Autism & Internet Usage Survey

ETA: Several people have brought up concerns with this survey in the comments, including the AQ test that is at the end. You may want to check the concerns in the comments before deciding if you want to take the survey.

I am an active autistic self-advocate and autism researcher (PhD student, educational psychology). I was wondering if you could take or pass on an autism spectrum-related online research survey I helped to develop?

It received full ethical approval from the review board and contains
consents within it. I think it is sensitively written and it is open to feedback.

The survey is examining the relationship between the autism spectrum and Internet use, identity, and visual perception. Please note that scores are completely anonymous and it’s for any adult or child of at least 7 years in age.

We especially need people who are diagnosed on and/or self-identify as on the autism spectrum. Participants can get help in completing it if needed.

Here’s the link: Survey Monkey Website

It might take about 15 minutes.

33 thoughts on “Autism & Internet Usage Survey

  1. warning: for some reason they end the survey with the AQ test, which in my opinion SUCKS. I have a feeling that I wasted time doing the survey because now they’re going to think I’m not really asd if I don’t get a high enough AQ.

  2. Yeah, I had a hard time with that, too. I almost didn’t finish the survey because of it. However, there is space to comment about the survey itself, so anyone who dislikes the AQ test—which I personally find very simplistic, and based on stereotypes, and outmoded, and I could go on, but I won’t—can let the researchers know it.

  3. Yeah, I did raise an eyebrow at that (part of) the AQ test. It wasn’t very good years ago and it’s just as bad now (and it’s not because I don’t ‘score autistic’ on it, because I very much do). Have to wonder what the use of including it is, but I don’t really know what kind of interpretations and conclusions they want to draw from the survey. I’m not entirely at ease with it.

    I know that if the AQ test had been at the beginning I would have stopped the survey right there (which may be why it’s at the end :P).

  4. No idea why they felt the picture-matching was necessary but it was completely out/place with the rest of the survey and IMO grossly insulting.

  5. Thank you for the warning, AWV. I read the rss feed of FWD, so I had already answered the survey before coming here. The AQ test upset me, and I complained about it in a comment at the end of the survey.

    I tried to explain what was wrong with the test, but I’ve deleted what I wrote several times. I don’t like feeling like I have to explain myself or put myself into a neurotypical context and in effect Other myself in order for others to believe my self-identification.

    I didn’t like the “is this easy/difficult for you” questions, because the true answer is that that depends on the circumstances and which people I’m dealing with and how I’m feeling, but the answer the test is looking for is if I have to work harder at it than a neurotypical person, and I get the feeling that there is a penalty for having good coping mechanisms.

    I didn’t like the “are your interests obsessive and number and system oriented enough” questions. Why can’t the test ask how I perceive my hobby compared to how I perceive activities I’m forced to do, and how I use my hobby, and what it means to me? Again there’s this subtext of my interests only being important for how freaky they are compared to “normal people”‘s interests, and the test completely ignores how a preference for systematizing can be applied to any sort of interest, not just license plates and trains.

  6. Oh my gosh, I’m so sorry everyone. I didn’t take the test because I’m not autistic, and no doubt wouldn’t have picked up on the issues you’re raising here. I’ll edit the post to point these issues out, and I really appreciate you bringing them up!

  7. I don’t think you should be sorry! It was an interesting survey. I was just really weirded out by the picture-matching and the AQ test and it made me worry that it might have been one of those surveys that pretends to be about one thing and is actually about another.

    I just think it’s unfortunate that someone who identifies as an “autistic self-advocate” doesn’t realize how much that survey sucks. As I think Sarah pointed out in the past, museums and theaters do not have to do with disability.

  8. I do want to note, for the reference of people debating whether they want to take the survey or not, that there is an option to opt out of the survey before hitting the AQ test–folks who don’t want to take it can choose the option to not continue when they reach that point.

  9. @S. E. Smith

    Sure, you could opt out before you got to that section but usually what happens when you get a half-completed survey as a researcher is you just throw the data point out entirely. Skipping one question is one thing (IIRC Survey Monkey is annoying in not allowing you to do that) but stopping halfway through…

    I’m going to opt-out of this survey. I’m very uncomfortable with the AQ test myself and, quite frankly, if you’re a doctoral student and autistic you should know better…

  10. The pictures and AQ test weren’t the only things I thought could be done better (in the case of the IQ test I can’t really see what purpose it serves no matter which way I look at it). And with all of it, I wonder what kind of conclusions they want to draw from their data. I might have more or less of a problem with the survey based on what it is they are trying to get from the answers, because some things they could try to do are a lot more dependent on interpretation than other things. And other stuff. Not really expressing myself well.

