Autism: The [Self] Diagnosis Debate11 min read

A friend frets on my social media feed.  “I feel like I’m prob­ably on the spec­trum,” he says.  “I see a lot of myself in how people on the spec­trum describe them­selves, and mul­tiple people– both pro­fes­sionals and random acquain­tances– think it’s likely.  But I don’t have an offi­cial diag­nosis! Even if I know that the bal­ance of prob­a­bility is that I am, I still feel ter­rible calling myself autistic when it’s not actu­ally con­firmed.”

For my own part, I have two strong and con­flicting emo­tions when I see someone strug­gling with this.  The first, because I am a mil­len­nial memelord first and fore­most, is “big mood.” And the second is always “why?

So, why not inflict the internet with my per­sonal thoughts on the matter? None of you are pow­erful enough to stop me!

A woman laughing and looking up at the ceiling as she plays piano.
Me on my bull­shit, if I had a piano

(In case the extremely subtle infor­mality of my tone has escaped your notice, you may have gath­ered I am not an expert on these mat­ters and these are purely per­sonal obser­va­tions.  I’m not encour­aging you to take my thoughts for any more than you judge they’re worth.)

Same Hat!

First, let’s get the steaming irony off the table– I really don’t have any right to be acting as though my brain has expanded far beyond my friend’s cur­rent anx­i­eties.  He is lit­er­ally me, less than six months ago.

My accep­tance of my own autistic self-diagnosis is incred­ibly recent, and I’m still learning about myself and fig­uring out what finally let­ting myself use that label means for me. And back when I was still ques­tioning myself, not at all long ago, I was having the exact same fears that my friend is now.

Well, plus one other fear, spe­cific to my per­sonal sit­u­a­tion: I have ADHD, the symp­toms of which often overlap with autism; how do I know every­thing about me that seems like it might be on the spec­trum isn’t just my ADHD?

A person holding a finger to their lips in a shushing gesture.
Not to spoil the rest of the article but I’m about to explain why this is and always an unnec­es­sary dis­tinc­tion to make

I’ve only moved past those fears through aggres­sively telling myself that no, there are good rea­sons to believe in my own judg­ment on this issue. I need to trust my own knowl­edge of myself. I shouldn’t be afraid to accept a label that not only fits me and my expe­ri­ences, but that actu­ally helps me to better under­stand and explain myself.

At the end of the day, that’s the true point of labels… more on that later.

A picture of Groucho Marx with his cigar.
Today I learned that stock photos of Groucho Marx can cost up to TWO HUNDRED DOLLARS

And really, a lot of the rea­sons I held off for so long? They just…weren’t very good rea­sons, at the end of the day.  Not com­pared to the rea­sons I should have accepted it sooner.

When you break down self-diagnosis of some­thing like autism to its pros and cons, you realize that those feel­ings of guilt and appro­pri­a­tion and ‘but maybe I don’t really belong here’ are all pretty ridicu­lous.

But it does take some con­scious effort to unpack that sort of thing, so per­haps by walking you through those fears, where they come from, and just how real­istic they are (or aren’t), we can set some things to rest.  

If you’ve come here won­dering whether or not you can or should call your­self autistic, feeling like you need a doc­tor’s note to jus­tify how you might choose to describe your expe­ri­ences or what com­mu­nity you belong to, then I’ve been where you are, and I hope I can help you to get to where I cur­rently am.  

Because let me tell you, it feels a lot better over here.

A woman standing out in the wilderness, smiling and looking relaxed, with a rainbow in the background.
You ever have no plans on a Saturday after­noon, and you lie on your floor just admiring your cat? It’s that feeling.

Why Are We So Afraid Of Self-Diagnosis, Anyway?, or: Imposter Syndrome and You

Let’s shuffle the first and biggest ele­phant out of the room right from the start, with a little fact that anyone whose spec­trum expe­ri­ences have over­lapped with queer expe­ri­ences might rec­og­nize: usu­ally the people who strongly iden­tify or wish they could belong to a cer­tain group or label have a very good reason for that.

I often hear this brought up in dis­cus­sions about trans issues, where if you’re– say– a man who really wishes he could be a woman, then usu­ally that means (joyous sur­prise!) you actu­ally are a woman and you just haven’t reached that per­sonal real­iza­tion yet.  Longing to be a woman simply isn’t an expe­ri­ence cis men gen­er­ally have; it’s not some­thing they want, and that’s pre­cisely why they’re cis men.  

And while I don’t want to draw a direct par­allel here between queer­ness and being on the spec­trum (though there’s a whole inter­esting dis­cus­sion to be had about inter­sec­tion­ality between them that could be had), the logic at play here is still fairly sim­ilar: a neu­rotyp­ical person is rarely going to have a lot of rea­sons to believe they’re neu­ro­di­ver­gent, or to wish to be rec­og­nized as neu­ro­di­ver­gent.

