When I take autism indicators designed to help figure out if an adult is autistic or not, I feel like the questions can’t be accurately answered without some context and clarification, and I’m not the only autistic person who feels this way.
My colleague, Sebastian Joseph, and I are working to put together a series on one of the most frequently used autism screening tools, the Autism Spectrum Quotient (AQ) questionnaire, which was developed by Simon Baron-Cohen and cohorts.
The AQ is a 50-question self-reported tool designed for undiagnosed adults who are not intellectually disabled. The answers are the standard almost always, sometimes, rarely, or almost never.
While this series focuses on deconstructing this one measurement, most of the tests out there are similar– and similarly flawed.
So for those developing tests, and for audience entertainment, we are going to tackle the questions from the AQ by showing you autistic people’s internal dialogue in response to them.
This first article is my own interaction with a few of the questions. For follow-up articles of this series, my friend Sebastian has interviewed quite a few autistic adults and will show you their internal processes as they respond to other questions.
Question 1: I prefer to do things with others rather than on my own.
We’re starting out with the first question having the word things in it? And others?
Given the ambiguous verbiage, the answer is equal parts “almost always” and “almost never.”
If we’re saying “things,” do we mean going to the library? A restaurant? Watching Netflix? Neflix n chill? Bathing? Assembling an Ikea shelf? Going to a public protest?
And what “others” are we referencing?
Does this mean my weird friend who also hates the mass majority of people and who will sit on the recliner while I sit on the couch and send me memes instead of talking to me?
Because yes, I rather enjoy a guest who doesn’t demand that I forfeit my communication style, my sensory needs, and my boundaries. I love being with people when I’m not expected to mask.
I adore people who are at least not going to burden me with small talk or be offended when I leave the room without announcing where I’m going, why I’m going, and what it means to our relationship– like not checking in constantly is a personal attack on the sanctity of our friendship.
So now, on the first question, I’m panicking. I can’t stand inaccuracies. I also hate to lie. If I say the most autistic-esque thing, then it is not true enough, and I won’t be confident in my score.
What’s the scoring metric on this garbage?
But I’m not willing to concede if what the question really wants to know is if I want to go to a sporting event or shopping mall, or if I want to belabor myself with the company of people who enjoy sporting events and shopping malls. There’s nothing wrong with those things, but I don’t want to do them, and I don’t want company who expects that we share every interest.
The better question would have been, Do vague questions requiring you to insert your own internal context cause you to frenetically overthink and break out in stress hives trying to answer them?
Question 7: Other people frequently tell me that what I have said is impolite, even though I think it is polite.
Well, again, it depends on what you mean by other people. If we are talking about the general population, then yes. They assume that what I have said is in some way a hint about how I feel about our relationship and what I expect from it.
Me: I like reading a lot.
Other person: Do you want me to leave? Are you trying to tell me that I talk too much? Sometimes I just want to have a conversation and spend some time with people I care about. I guess that’s too much to ask.
Me: No. I mean, literally, I enjoy reading.
Other person: I wish you had told me this before I made reservations for dinner.
Me: Huh? What does that have to do with dinner?
Other person: You are such a gaslighting bully. You’re always playing head games and then treating me like I’m crazy.
Me: …
Other person: See!?
So, I would agree, even though that’s not entirely accurate…
The truth is that I don’t think I’ve been polite. I have been polite. I’m polite when I set boundaries for myself. I’m polite when I advocate for my needs.
I’m polite when I say no.
Nevertheless, people do tell me that I’m being impolite, either directly or with their passive aggression and their frustrated sighs… so I guess I will stuff myself into this harmful stereotype and select “strongly agree.”
Question 20: When I’m reading a story, I find it difficult to work out the characters’ intentions.
So this ableist trope is going to determine whether or not I’m autistic?
That depends on what is meant by “story.”
If you’re talking Nora Roberts or Nicholas Sparks, then yeah, I’m having a hard time working out their intentions.
This question is predicated on the idea that the stories adult autistics read are mainstream fluff fiction, maybe?
When I read those, yes, I am at least curious why they are following a plug-and-play script. I wonder, Why can you not communicate clearly so that you aren’t in this mess? Why are you not just explaining yourself? Who could possibly enjoy this?
