The One Where We Ask Our Own Questions

In a comment on last Tuesday’s post, Lori from A Quiet Week in the House had a great suggestion: “A thought for your Tuesdays–could you poll your readers? I love reading about other’s perceptions, strengths, and areas of concern. It might be a good way to help others discover coping skills.”

So what do you think, readers? Shall we have a poll?

Wait, before you answer that, let me share something with you that I’ve been wanting to say for a while now. For me, one of the most enjoyable things about blogging is reading your comments. I don’t just mean the “this is great” aspect of the comments, though of course that feels good. More than that, I enjoy when you share your experiences.

I’m just one person. Though I do a lot of research, I write from a very personal perspective. When you read what I’ve written and then share how something affects you, it’s incredibly valuable, not just to me but to everyone else who comes along and reads the post and the comments.

And lots of people do read the comments. What we’re doing here–and I really do mean we as a group–is creating a rich, detailed account of what it means to be an autistic adult. We’re learning from each other and we’re creating something for the hundreds of silent readers who find this blog looking for information on some subject or other.

The Poll

So, the poll. Do you have a question you’ve always wanted to ask other autistic people? It could be something practical like, “how do you cope with _______.” It could be something you’ve noticed in yourself and wonder if others experience. Maybe you’re curious about favorite special interests or stims or stim toys. Maybe you have a tough thing you’re facing in life and want to know if others have dealt with it in the past.

Here’s what we’ll do:

1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but I don’t want the survey to be too ginormous for us to answer.

2. I’ll collect the questions into survey format.

3. I’ll post the survey next Tuesday and we’ll answer then. I want this to be fun and not a lot of work, so let’s plan to answer as many or as few questions as we want. No pressure.

There are two ways I can set up the survey:

  1. If you prefer to answer anonymously, I can create a Survey Monkey survey that we can answer without revealing our identities. I can then bring the answers back here in the form of a post, with all answers kept anonymous. We may get more answers this way. 
  2. I can post the questions and we can answer in the comments. We may get more trustworthy answers with this option and we’d be able to ask follow-up questions (within reason, of course).

Let me know which option you prefer. Majority rules.

Anything I’m missing? Mostly, I want this to be fun and informative and not like homework for you.

ETA: Don’t be shy about adding more questions. If there end up being a lot, I can split them up over two or more weeks to keep things manageable.

64 thoughts on “The One Where We Ask Our Own Questions”

      1. Does anyone else have trouble with “future planning”? I rarely think past what I have coming up in the next few months. When someone asks me what my plans are for next year? 5 years? retirement? I don’t have an answer and I can’t come up with one. I honestly never think about it. It frustrates a lot of my peers/significant other/family because I can’t even come up with plans for lunch because I just finished breakfast and I have no idea what I will want to do for lunch. So, I was curious if planning for the far future or sometimes even the near future is a problem for anyone else.

  1. Hey, Musings!

    I really have to agree with you about the comments. I really enjoy reading both people’s comments on other people’s posts, because they’re usually both interesting and helpful, or at the very least one or the other, and comments by other people on my own posts.

    I didn’t vote regarding the survey… mostly because I don’t care which. If you’d really like me to, just let me know, and I’ll officially vote for the comments one.

    One of the most pressing concerns on my mind at the moment is: How do you cope with parents who care, and are taking care of you (or at least helping you work on taking care of yourself), but don’t *understand* you? Don’t have the conception of how hard it can be to do things, like work on not taking naps when you end up exhausted, or deal with financial stuff, or do job searching, or talk on the telephone? Don’t understand that you *can’t* do certain things, and worry about hypochondria and such when you complain that your sensory system seems to be more hyper-sensitive than ever? Things like that. That’s the *Big* one.

    Another question: Does anyone else in the adult autistic blog-munity (other than myself and Unstrange Mind) have issues with temperature sensitivity? If (like me) you have issues with heat, how do you cope with summer weather? With the effects of exercise? With the effects of having to wear cold-weather gear in the winter and walking anywhere? (My answers: A- I hide in the basement, and try not to go outside; B- Um… I don’t, not well, and I have issues with exercise quite often, since I sometimes tend to be low-iron anemic; C- Again, I don’t cope well; I tend to mostly wear short sleeves, and when my hair is long put it up whenever I sweat….)