A little boy holding a book and looking at the camera in open-mouthed shock.
I just read this very offi­cial report and it turns out the number of neu­rotyp­ical people who des­per­ately want to be seen as autistic is zeroBarnaby Biggins, World’s Smallest Doctor

Being on the spec­trum isn’t such a priv­i­leged posi­tion (I’ve yet to receive my letter jacket, but I’m watching the mail) that there are swaths of neu­rotyp­ical people crowding to get in the door.  If you believe you’re on the spec­trum, if you wish you could describe your­self as on the spec­trum… there’s prob­ably a very good reason for that.  In fact, there may be dozens or hun­dreds of rea­sons for that, which you know better than anyone else.

And that leads neatly into my next point– you may not be an expert on neu­ro­di­ver­gence or brain func­tion or psy­chology, or any branch of head sci­ence at all.  (Lord knows I’m not! I lit­er­ally just called it head sci­ence.) But you are the world’s fore­most and only expert on you and your expe­ri­ences.

Even out­side the sub­ject of neu­ro­di­ver­gence, more and more there’s an emphasis in med­ical prac­tice that the patient is an expert on them­selves. There are numerous sto­ries where doc­tors who assumed they knew better ignored a patient’s input, their knowl­edge of them­selves and their sit­u­a­tion, and it led to incred­ible harm.

A chiropractor turning a patient's head to the right.
“I don’t think that my head can turn 180 degrees, wouldn’t that be bad for my spine?”
“And I don’t think it says chi­ro­practor on your busi­ness card, does it, Carl?”

Obviously a doc­tor’s knowl­edge and expe­ri­ence should be respected, but frankly, we all know that already.  ‘Doctors know a lot of impor­tant things and are experts in their field’ does not exactly need a public aware­ness bill­board cam­paign. The mes­sage that isn’t put out there enough is that you also need to respect your own knowl­edge and expe­ri­ence.

You know things about your­self that you may never even be able to com­mu­ni­cate effec­tively to a doctor, or that someone out­side your head isn’t going to be able to under­stand.  Your input and con­clu­sions on the sub­ject of your neu­rotype are not things to be lightly dis­carded; they have weight. Recognize your own cred­i­bility.

This is excep­tion­ally hard to do, because those of us on the spec­trum (and those who sus­pect they’re on the spec­trum but aren’t yet sure) have often been taught to doubt our own judg­ment.  

We’re far too used to the expe­ri­ence of other people seeing the world com­pletely dif­fer­ently from the way we do. Often we’re directly told that what we’ve done, said, per­ceived, etc, is com­pletely dif­ferent in meaning than what we thought it was, or what we intended it to be. After a life­time of being con­fronted with the real­iza­tion that our per­cep­tions are only an inter­pre­ta­tion of reality, we can’t really trust our per­cep­tions as fac­tual any­more.

The lower half of a woman's face, being held by her hands in shock.
“That thing I said wasn’t rude! I just meant…wait. Wait a sec. Oh g‑d. OH G‑D. I didn’t even think it could be read that way! I’M THE ONLY PERSON HERE WHO HEARD IT THE WAY I MEANT IT OH MY G‑D” — every person on the spec­trum, ever, I checked

What we think is one thing could turn out to be another– or, at least, could turn out to have mul­tiple mean­ings, and not just the one obvious meaning we thought it had.  

In trying to accom­mo­date for our aware­ness that there are at least two very dif­ferent inter­pre­ta­tions of sub­jec­tive reality — the neu­rotyp­ical one we’re not familiar with, and the neu­ro­di­ver­gent one that we are — we learn to doubt that any­thing we know can have one solid, absolute truth.

And that’s not actu­ally a bad way to be! So much of the world is gen­uinely sub­jec­tive; keeping in mind that there are mul­tiple points of view when looking at any­thing can be view-broadening in some amazing ways. But I do feel like it puts us at an inherent dis­ad­van­tage when it comes to trusting our own judg­ment, espe­cially about our­selves.  You may need to actu­ally coach your­self to believe your­self. I know I do.

But it’s a crit­ical skill to learn. Faith in your­self and your per­cep­tions are impor­tant to have for your own self-esteem, but more than that– it’s impos­sible to stand up for your­self and your expe­ri­ences if you doubt your­self too much.  

You’ll end up treating other people and their expe­ri­ences as though they trump your cred­i­bility at all times, and that’s just not true.  It’s one thing to keep an open mind; it’s another to assume that you’re prob­ably wrong by default.  (Another issue I struggle with.)

A woman's bare back turned toward the camera, with the words "love shouldn't hurt" written on her skin in paint.
A topic I’m saving for another day: how being on the spec­trum inter­sects with attracting toxic people and falling victim to abu­sive pat­terns. Sadly, not all the cap­tions can be funny.

 

So, we’ve con­cluded that you have good reason (or rea­sons, plural) to think you’re neu­ro­di­ver­gent, and that it’s impor­tant to trust your­self and your own knowledge…even if it’s hard to do so.  But if those argu­ments for per­mit­ting your­self to self-diagnose aren’t enough, then I’ve got one more to add to the pile– self-diagnosis is an impor­tant tool that should be more nor­mal­ized for the neu­ro­di­ver­gent com­mu­nity as a whole.