But no, my first degree is in literature. I was a literature teacher for 13 years. I find Captain Ahab, Hamlet, Ellison’s Invisible Man, Hesse’s Harry of Steppenwolf, and even Gardner’s Grendel quite relatable.
It’s not me who has a hard time understanding their intentions.
In fact, it’s quite easy to see that most of the literature that has survived long enough to be considered “timeless” or “classic” was written by eccentric misanthropes who were more like me than the architects of this questionnaire.
For example, reading this AQ test, I feel like Mark Twain or Johnathan Swift, or the macabre and metacognitive Flannery O’Connor, an anachronistic satirist, somehow simultaneously ahead of the times and behind the times.
In my head, I write parodies of you, Simon Baron-Cohen. I name you Simeon Dunning-Kruger, and your “mind blind” theory is the subject of melodramatic farce.
I have a lot more in common with Melville and Twain and Dostoevsky than with Sophie Kinsella of the Shopaholic series fame.
So what do I answer, and is having the capacity to relate to atypical characters going to bar me from being diagnosed as an atypical neurotype?
I answer “rarely” and perform a deep-earth eye roll.
The Hot Take
I’m an adult. I’ve had time to find and carve out a way of life that is compatible– more or less– with my neurology. I’m nothing if not resourceful.
Being as honest as I could be, I still scored way above the cut-off point. So, is the questionnaire accurate by me? Yes. But that’s not good enough.
I still had to break myself down into a cluster of stereotypes and assent to things that flatten my identity into a bunch of autism-as-conceived-by-Wikipedia canards.
Can I just flap a few times in the office and make chicken sounds randomly, maybe, to speed up the process?
Because the AQ made me audition for autism while putting a bad script in my hands… and performing too well or too poorly is still a performance for a baseless and hollow conception of who I am.
I could have put “almost always” and “almost never” on at least half of these questions. Both would have been true.
This test literally makes me have to split my reality and identity into segments, just like broader society.
That should not be okay.
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22 Responses
My biggest difficulty with the AQ questionnaire was that it contains a number of what I like to call “compound questions” … and I never know how to answer these. Here is a typical compound question: “I like to do A and B”. Now, let us suppose I ADORE doing A, and I DESPISE doing B. How on earth am I supposed to answer that question. The instruction is to choose the answer which is closest to my own reaction. Say what? How?
Another compound question, even more hideous in its structure, says “I always do X because Y”. In these sort of questions, what on earth do the frequency responses relate to? Is it simply how often I do X, or is it how often I “do X because Y”, or is it how often, given that I am doing X, the reason for my doing it will be Y? Usually these three different interpretations yields three different answers … which one am I supposed to be giving them?
I could go on … but I won’t. I’ll just leave it there and point out that compound questions are unhelpful, because they leave us guessing which of a range of possible interpretations, each of which yields a different result, is intended. Maybe neurotypicals don’t have this problem. Maybe it’s “obvious” to them which is intended … and the fact it is not obvious that the autistic minority doesn’t matter for the purposes of most such questionnaires, because we are a statistically insignificant minority whose confusion won’t skew the results sufficiently to make them unreliable as an indicator of where the neurotypical majority as a whole is at. But in a questionnaire designed to help us find out, on an individual-by-individual basis whether we are autistic or not, I think it is unfortunate and unhelpful that there are questions which we, the autistic, struggle to relate to.
My instant response to nearly all these questions is “well, it depends what you mean by….”, followed by trying to work out what the question is trying to measure, what my response is to what I think they’re asking, how that response maps onto the answer options, and whether I can in all honesty give that answer based on how I naturally interpret the question.
Some, like the “character intentions” question, I simply don’t know how to answer. For a start, that assumes that I am actually trying to work out their intentions, when, in reality, I read fiction for entertainment, for relaxation, the same way I watch most tv and films – I don’t try to analyse it, I just let the story reveal itself as it goes along (the same reason I hate the “next week on” and “look who’s coming back” tv spoilers). Then there’s the whole problem of whose intentions are you supposed to be identifying, the character or the author, the character is fictional and therefore cannot independently have intentions. And then, I read crime fiction and thrillers, where the author’s intent is often to misdirect the reader – have I failed (or passed?) this test because I didn’t realise that’s what was happening? Am I able to come up with an idea of what a character’s intentions might be? Yes I am if I try to, probably more than one option that fits the given data. Will it match the author’s version? And if not, does that actually make it wrong?