    A second *Big* question: For those who have hyper-sensitivity to light and sound: How do you cope when you find yourself starting to get overwhelmed, but can’t leave immediately? (Whether because you have to finish doing something, or your ride isn’t available, or there isn’t a place that you can get away from it all….) How do you recognize when you’re starting to hit that point of sensory overload? How do you deal with the aftereffects of the overload – and what aftereffects do you notice? How long can it take to deal with the aftereffects? (My answers: A- I don’t. Cope, that is. My most recent experience with this where I actually realized what was going on, I resorted to an old stim of mine that my parents stopped when I was a young child, chewing on my right index finger (between the nail and the knuckle). I then found it bleeding slightly when I got back to the car, where my teeth had worried at the skin a bit too much. It’s almost fully healed again now; I can barely see the marks of the two teeth that broke the skin. My only other way of “dealing” with it is to shove it all off to a corner of my mind and avoid it; which is *not* a healthy coping mechanism at all, and has resulted in a number of psychosomatic complaints over the years. B- Part of my problem is that I don’t seem to be able to identify that tipping point, which is part of why I’m looking for answers from other people, and Musings, why I think this is such a *good* idea. C & D- Headaches, need to be alone, need to be someplace dark and quiet, need to sleep… and I’ve been having a lot of trouble dealing with those aftereffects and actually getting past them.)

    Okay, those are the ones I really want / need answered at the moment, the ones that will help me deal with my life in better ways. I’m sure there’s more, and I’m sure a lot of the rest of you will come up with questions that will help me as well (as your comments and own posts have helped me over the past 2-1/2 months since I first discovered the blog-munity).

    Musings, thanks for this post, and this idea. Hope my comments are not too long!

    😉 tagAught

    1. Not too long at all, though I’ll probably shorten the questions a bit when I post them in survey form next week so that people can quickly get the gist of what you’re asking. I can also reference people back to your comment for more details too, so that the background your provided is available. I’m very curious about the answers to your first question, because reasons. 🙂

    2. lol tagAught I read “blog-munity” as “Blog-MUTINY” HA! (Off subject but amused me…i think it is fitting.)

  2. Does anyone find that you really long for close friendships so much? I’m not diagnosed yet. Does anyone obsess over someone you’ve just met? ( almost like they become your ‘special interest’ )

    1. I know my husband & son have an ASD . My son diagnosed PDDNOS . My hubbie very obvious . Now it’s me. Defiantly not nuraltypical. I am so Aspie .
      Question ; anyone found a Aspie married couple? This is us for sure for us .

  3. If you have a photographic memory, how do you cope with physical locations becoming crowded with all of the history? I can’t buy a tomato without remembering that I bought garlic last time I was at that store and the time before I was looking for milk but they didn’t have any and the time before that and the time before that.

    How do you get a job if you can’t use the telephone? Where I live, you have to put your phone number on your application and they will call you if you get an interview, but I can’t understand anything someone says over the phone.

    How do you stay on top of cleaning? What contextual cues do you use to get you to do things around the house? I have some that are helpful to me that I’ve discussed in comments here before but I’m always looking for new ones.

    Does anyone else use echolaelia to learn foreign languages?

    What texture sensitivities do you have? What specific textures are bad? How does your body react to them? I’m asking because I see a lot of oral stuff for texture sensitivities, and I have those too but my main ones are with stuff touching my skin, and also I recently read a blog post where an autistic person was talking about texture sensitivities and recommending good textures for “fellow people with texture sensitivities” but the stuff they were recommending were my bad textures and I got really antsy just thinking about touching the things she was talking about so now I want to know if everyone else has the same sensitivities or at least if there are certain textures that are more commonly liked/disliked. (I mean it’s great they were recommending things to touch for people who enjoy those textures and i didn’t comment because not every blog post by a stranger has to be about me and the textures i like and dislike but boy howdy do i not want to touch those things never ever)

    what stuff have you learned about interacting with other people that you think is important to know but was not obvious to you at first?

    Why is stimming such a big deal? NTs do things for sensory pleasure all the time: baths, rollercoasters, watching movies, kissing, most hobbies, making food they like to eat, wearing perfumes they like the smell of, choosing comfortable pyjamas. My cat stims all day long with anything he can find that captures his interest: bottle caps, straws, hair ties. What’s wrong with liking the way my hands sound and the way my fingers feel when they move against each other? How is that different from liking the smell of vanilla and choosing to burn a vanilla scented candle when a person has perfectly good electric lighting they could be using instead?

    If you like numbers, what’s your favourite number game?

    1. I don’t have a photographic memory, but I’ve always been curious about how people cope with having one. I’m adding these to the list in shortened form and will link back to your comment so people can see your contextual background information.

