me. ( My family didn’t) but this friend has an autistic/ADHD child and suffers from OCD so we are great support partners.

    Q2: I keep my selective mutism. If I don’t know what to say (which is usual) I stay silent.

    Q3: RAGE! Everybody gets mad. It’s just that I get mad at really non sensible things- running water, stirring, footsteps. . . green bananas (instead of yellow) Food sitting out when I’m not hungry. . and things that worry others – Government Shut Down, Threat of loosing a job, mean very little to me. Neither of this is Better/Worse. I should care more about poltics, but I don’t. I leave peaceably without it. I should care less about the little things, but I don’t. It’s just who I am.

    Q4: HUGE issues with this. My dad is a yeller. My mom and Dad argue ALL the time, and I can’t handle it at all. I keep stuff in my hands- books when I was younger- even know with the kindle, ipod, a movie. . something to displace the arguments which are SO painful to me, even though they don’t usally involve me at all. I just can’t handle it. I’m over 30 years old and I’ve never gotten into a fight with a boyfriend. When I’m mad I don’t answer. I stay silent, eventually think through a conflict rationally, but that requires a lot of time and space.

    Q5: I plan the future all the time, but there’s always large gaps. I plan to have a family, always have. . but I’m not sure if I could survive pregnancy, childbirth, marriage or infants. I desperately need a studio apartment to keep my stuff together – in sight so it’s a mangable mess, but I can’t live with my mother because she’s too loud. Apartment living means even MORE neighboors.

    Q6: Can’t do it at all! Dust/Mold/Lysol/Windex and Pinesol sets off allergy/asthma triggers. Vaccum sets off Auditory sensitivity triggers. If I’m hungry enough I wash pots so I can eat – once or twice a week. I have texutal issues with sponges, so I have a wand I can use to clean dishes, and I can put things in the dishwasher and walk away, but I cannot handle the bathroom.

    Q7: Living alone my only catastrophie is clutter caused by clumsiness- as I knock stuff over all the time, and have so many half broken things. Strategies?? I don’t know. In time I get used to it, and will eventually clean it up, but the after effect of my clumsiness which was heightnened by stress in the first place, that’s ugly. My management strategy is walking away and doing something happy- and MGM musical will make me feel happy and forget how horridly clumsy I am. The world is fully of clumsy people and everyone makes mistakes 🙂

    Q8: I suppose I shut down less in a more autistic fashion dealing with grief such as death. I HATE funerals because they are too comfortable, so many strangers and people crying and I just feel horridly helpless, restless and bored. I don’t feel sad. Their death is expected.

    Q9: I always speak too fast, if I speak, because my thoughts run fast. Mostly they run faster than I can speak, that’s why it’s so much easier for me to type than to speak, and that way I can organize. But mostly I’m a selective mute. If it’s important, I will run it through my head many times before I say it aloud, I think that repetition calms me.

    Q10: Chronic illness- Asthma, Allergies, and apparently some Generalized Anxiety. Poor awareness can result in a bad asthma attack, sometimes I feel like I should have seen them coming, should have recognized the signs, or tried to ignore them. Oversensitivity affects my asthma often. I’ve discovered there is a huge link between by sensory processing issues and asthma. When I come across something I don’t know how to deal with. I stop breathing, and I cannot breathe normally until I have inner calm- unfortunately that can be days, weeks, or months later.

  33. anonymous answers:

    Q1: not formally diagnosed yet – got my assessment on 25th Sept (just 6 days off now – shit!)

    Q2: I’ve done this to one degree or another most of my adult/”on-your-own-now, kid” life. However I did go through an uncharacteristic period of devil-may-care defiance several years ago – and in that time the idea of saying sorry for everything and/or nothing much at all just stopped occurring to me. The difference, as I recall it, was that I wasn’t so scared. I think I must’ve experienced a sudden surge of male hormones round that time actually. I was perimenopausal so it seems a not unreasonable theory – plus I remember feeling quite strong and blokey physically as well as mentally.Sadly I’m back saying sorry these days, but it’s less automatic and more of a conscious, pragmatic choice I make – because “sorry” keeps you just that little bit safer in a largely unsafe world. Strewth – what a rambling answer that was!