Can we just have a question that asks if we’re capable of spending an inordinate amount of time analysing the possible interpretations of any given question?
Can we just have a question that asks if we’re capable of spending an inordinate amount of time analysing the possible interpretations of any given question? And for that particular question I could, with considerable confidence, and without hesitation, answer “Almost always”.
Your comments always make me happy, Barry.
Shoutout to all the weird friends out there, you’re the best company ever!
I agree with the author and with the commenters above. When I had the AQ administered to me, the psychologist doing so said, “take your time and select the answer that best fits your understanding of the questions.” He also allowed me to talk through the answers and give qualifications which, although they did not enter my “score,” surely entered his assessment, since it was both qualitative and quantitative. I’m guessing that most people did not have as understanding an administrator. I am, however, not willing to criticize Baron-Cohen overly. I’ve read many of his articles and I also consider his software for theory of mind ground breaking.
I found the AQ and RAADS-R tests really frustrating. They all have similar problems. I wrote commentary on my tests, and then wrote a few pages of more in depth answers. I complained to the psychiatrist and psychologist that tested me that the tests were too superficial.
yes, this!
One of the questions is about whether being around people makes you ‘uncomfortable’. Someone I’m close to answered Almost Never, because “it’s not physically uncomfortable, it’s just something you have to do, like washing the dishes” and I’ve never heard a more autistic answer in my life but he didn’t get any points for it…
This is brilliant! When I first found the AQ or something like it online, I kept stumbling over the idea of “well, yes *sometimes*, but I’ve learned how to deal with…”. The whole thing doesn’t take into account the fact that, as autistic adults, we’ve had years to work things out. It wasn’t until I’d tried several of these types of tests that it occurred to me that most people learn how to hold a socially acceptable conversation in childhood, not around age 24 like me. The very thought that we can learn and adapt isn’t even included in testing like this.
I’ve taken it a few times lately and I keep thinking this! Like, if I answer according to ‘what I used to do before I made myself stop doing it’ it would be a different thing. People don’t tell me I’m impolite *anymore* because a) I’ve learnt from experience not to say certain things the way I used to. But b) a lot of adults don’t just outright say to each other ‘that’s impolite’ they just silently get offended and stop talking to you.
And I have so many ‘it depends’ and ‘what exactly do you mean by ‘things’ or ‘difficult’?’ Difficult compared to what? Or to whom? Some things I don’t know how to answer because i never think about e.g. I don’t know if I find it difficult to work out characters intentions in a story. I’m not thinking about it when i read, I’m just rolling with what is written. If I was trying to figure them out, how would I know if I was right or wrong? If I think I know the character’s intentions but I turn out to be wrong, is that just a plot twist? Or what if I just never know that I was wrong and I forever see the character differently than others? So how do I answer whether it is difficult?
I didn’t have a lot of problems with the AQ, but I also took it in a translated form (German). There might be slight changes made that made the questions overall more understandable. But usually, when I answer psychology tests like that, I try to think of a situation that is typical in my life and go with the assumption of how I would act in this made-up situation. You’re, after all, not supposed to dissect a test like this, just associate your answer and go with your intuition on what you usually would do. I do agree that it is a faulty premise to test autistics like that, because a lot of people would react in this manner of “it depends”. I know a lot of neurotypical people who would also consider psychological tests to be way too derived in the same manner.
Testers are usually aware that not everything will match perfectly as well, so I never was mad about being stereotyped. That’s the aim of this test, to stereotype people into “autistic” or “nonautistic”. You can turn the questions around and ask “are really all NT extroverted outgoing social butterflies who constantly relate to everyone and everything?” No, they aren’t, but they would be stereotyped in this way, according to the test.
“In fact, it’s quite easy to see that most of the literature that has survived long enough to be considered “timeless” or “classic” was written by eccentric misanthropes who were more like me than the architects of this questionnaire.” Ehh, that’s a little bit problematic to me. That sounds a lot like an argument from privilege. A lot of people don’t relate to classic literature, because they were gatekept from it. Through poverty, not being white or a man and other factors that helped decide their interests for them. To then insinuate that their taste is somehow wrong for liking “mainstream fluff fiction” just sounded elitist to me. What about autistics who do enjoy reading romance novels and can relate to those characters but don’t relate to “The Classics, as decided by the Western white male”? I don’t know, it just came off a bit wrong to me.