    2. I thought of another question.

      Do you have trouble speaking at a normal pace? Do you have any tips for modulating your voice? My spontaneous speech is really slow, maybe about 100 words per minute. I can speak stuff I have memorised at a faster, more normal rate.

  4. You know how much I love Take a Test Tuesday so it was odd but fun to discover the birth of Ask a Question/Give an Answer Tuesday instead.

    I think this is a great idea because I have often got questions to ask and don’t quite know where to go to ask them. The ones that have already been posted are really interesting.

    So, here are my questions, they are generally aimed at people who have had an adult diagnosis:
    1. How has your partner (if you have one) reacted to your late diagnosis and do they now see you as ‘disabled?’
    2. After my diagnosis I started using ear-plugs in public, which has revolutionised my life by increasing my well-being and making me less stressed. What positive changes did you make to your life after your diagnosis?
    3. Do your friends and family ask you about your diagnosis? Do you feel supported by them?
    4. Do you ever feel ashamed to be autistic/technically disabled/different? Especially after spending a big chunk of your life as a ‘normal’ person?
    5. Apparently, most people feel that their inner self has a particular age unrelated to their chronological age. How old are you inside? Are you older or younger than when you were a child?
    6. Bras. Do you also find them very stressful to wear? If so, have you come up with a solution to that?
    7. Shoes. Do you have difficulty finding comfortable shoes? What is your preferred choice of footwear?
    8. (Final one – for the moment!) Does anyone else find showers almost physically painful?

  5. I’m thrashed after a day testifying in court (oh, yeah, REAL FUN for an Aspie, fer sure, those vague, indirect questions from the other side’s attorney, or the ones which are not exact but which you have to respond “yes” or “no” to), but my response to you is yes, yes, yes, let’s do it. That is about all I can manage just now, but I’ll try to come up with a question or two in the next day or so.

    1. Wow, that doesn’t sound like a fun day at all. I”m dying of curiosity about whether you’re an expert witness or what capacity you were testifying in, but feel free to tell me to mind my own business. 🙂

      Looking forward to your questions – I’ll compile everything next Monday so there’s no rush.

  6. This is such a fantastic idea, and loads of great questions have already been asked. Here’s my contribution:
    1.) Does anyone else have issues with conflict/arguments/shouting matches in front of you? How do you deal with this?
    2.) Do you all experience a lot of double standards regarding your autism, and how do you deal with this? For instance, it annoys me so much that an NT person can move their hands around, fiddle with clothing etc, but when I do it, it’s stimming and therefore A Bad Thing in the eyes of others. Also, there are those conversations where everyone’s talking over each other and interrupting, but when I as much as start at the same time as someone else, it’s automatically poor social skills on my part so I basically have to shut up.

    I’m sure I’ll think of more at some point. 🙂

  7. Another one – 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?

  8. How common is synesthesia among autistics? I have a form of it where I sense color with emotions or sensations, such as blue is calmness, red is anger, yellow is happiness, green is coolness, etc. I don’t actually see the color, I feel the color. I also sense color with people. You can describe it as me being able to sense their aura. My son’s psychologist is a very warm and friendly person. I sense a light pink around her. I also taste certain colors, such as bright pink is sweet and with certain greens I taste a cucumber flavor or minty flavor. Every time I see red and white together I taste peppermint.

    1. Oh my god. It’s not just me. This made me feel so much better. I have it too, but it’s not a typical type of synesthesia because it’s all “feeling”. Some places, for example, “feel too green” or etc. And some people feel too [insert color combination]. Hot cocoa feels like red and purple and orange and green when it’s made correctly. Seeing orange and yellow together makes me taste citrus. Etc.

  9. I have a couple more questions if you are interested:
    1. If you work, how do you cope with your errors in understanding they way that most humans think and behave, not just non-verbal language, but office politics and simillar inexplicable behaviours?
    2. Do you catastrophise and if so, have you strategies for managing it?
    3. Do you have autistic friends and if so, is it easier to hang with them rather than neurotypical folk?
    4. What is your favourite thing about being autistic?
    5. What cool thing about being autistic do you wish that neurotypical people could experience?
    6 What is your autistic superpower? (data processing, attention to detail, math, super-concentration, beautiful flapping, lucid dreaming, synasthesia etc)
    7. If you could be neurotypical, would you want to be?

