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.
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.
- CALL TO ACTION: It’s Matthew Rushin’s Birthday & a Video from Netflix’s Atypical and Friends — August 4, 2020
- What is Self-Harm, Why Does It Happen, and What to Do about It — August 2, 2020
- An Open Letter to Ralph Northam RE: Matthew Rushin — July 29, 2020