  11. I took the whole thing, and found the AQ part utterly baffling at the end. The pictures part was weird, but I figured it has to do with looking for details vs gestalt, which is such a common theme in autism research (and so utterly bogus) that it didn’t feel out of place. Somewhat ironically, because I do tend to focus on the details, I’d forgotten about each part that bothered me by the time I was at the next part that bothered me. I did complain about the inclusion of the incredibly sexist AQ at the end, though.

  12. Maybe they included the AQ test b/c they are hypothesizing that ppl who “show up” as autistic via other indicators (the other questions), may not always “show up” as autistic according to the AQ? The underlying basis for the inclusion of the AQ could be that the researcher shares these critiques and is undertaking this study to highlight the very issues brought up here? I could be totally wrong, but that’s what I was thinking.

  13. Interesting how some of you felt about the picture matching. That was actually my favorite part of the test. It didn’t occur to me at the time that it might be used to bolster the “weak central coherence” BS. I figured it was about whether most autists think visually, but then again, I’ve stopped with the pathologizing already, so I’m prone to forgetting that another autist might still be thinking in terms of deficits. I’ve always liked those games where you have to figure out what’s different between two pictures, so I kind of got lost in the fun…

  14. I actually know and am friends with the researcher who put together this survey, and have pointed hir in the direction of this thread. The points people brought up are very valid.

  15. ha I think the weak central coherence thing is totally true thing for me–I didn’t really realize that was a contested thing. do you have links to blog posts about it or anything?

  16. Hello, I think I understand the perspectives articulated here and I might feel similarly if I didn’t have inside information regarding the survey’s purpose and our intentions. Here’s the first part of my response:

    I have long known about the strong feelings against the AQ. Part of it is that it was designed by Baron-Cohen, who has done more than any researcher in recent times to dehumanize and pathologize autistics. He claims autistics are evolutionarily inferior – that “theory of mind” (ToM) is core to being human and has evolved to make us superior to animals, but autistics lack it. NTs have ToM deficits in relation to autistics and to anyone who is significantly different or unfamiliar (minority groups, etc.). Unfortunately, human beings are naturally less knowledgeable about and more likely to distrust/be fearful of those who are unfamiliar or different.

    And autistic people are NOT “deficient” in relation to NTs in terms of empathy. Empathy is feeling for someone, separete from the ability to understand anothers’ thoughts, feelings, and intentions; questionnaire, experimental, and neurological research proves this. When autistic people understand another person’s perspective, we are just as empathic, sensitive, caring – we are proven to have more distress for others’ distress actually (Bird…Frith, 2010). We have difficulties with understanding NTs’ perspective such that from their perspective we appear to SHOW less empathy.

    The “extreme male brain” theory is also deeply offensive. Autism goes against much of the correlations with testosterone and male stereotypes, and girls are extremely underdiagnosed, at least among children and teens. We have about 175 pariticpants so far and the clear majority are girls. e have 170 autistic participants so far and about half are girls. I think this in large part because most respondents have been adults, and autism is often appears much subtler in girls and they are much more likely to go unrecognized to NTs for longer because of various factors, but are much more likely to get diagnosed (self-diagnosis and/or formally) by adulthood (such as having an autistic kid and noticing similarities).

    Anyway, Baron-Cohen has made so many presumptions without good evidence, against autistic people – just like the deficit-based medical model that wants to “prevent” and cure people who are different. Similarly, his fetal autism studies could lead to prenatal testings and the option to abort fetuses that might be autistic.

    Steven Kapp

  17. Thank you for the feedback about the survey I helped to design. Here’s some information about the survey methods and intentions (I say “our” but I did not design most of the survey, including these parts, but have given significant feedback. Most of the survey was designed when I found out about it and only so many changes would be made at that point. So if you have more specific questions, I can gladly direct you to the main person who designed it.)