  10. I have a couple of questions related to work.
    1. I get very anxious about interviews – what strategies do you have to cope with these?
    2. How do you deal with being bullied at work? (or anywhere else)

  11. I thought of another one and I’m probably going to be coming back to this post again and again over the next few days to add more. I’m having some trouble with work right now that has had me very discombobulated and I can’t think straight very well at this time.

    I have been trying to explain to my boyfriend why I get so annoyed when he interrupts me when I’m in the middle of doing something. I have even tried doing verbal stream-of-conscious talking while I’m doing something but my thoughts go so fast when I’m working and concentrating that I can’t truly convey what it is that I’m thinking and why it disturbs me so badly when he interrupts me for something that could wait a few minutes for me to at least reach a “stopping point”. 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? Am I just not verbalizing myself to him clearly enough?

    Also, what about the times that you don’t feel like having physical interactions with anyone? You don’t want hugs, kisses, or even simple touches. I am usually overwhelmed with sensory stuff at that point (auditory, visual, touch, taste, the whole mess) and I have trouble articulating it. Should I wait until I’m not in a crisis and try to describe these things to others in a way they might understand better? I have so many things going on all at once usually and I can’t concentrate on what to tell the other person to make them understand that I can’t handle anymore without biting someone’s head off. I know I’ve hurt people’s feelings/pissed people off because I’ve refused interation with them because I’m overloaded.

    The question above about knowing when you’ve reached your threshold is a wonderful one because I still can’t tell exactly when I’m reaching mine until it’s too late.

    1. Feel free to come back at your leisure and leave more. I’m definitely going to spread the questions out over more than one Tuesday because there are so many and they’re all very good. I want everyone to have a chance at getting some answers/answering as many as they wish to.

  12. I love the community spirit and interactiveness of this blog, and reading other readers’ comments definitely ads to the insights. The poll idea is great , and a great way to drive/inspire new posts…

    (As long as it is open/qualitative questions, such as asking for peoples’ experiences / thoughts / ideas /inputs, because any sort of numeric comparisons would be pointless since the random selection criteria for Statistics isn’t met)

        1. I think for now it’s going to be a one time thing, though it’s going to be spread out over at least two weeks because there are so many questions. Then again, it could be an occasional thing if people really like it.

  13. Thanks for mentioning how much you welcome comments. It’s quite a relief actually. I like mentioning my experiences where they are related to the main theme of the post, but I’m also very conscious of not wanting to overwhelm the post OR the comment thread, by entering into a diatribe. I enjoy commenting on your posts because I find so much resonance with your experiences and perspectives.

    1. I really enjoying reading everyone’s experiences and I know others do too. When I write about something, I know that some people feel like they can really relate to it and others will share how their experience is different. It’s educational for me to read both types of responses so I like to encourage folks to contribute when they have something relevant to add.

  14. I have two questions!
    1. About sensory issues, how did you react to a overload(sorry if it’s unclear, I’m not sure about the word), and did you know at first why you reacted this way? Or was it simply a reaction without really know why you were annoyed/angry/overreacting?
    2. How many of us here find earplugs and Mp3 player to be important when going out? Does the stress level goes up when you can’t have it on when being stuck in crowed or noisy places?

    I wanted to add another one on temperature issues (summers are HELL), but it was already in the first comment.

  15. This is interesting, because I’ve been thinking of setting up an extensive self-reporting survey of adults on the spectrum, something that would be ongoing and built by autists to give us information about us and possibly as a resource for research. The data collected would be anonymised and open access. Anyone interested in helping out?

  16. Anyway, my starting questions would be:
    1. Has anyone been disowned by their family at diagnosis?
    2. How often do you hear someone use autistic as a pejorative?
    3. Do you have hyperfocus? Do you like it? How long do you focus for, on average?
    4. Do you regard yourself as hyperlexic?
    5. Do you think in words?
    6. Can you understand the body language of animals?
    7. What kind of job would be right for your own ‘brand’ of autism?

  17. Oh dear I really am hopelessly behind on commenting here! I really like this idea for setting our own test questions 🙂

    Asking questions about some of my pet intersectionality research interests and things that I’ve read are significantly more common among autistic people…

    How do you relate to gender? What is your understanding of the word/concept?

    Has there been a point in your life when you felt that you wanted to be, or were meant to be, a gender different to the one you were raised as? (If so, why do you think this was, how old were you, how long did this last?)