I think the whole point was that the questionnaire assumes that an autistic person could *never* relate easily to fictional characters, but this person’s very autistic way of relating to them simultaneously affirmed their neurology AND failed the test.
There is no implied judgment about your experience here. This person just enjoys reading.
This is going to seem ranty, but it’s not at you at all. It’s kind of the inner dialogue that I have every time I write something. I have a hard time characterizing my strengths because I’m afraid that people are going to accuse me of privilege. But, I’m a marginalized person, in multiple ways, and also have some forms of privilege. I don’t know, I guess I feel like it’s not fair for me to ask myself to hide and mask.
As an AFAB person born in the most underserved, impoverished, poorly educated region of the US, having had no one in my entire family who had an education beyond high school (this includes whole family, all generations, cousins, etc.), I somewhat resent the notion that my personal interaction with literature that almost no one else finds relatable is a reflection of privileged gatekeeping. Ahab is a whaling captain that is regarded as insane and monomaniacal. Flannery O’Connor is a woman. Ralph Ellison is Black. The people I mentioned were all scathing critics of the privileged. Reading Ralph Ellison’s Invisible Man was the first time I ever in my life felt understood and seen. And I do relate more to male characters, and allowing myself to even say that out loud is salacious and scandalous for where I grew up.
I’m saying that I don’t relate to the mainstream, not that the mainstream “fluff” is wrong for whomever it is that enjoys it. I’m trying to demonstrate that I’m atypical and that I’ve surrounded myself with things that are from other atypical people who are relatable to me, and it’s insulting to me to have what ultimately is a passion for me invalidated, pathologized, or ruling me out as autistic. Not because I relate to their skill level. I relate to their rejection of norms and their criticism of oppressive institutions.
And this isn’t an accusation against you, but kind of the discussion I had with myself before I wrote this. Isn’t it ableist and its own form of elitism against marginalized people to assume that their pursuits are a result of privilege when they’re not actively opining about oppression? If you heard a marginalized person playing Mozart or Beethoven on the piano, would you assume that they condescend to people who like pop music or that they are privileged elites? Doesn’t that presupposition ask marginalized people to never shine or to hide parts of themselves? Or do they stop being marginalized if they have a talent or a passion that is a high skill level?
I grew up as an AFAB dyslexic, adhd autistic in the backwoods in a West Virginia coal camp. My tastes have afforded me no privilege and have only been criticized. At what point is it okay to talk about myself? I can’t draw, sing, paint, dance– hell, I can barely walk. Can’t I have words? (again, not at you, just kind of throwing this out into the ether).
I don’t know. I feel like I just shed one mask to put on another. It’s just another way for my preferences to not be acceptable.
I don’t love the AQ either. It can be too vague and it seems to be written from an outsider’s perspective.
Yeah, I tore into some of these ridiculous AQ questions last year in a seminar I gave at Bristol Uni. “Would you prefer to go to a party or a library?” Errrr….both thanks, because I am not a one-dimensional stereotype.
Sarahhdbristol, so glad you wrote that; I had exactly the same difficulty with the question about preferring going to a museum or theatre. What a weird question to ask!
I’m diagnosed with ADHD (dyspraxia, too), and it may well be that it’s my ADHD self that loves the theatre. Or not. Who knows?
But to assign points to one over the other (as the AQ does) is at best ignorant and at worst downright dangerous: somebody who scores ‘incorrectly’ on some of the AQ questions (ie who scores borderline or below the ‘likely autistic’ cut-off) might just give up on seeking out a diagnosis that could otherwise possibly change their lives. Or even prove life-saving.
Come on Simon Baron-Cohen; this simply isn’t good enough.
Thank you for this awesome post!! THIS is the kind of stuff I crave when I come to neuroclastic*: help me to learn about me and to relate to other auties.
Yes, that. To ALL of it!
(*I also crave an explanation of the sudden name change, but suffer mostly in silence)
I felt the same way about the AQ. It feels too much like stereotypes some of the time, and for so many questions the answer was “well, it depends on the context or my mood.” It’s so broad to the point that I wonder if the creators don’t realize that autistic people are also nuanced human beings