There’s been a revival of the self-diagnosis debate as it pertains to the Asperger’s/autism spectrum on social media (three guesses as to which platform, but you’ll probably only need one).
I wasn’t surprised by who started it, but I am surprised by who agreed with them.
The topic is ridiculous–not that self-diagnosis/assessment/evaluation/identification (whichever word appeals to you) is ridiculous, but rather, that its validity is debated or even questioned at all.
People know how–and who–they are. Anyone who is honest with themselves and can separate reality from fantasy can look at the list of Asperger’s/autistic traits and nod and say, “yep, that’s me” or “nope, that’s not me”. And people have a general understanding of proportional math; given a list containing a certain number of traits, the more traits to which they can nod in the affirmative, the more likely they are to be on the spectrum. (This is, of course, given that the trait list itself is comprehensive and doesn’t leave out entire categories and whatnot.)
What else is ridiculous is the opposition to self-assessment and the arguments made.
Arguments like “people shouldn’t be able to diagnose themselves off of one quiz”.
I have not yet come across a single person who said, “I took the Asperger’s/Autism Quotient test and it said I was autistic”. Though they probably would actually be within their rights–and probably correct–to do exactly that; according to research, 86% of those who score in the 26-31 “borderline” range have been correctly found to meet the diagnostic criteria. Despite the accuracy of this test (which is indeed used by many medical/psychological professionals to render a diagnosis!), everyone I’ve ever known to self-identify as Asperger’s/autistic has merely used that quiz as the starting point for a long journey. For them (myself included), that quiz wasn’t an open-and-shut OK-that-settles-it endpoint; instead, it was a jaw-dropping, OK-take-a-deep-breath-and-keep-researching launchpad.
Let’s go through some of the (ridiculous) arguments made by those opposed to self-diagnosis/assessment/whatever, and explain why they’re crap.
“You can’t possibly be objective about yourself.”
Delusions or inability to separate fantasy from reality are not listed among the Asperger’s/autism diagnostic criteria. Thus, the Aspergian/autistic mind is generally a sound one. It’s not a mental disorder, despite its persistent (inaccurate) inclusion in the DSM of Mental Disorders.
This means that yes, the autistic mind can be “trusted” to be accurate.
No one knows a person better than themselves.
That doesn’t mean that it’s not also a good idea for partners or other family members to complete an observational questionnaire of their own, but no one lives with you 24/7 except you. No one can observe you every minute of every day like you do.
Maybe some people are uncomfortable pointing the laser of truth at themselves, for whatever reason, and many reasons are legitimate. But don’t lump everybody in with the few who can’t, because in my experience, the majority can.
Speaking of objectivity in relation to a formal diagnosis by a professional, let’s get one thing straight: there is no such thing.
Read that again: there’s no such thing as total objectivity in a formal diagnosis.
This is because it’s not a “what” that’s doing the professional assessment, it’s a “who”. This implies that a human being is at the helm, behind the clipboard, performing the evaluation. And again, they don’t know you like you do. They’re going to spend anywhere from a few minutes to a few hours with you. Sure, they’re going to ask all the pertinent questions.
But in the end, a formal diagnosis is all about interpretation. Many of them fail to pick up on glaringly obvious traits because they’re used to evaluating 6-year-old boys. A female in her 30s is probably going to present quite differently. It’s up to the evaluator to decide whether someone meets the criteria or not. My own evaluator, a licensed PhD psychologist and an expert in adults on the Asperger’s/autism spectrum, said himself that the diagnostic process is incredibly subjective.
“People just say they’re autistic for attention.”
I’m willing to bet some people do. And I’m willing to bet just as much that those people aren’t on the spectrum. And I’m also willing to bet that the vast majority of self-diagnosed/assessed/identified autistic people don’t do that, if any at all.
In fact, most genuinely Aspergian/autistic people have heavier debates with themselves concerning who to tell, when to come out, and how to bring it up. Most people in our lives are kept at arm’s length, and our truth is carried with us as our secret, on a Need To Know basis. That’s not exactly attention-seeking behavior.
In an unofficial Myers-Briggs survey I ran last fall on social media, of the 100 or so people who responded (and I requested that only those on the spectrum participate), only two identified themselves as being more extroverted. That is to say that only two people out of a little more than 100 had a Myers-Briggs type that started with an “E”; everyone else was an “I”-something. Introverts tend not to be ones to throw themselves into the middle of a crowd and say, “look at me! I’m autistic!” (Not that I’m implying that the “E” Aspie/autistic peeps would do such a thing, either!) 🙂
You can pretty much tell an Aspie/autistic person because when they find out that they might be on the spectrum, they’ll keep digging and digging, treating it as a diagnosis/assessment of exclusion, after having rules out all other possibilities.
I have a few questions of my own:
Who knows autism better than those living it?
Who made neurotypical gatekeepers the almighty authority?
Who says they know everything? Who says that they can’t make mistakes?
If you’re against self-diagnosis and you insist that everyone who “wants” to call themselves autistic obtain that piece of paper, are you going to front the average cost it can take to get this done, and/or are you going to suffer with them while they wait and wait for an appointment months or years in the future? I hear that the average wait time in the UK is 1.5-2 years. I also hear that the average cost in the US is $2,000-5,000. Are you going to live that person’s life while they languish?
And official diagnosis can bite one in the ass, especially in the US. It can rear its ugly head anytime, often in ways that one can’t always anticipate. Should their official diagnosis become an issue and soundness of mind get called into question in, say, a child custody case where they face losing their children, or an employment case, where they face losing their job or have to jump through extra hoops in an eligibility process, are you going to show up in support or help pay their expenses? Should their diagnosis bar them from fulfilling their dreams, are you going to offer a listening ear every time they’re reminded of this? Are you going to pay for the counseling they’ll need for the depression that’ll likely result?
I thought not. So the elitists can shut up anytime now. Anytime at all.
And it is incredibly elitist to shun a genuine self-identified person just because they’re missing a piece of paper from a medical model gatekeeper.
It’s also an incredible insult to the perceptive autistic brain to imply that it’s not good enough or competent enough or sound enough to come to a conclusion about the person they know best, especially if they’re the one who knows best.
I’ve also noticed that some of the loudest opponents of self-diagnosis/assessment are those who are privileged. Those who live in countries where professional evaluation is free. Those who were born in the “right” eras, after the diagnostic criteria had been refined into something recognizable. Those who are the “right” gender or had well-to-do parents.
And let’s poke at the elephant in the room: another category of staunch opponents consists of those who make their money off of providing professional evaluations. It’s a little silly to say “here’s a huge list of traits” but say to someone who fits 95%+ of them, “oh, you’re not qualified to say you’re autistic because you don’t have a piece of paper (from someone who has never met you and doesn’t know you from Adam) because you’re not a Professional”.
It’s like being LGBTQIA – if you are, you are. You either see the traits in you, or you don’t. You identify that way, or you don’t.
Be honest with thyself (which also goes for those with financial stakes in the official diagnosis market).
F–k the elitists; they’re ignorant.
If your Asperger’s/autism spectrum status is self-determined, I don’t give a shit; you’re still–and will always be–welcome (and legitimately autistic) in my book.