    Do you currently believe in or follow gender roles and stereotypes? (for example, roles/rules about how you’re meant to dress and present yourself, what interests you’re meant to have, how assertive/emotional/nurturing/etc you’re supposed to be, what role you’re supposed to take in personal and professional relationships, etc)

    If you are some variety of transgender or answered that you’re gender nonconformist in some way, do you think that this is in any way related to your autistic traits? Do you think you ‘do gender’ or ‘do transgender’ differently to other people because you’re autistic?

    Is your sexuality, romantic orientation or preferred relationship structure different from our cultural norms in some way? If so how does this differ and do you think this is related to your being autistic?

    Before you realised you were autistic did you ever understand yourself as being somehow not human or not from your culture of birth? (e.g. an alien from the wrong planet or born into the wrong country, century or species etc)

    Have you ever had any difficulties with your self image, if so how did these manifest? (such as physical/bodily gender dysphoria, body dysmorphia, eating disorders)

    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?

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

    (I realise that most of the above are of an extremely personal nature and don’t expect anyone to feel pressured to answer any of them or any part of them if they don’t feel comfortable doing so).

    Thanks for organising and collating all of this!

    1. Oh I thought of another one…

      Do you have childish or otherwise ‘age inappropriate’ interests or did you at an earlier point in life, such as during your teenage years?

    2. I like many of these questions, including the additional question about age appropriate interests… I hope they’ll be coming up in one of the surveys.

      (The one with chronic fatigue is already, but I haven’t seen the other ones)

      1. They’re all included in the upcoming survey posts. 🙂 I had to add a separate category for gender/sexuality/body image questions and extend the survey for one more week to get everything in.

  18. I can identify with so many of these things. Im so amazed that I have discovered other people who can verbalize these things!!!
    So, here’s one that I commonly deal with
    …Does anyone have a problem with ‘creative’ overload?
    Everytime I walk out the door I am met with something that stimulates me creatively. I have 20 pictures of an unusual & interesting moth I saw in my shop which I would like to do a series of paintings of. But things as mundane to others as cloud patterns or the particular shadows being cast by a tree at that precise moment are fascinating to me. Also textures. For some reason it annoys people Im with when I want to touch things. I always thought this was a trait of being artistic – but apparently its a trait of being AUtistic … lol Meanwhile, I love my phone camera bc now I can take pictures of textures – for example a cool.gnarly tree I saw and exasperated my daughter with bc I had to get out of the truck and touch it …
    Dont get me started on going to new places bc I take in so much stuff – I recently went to NYC … talk about creative overload – I took so.many pictures of texture, and architecture of old buildings or cool hardware on a door, so interesting. My oldest daughterfrustrates me bc she will not slow down for me to look and think … she just says ‘c’mon mom we gotta keep movin – you cant stop at everything … blah blah blah…
    I have only begun to realize how hard I work at trying to NOT look at and experience everything of interest to me so as not to make everyone mad or put-out with me. In order to comply with some of the schedules we had in NYC I simply stared at the sidewalk as much as possible so I could walk as fast and keep up. Every time I lifted my head I was assaulted with something brilliant immediately wether architecture or some tree or pattern or colour or some combination of colour – there are a lot of AWESOME murals too and I SO want to be able to do one there!!!
    So everything I see inspires me to create art, or holds some mesmerizing appeal.
    Also, sometimes when I try to sleep I get fleeting pictures or ideas in my head so I keep a sketch pad right by my bed – this I had to learn to do in order to rid myself of all the details bc otherwise I sit and think of them.
    Also, does anyone imagine making something right down to the most minute details? I can spend hours on such technicalities.
    … Im sorry if Im rambling and I apologize in advance for typos. They are impossible to avoid due to my use of a phone to access this site.
    Thanks for your patience & time to read this.

    1. I do this too. But I don’t really see it as overload. It’s just so highly enjoyable. It doesn’t wear me out, it doesn’t make me anxious or stressed, it doesn’t cause any problems for me like other types of sensory overload. It only causes problems for others, who refuse to participate in my joy or understand the reasons for it. Why should I always be on THEIR schedule? Let me wander around, taking in the colours and patterns and textures. It’s what I love.

    2. In fact, I’ve started playing this mobile game where going out and walking around taking pictures of interesting and fascinating things is actually one of the main goals. I’ve noticed that most people tend to focus on the gameplay (gaining points, earning badges, getting into the top 10, that sort of thing), but for me it is all about discovering beautiful things. I create my own enjoyment. Why should I feel bad or apologetic for not playing in the way most people play, when it’s giving me so much joy?

Share Your Thoughts

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s