    The AQ measures traits that are fully continuous into the general population, not deficits (it measures tendencies or preferences, not inability). People can score a 50 and have a great social life – married, friends, good job, etc. – and be happy. It’s definitely not a perfect measure and I cans see that it might appear very stigmatizing though. We are interested in how personality traits associated with being autistic or not – literally everyone at least 7 was eligible to take this survey – might relate to autistic culture and strengths in visual perception (yes, the pictures are related to visual strengths that many autistics have). It’s possible these differences and activities relate to one another, but maybe not – hence the research.

    We are sensitive to concerns about the AQ and everything else that relate to the disconnect between autistics and “mainstream” NT-dominated communities. We definitely plan to include such feedback from autistics in the paper we plan to write and make clear that researchers need to be more sensitive, understanding, and respectful toward autistics’ and other groups’ ways of being and views.

  18. I thought the pictures were fun too, and I also assumed they had something to do with thinking in pictures vs thinking in words. Weak central coherence theory never even occurred to me. I tend to forget about it, since it seems like such bs to me.

  19. I agree, the theory does look like B.S. The creator of weak central coherence theory (late 80’s), Uta Frith, has actually basically rescinded that theory in favor of a “detail-focused cognitive style” without deficit (Happe & Frith, 2006). Similarly, she claimed that autistics lacked empathy and was Simon Baron-Cohen’s mentor on the infamous first autism theory of mind paper, but now says there is no deficit in empathy. Again, clearly most researchers have been biased toward presuming deficits, but we autistics have proven to be more capable than they thought, and disabled by the social context.

  20. all disabled people are disabled by the social context, it’s hardly just us.

    anyway, I would like someone to explain why the “weak central coherence” theory is BS (especially because “detail-focused cognitive style” just seems like a nice way of saying that). I’m not trying to get in an argument with anyone, but every description of “weak central coherence” I’ve read is pretty much exactly the kind of thing I have a huge amount of trouble with and worry about my ability to live independently because of. I mean, do people just have a problem with it because it sounds negative and they want it rephrased?

    I know this isn’t on topic so if someone wants to just comment on one of the posts on my blog and explain why “weak central coherence” is offensive or seems wrong to them, I’d appreciate it. Maybe I don’t understand what I’ve read/been exposed to about it.

  21. (sorry, the order in which those appeared makes it look like I’m ignoring Rachel’s post, but in fact it wasn’t there when I posted. thank you for the link.)

  22. From what I understand, the weak central coherence theory posits that autists can see small details but not the larger pattern/picture. The problem, in my experience, is that it sets up the same, tired, either-or dichotomy that affects so much of autism “research”: the idea that if you are great with details, you must be unable to see the larger picture, and conversely, that if you can see the big picture, you can’t see the small details.

    I can do both at once. I have difficulty with things like sequencing tasks in real time, like trying to get several courses of a meal to come out at once, mainly because I have to work so hard to filter out other sensory experiences while I’m doing it; but if I can write things down, and figure them out in words and visuals, I can get the larger pattern just fine. If I wanted to cook a meal of several courses, I would have to figure it all out on paper first, but I’d get there. It’s just not something I’m that interested in putting the time into. And if I’m just looking at something visually, I can see several patterns at once, depending on how I look at it. I’m quite expert at anything involving design and organization. I tend to arrive at central coherence associatively and intuitively, and it’s always worked fine for me.

    I think a lot of the tests for central coherence are auditory and verbal, which is something that autists tend to have difficulties with, so the tests don’t arrive at the way in which we can actually see the big picture, ie visually and via the printed word.

    I’m not saying that all autistics are great at tasks involving central coherence. I’m just arguing against weak central coherence being a central and defining feature of autism–especially since non-autistics tend to miss the big picture an awful lot of the time.

  23. Maybe it is different for other people. I just would benefit personally from autism being seen that way I guess.

    I can do stuff for myself kind of. It’s not that my mind is literally unable to ever do it the way I’m unable to grow wings and fly. But the amount of thought and emotional effort it takes to do the necessary stuff to look after myself in an unsupported, unscheduled environment is just really really big, to the extent that when I’m in that kind of situation I feel incredibly exhausted and depressed, and don’t have any energy left for things that are hard but might be worth doing, like trying to cook something different, or making new friends, or trying out other new experiences.