    Q3: Mostly I don’t. People aren’t interested on the whole.

    Q4: Can’t bear it. I’ve seen a similar reaction going on in several dogs I’ve known. I recognized the pain they felt when humans were shouting and fighting coz I get the same raw, panicky sense of distress myself,- at an instinctive level. Make them stop!

    Q5: I cannot plan ahead.

    Q6: I don’t. I went under long ago. I live alone (not surprisingly!) so wtf.

    Q7: Yes – and, re 2nd part of Q: No, I continue to not manage it at all heroically.

    Q8: Ooh, I think I might – but I’ll need to think on it some more. See, I’d not considered hitherto that X might mean Y + A x B, for example, or that recurring Q pain might in fact be a deferred symptom of chronic inflammatory Zs ….
    Actually, I’m not sure I wanna go there just yet

    Q9: Yes, I think I can sometimes get a bit loud and/or too enthused about this or that. Often it’ can just be my own thought processes that set me off!

    Q10: CFS began creeping up on me about 20 years ago – which is when I first went to see the doc about feeling tired a lot. However it’s become truly debilitating over the past 3 to 4 years and has basically all but robbed the very life out of me. I used to feel sure there was a cure out there somewhere and so, in proper Aspie style, I’d trawl the Internet on marathon miracle hunts that led me off eagerly in a million and one circles (all empty, btw – I know – duh!).But nowadays I’m too tired mostly to even care. I have certain desperate measures I can use when feeling half dead gets too much to bear. But of course, ironically, these may turn out to be what packs me off – suddenly and for the very last time – to the Land Of Eternal Nod.
    Right! Shit! I’m depressing me silly old self now so God knows how you feel reading this morose shite. Thanks – good questions. I loved your book too, by the way – starting from page 1 all over again tomorrow.
    Cheers x

  34. anonymous answers:

    Q1: not diagnosed

    Q2: yes I over-apologize a lot

    Q3: I usually don’t or haven’t tried to describe what being me is like. Let’s see: Being me… I can’t explain it, I like to talk about deep things, not shallow. I have many interest that I enjoy talking about. It is hard to stay organized. I get lost very easy and depend on my GPS in a city. I really have hardly any sense of direction. I am very passionate about God and what He does in my life and others. I look sad all the time, but I’m not, just serious. Sometimes the way I feel does not look like the way I look.

    Q4: I do not like arguments or shouting matches, especially if directed toward me or someone I love. I shut down and forget what it is all about if it’s towards me.

    Q5: yes. I try, but get confused because there are so many options and possibilities and I don’t want to take a wrong turn.

    Q6: I usually don’t in my own house. (my 2 teen girls do) when they are gone the house gets messy. Sometimes I decide to do 10 – 100 things to help me get a job done. I block it out when I get busy though.

    Q7: Sometimes I “freak out” when I have too many things on my list to do and things don’t go as planned or things start going wrong in the morning. I tend to shut down, then I don’t get things done.

    Q8: I’m not sure.

    Q9: I think I usually talk at a normal pace.

    Q10: Yes, chronic fatigue, but probably linked to my gluten-intolerance and low-iron levels and low-thyroid. I feel better since I have been on a GF diet. Sometimes I get overwhelmed emotionally and need to be by myself and that makes me tired.

  35. anonymous answers:

    Q1: I was just happy I knew there was a reason I behaved differently.

    Q2: I do this and wish I didn’t.

    Q3: I have so much trouble with communicating that I explain things in a scientific way and not what it’s like for me as an individual.

    Q4: I am very uncomfortable because of the noise and I don’t understand what’s happening or why. I’m too overstimulated.

    Q5: YES

    Q6: I have a very strong need for careful organization, routines, and “a system”. Things like cleaning have always been a part of those.

    Q7: Not really.

    Q8: I experience sadness as anger and mild frustration as rage and things like that.

    Q9: I do have trouble. It’s very difficult to describe. No tips.

    Q10: HType 3 Ehlers Danlos syndrome (connective tissue disorder), which causes other severe chronic illnesses. My autistic traits ABSOLUTELY affect my response to pain and illness-related emergencies.

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