    The problem is I feel like people think of autism as being a mainly social issue, if someone is verbal, and especially if someone is passing or semi-passing, like I am. So I feel really hopeless about the idea of getting any kind of services ever, well I guess services would suck anyway even if people did understand, but seriously just even having people understand what a big problem these things are for me would be pretty amazing. As it is I feel like I just have to cover, or find ways to help myself that look like something a normal person would do, because people won’t understand why I can’t do it.

    I’m not trying to not listen/ignore your point of view and I do respect your writing a lot and I understand if it’s not a problem for you. But I guess I feel heavily affected by something that is, for me, in practical terms, a deficit (even if it might make me good at some things I do for fun). The idea of framing it in more positive or neutral terms is something I can get behind for reasons of showing the social construction of disability, but I guess…well, it’s just that in the real world it is a huge problem for me and some other people.

    Sorry if I’m coming off as a jerk.

  24. To reinforce untowardlady, the consent form explicitly stated that if one opted-out of the survey at any point, one’s entire survey would be thrown out. So placing the objectionable items (from my point of view) at/near the end magnified the problem: my time and opinions, which I gave in good faith, are from my perspective suddenly held hostage for my participitation in (what I saw as*) a demeaning exercise designed to see if I was “really” autistic. Not cool, Steven et al.

    Re not-autistic-so-not-participating: I thought the survey was for everyone and sought to compare autie and non-autie data. Respectfully suggest taking the surveys one posts in future.

    *My perspective is that of one who has been through mandatory hoop-jumping sessions of that nature for most of xyr child & teen years, and now that xe is an adult believes that xe need no longer justify xyr diagnosis. I have fought that fight quite enough, thank you, and for me it ceased to be fun some time ago. Glad that others can still enjoy it, and they can have my portion.

  25. I did not design the consent form (nor most of the survey), which is required for standard protocol (Internal Review Board), but we are going out of our way to constantly revise the survey based on people’s comments, which few researchers do.

    As for who is counted as autistic, that has NOTHING to do with the AQ. What determines whether we count someone as on the spectrum is if they identify as such (“Do you consider yourself to be autistic or on the autism spectrum”). That’s it. We are interested in identity, after all.

    I can’t say how many times my diagnosis has been questioned, or that I have any disabilit, or how many times people say it’s offensive to call myself “autistic” since my diagnosis is Asperger’s or that I usually don’t use people-first language re: autism.

    I think the questioning of our being autistic is a profoundly sad reflection on society – not on us, but that we are treated this way. Most NTs probably mean well and are relatively naive about not considering us autistic. I’m sure sometimes they tell us that we’re not on the spectrum or they don’t/didn’t think we’re on the spectrum to try to comfort us, even if we embrace being autistic as an identity. Regardless, those of us who adapt “well” enough to “blend in” enough to appear odd/eccentric/weird/quirky/selfish/goofy/lazy etc. rather than disabled usually do not “come out” very often (and when we do it’s often as an explanation for a misunderstanding, etc.) because of all the stigma. NTs continue to have misconceived stereotypes about autism/Asperger’s etc. partly as a result. Meanwhile, all this exacerbates the challenges we face – the discrimination and lack of reasonable accommodation contribute to the disability itself as far as our presentation/behavior goes – which is how we’re defined despite the neurological basis of the spectrum.

    Similarly, of course other disabled people are disabled by the social context (social model of disability). As possibly implied above, people with “sub-clinical” challenges are disabled regardless of formal diagnosis in large part because their differences may appear subtler.

  26. AWV, you’re not coming off as a jerk at all, and I can definitely see where you’re coming from. I’m a few decades older than you, so I’ve had a lot of years of practice creating structure, to the point it feels like second nature now; though it takes time, I don’t feel like I’m working from scratch so much as I did when I was younger. When I was in my teens and twenties, I struggled a lot with the basics and they took up a great deal of my time, but I was desperate to be independent of my parents, and that gave me a generally positive outlook on the struggle; yes, I didn’t have time for a lot of other things, but just getting the basics down was hugely liberating.

    A lack of a diagnosis probably helped me in those days, in terms of my general outlook and mood, because I wasn’t aware that anyone else did anything differently; I figured that everyone had to write everything down and make lists and work hard pulling things together in unstructured environments, so I never really thought of it as taking time away from other things. I wonder if people who are diagnosed these days labor so much under the sense of being impaired/different/stigmatized that it becomes overwhelming, and thus saps energy for things that are already difficult.

  27. I also would really like to be independent of my parents, but trying to do stuff completely on my own has previously led to a level of shutdown/proto-meltdown that has led to me having a lot of problems with self-injury and other kinds of health. And I don’t think this has anything to do with the fact that I know I’m disabled. It just makes me so anxious and tired I want to die, when I’m in that situation.

    I should probably stop writing this post because I feel like I’m attacking you or trying to have some kind of disability contest with you and I know that everyone is different, but I feel like you’re trying to say that just because you got better, “weak central coherence” isn’t a real problem, but first of all even just a delay is a real problem, but I also know people who haven’t gotten better and are quite a bit older than me.

  28. Just so people are aware, I’m generally the one moderating this thread and approving comments is going to be a bit slow for the rest of the weekend. I’m sorry, I know that’s frustrating when you’re having a conversation, so I wanted to give you a head’s up.

  29. Hi AWV, not to worry, I don’t feel like you’re attacking me, and I don’t feel like this is a disability contest. In fact, everything you’re saying is helping me clarify my thoughts.

    I personally feel that what they call “weak central coherence” is not a deficit in itself, but more the result of overstimulation and sensory overload in an extremely loud, noisy, chaotic world. It’s hard for me to think straight when I’m overwhelmed with sensory stuff, and the more I can control the input, the more clearly I can think and plan. For instance, if I’m trying to think and plan with machinery going in the next yard, it’s much harder than when I put in earplugs or put on a headset and block the sound. I’ve been able to find many ways to control my sensory experience (some I just stumbled on intuitively, before I was diagnosed, and some I’ve consciously sought out more recently), and they have all helped in other areas.

    But that’s just me. Most of my difficulties seem tend to stem from acute sensory sensitivities of one kind or another. Other people may work quite differently. I don’t mean to take anything away from your experience at all. I apologize if it seems like I was doing that.

  30. About the use of the AQ: The survey designer may have been pressured into using it. I am involved in research in which I helped overturn the use of the AQ as part of it. However, the justification given for using the AQ was one that I can actually understand some people doing. Note that I say “understand”, not “like”. It was that many people do not take research involving autistic people seriously unless there is some way of “proving” they are autistic. Since they didn’t want to make diagnosis the only way of proving the research subjects were autistic, they used the AQ. I can easily see that if this is someone who’s still a student, someone along the way may have pressured them into the use of the AQ by saying that the research wasn’t legitimate unless they used it. They may have had little choice. I and a few other people were able to bring up legitimate enough concerns about the AQ that we stopped using it for the research I’m involved in. But not everyone is in a situation where those concerns (if they even understand enough about it to have them) will be listened to. So they can end up between a rock and a hard place as to how to “prove” the people responding are really autistic. That says something nasty about who has the power in certain situations, and about how medicalized things like this are, but it doesn’t necessarily say something nasty about the person trying to do the research. Sometimes it’s the lesser of two evils (the other one being, either requiring a diagnosis exist, or even incorporating an entire diagnostic assessment into the survey). It’s still an evil though, and I can’t stand the AQ or the theory behind it. I just wanted to let you know why people might be forced to use it.

  31. Hi Amanda, you’re right that there were external pressures for the AQ. By the time I was aware of the survey it was mostly designed and only so much could change. I definitely raised objections and explained the issues autistic people might have (which indeed have been brought up here). Once a survey is designed only so much can easily be changed through the Internal Review Board and there are time constraints on the research. Yet the designer and I have a good working relationship and she has been open to considering my feedback and making changes, such as giving participants the opportunity for input on most questions (I would have preferred it be on even more, and did not choose the wording of it). Similarly, we have broken with ethical conventions if not rules in making adjustments to the survey as it has been in use, according to feedback (almost entirely from autistics). In the paper we will be sure to note comments, especially those that are critical, that are peppered throughout the survey and to make advocacy/social justice-related points about them. I think most researchers in the autism field are not even aware of the common issues with instruments like the AQ, and so shedding light on this from the voice of autistics will be important. Again, this is why we hope that if anyone takes issue with anything in the survey that they note them as they take it – then critical issues may have higher numbers and a more powerful effect in getting attention and possibly influencing positive change.

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