Some people simply cannot get offi­cial diag­noses, no matter how much they may want or need them, and that hardly means they should be excluded from the neu­ro­di­ver­gent com­mu­nity.  Gatekeepers are a foul part of just about any com­mu­nity you care to name.

The response to someone seeking sup­port, Solidarity, and under­standing in a com­mu­nity should rarely be to check their cre­den­tials at the door. Those resources aren’t so finite that we need guards at the gate. Even if we did, who could pos­sibly be an impar­tial judge as to who belongs and who doesn’t? Even med­ical pro­fes­sionals can’t always come to a con­sensus on whether or not a person is on the spec­trum.

Someone who is only prob­ably autistic isn’t snatching resources straight from the mouth of someone clin­i­cally diag­nosed with Asperger’s, just by calling them­selves autistic or involving them­selves with the com­mu­nity.  

I am not harming anyone by allowing myself to use the autistic label without an offi­cial diag­nosis– and nei­ther, dear reader, will you.

A person's hand holding out a pinecone.
May I offer you a self-diagnosis in this trying time? Yes — yes I know it looks like a pinecone, it’s a metaphor — yes it’s also a meme — JUST TAKE THE PINECONE

We should all want people to have access to labels that will make their lives easier or more under­stand­able, by helping to explain their expe­ri­ences and find com­mu­ni­ties and sup­port for the issues they face. And the more self-diagnosis is an accept­able form of gaining access to those resources, the more people can be helped by them.

Our com­mu­ni­ties will become bigger, more diverse, and gain more atten­tion and under­standing. Even from those out­side, there will be more atten­tion because there will be more of us, and we’ll be more vis­ible all across the spec­trum. That is not– that cannot-- be a bad thing.

To read the second part of this series on self-diagnosis, click here.

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17 Comments

  1. Thank you for the pine cone. I will cherish it, and keep it next to the (also metaphor­ical) bou­quet of dan­de­lions.

    I don’t have words for my cur­rent “big mood” (I love that expres­sion, by the way) that would make sense to anyone else — I tend to use a lot of metaphors for feel­ings, and without giving all the back­ground on where those metaphors orig­i­nated… Just know that the metaphor­ical pinecone has made me happy and given me courage to be myself a bit more.

    1. Author

      Then the pinecone has served its pur­pose!

      1. Where you said that people who are nt aren’t des­per­ately wanting to be ND. Thank you. As a kid/teen, I used to pre­tend to be autistic. There were non­verbal autistic kids at my school and I envied them…even though I was in the aca­d­e­m­i­cally gifted classes and they were in the life skills classes. I didn’t self diag­nosed until last year. My ther­a­pist agrees with me. Suddenly my whole life makes sense.

    1. Author

      Of course. It’s your pinecone now. If you want to spread the seeds to be able to pro­vide pinecones to other people, that’s a great use for it.

  2. Wow, just wow! Reading your incred­ible article was per­fect timing for me, as I have thought for months that I’m an Aspie, and I have an appoint­ment with a spe­cialist in two weeks. You made me feel soooooo much better about myself with every­thing you said! Most espe­cially the part about my brain thinking I’m writing one thing, and the reader thinking some­thing totally dif­ferent, to the point they were deeply upset with me about some­thing I wrote out of love. I’ve been bor­der­line sui­cidal about it for the last three years since it hap­pened, because I couldn’t com­pre­hend how my sub­con­scious could say some­thing that sounded that hor­rible to her, yet it never sounded hor­rible to me, so there must be some­thing wrong with me, right? And now, thanks to you, I finally may be able to for­give myself! Three years of therapy, with three dif­ferent ther­a­pists (the last of whom said I was def­i­nitely not an Aspie! She is not an expert on it btw), and yet it takes a fellow Aspie to help me make a break­through! Thank you, thank you, thank you! ❤️

    1. Author

      I think one of the most common expe­ri­ences for people on the spec­trum is having one inter­pre­ta­tion of some­thing — what we con­sider the super obvious, if not only, inter­pre­ta­tion — and then finding out, to our shock and regret, that neu­rotyp­i­cals per­ceive the exact same thing COMPLETELY dif­fer­ently. And I think your sit­u­a­tion in par­tic­ular is safe to use Occam’s Razor on: “is it more likely that, despite all my con­scious feel­ings of love and the loving intent of my mes­sage, that some part of me sub­con­sciously WANTED to hurt this person…or is it more likely that I simply didn’t per­ceive how the com­ment could be hurtful because I have a very dif­ferent frame of ref­er­ence?”

      Accidental hurt is still hurtful, but it’s entirely pos­sible (and sadly easy) to hurt people without having the slightest mali­cious intent. But it’s also a common expe­ri­ence for people on the spec­trum to miss things that neu­rotyp­i­cals con­sider blind­ingly obvious, and then be accused of willful igno­rance when for us, no, it really IS that obscure. I’m not faking social awk­ward­ness for my health, folks!

      If my arti­cle’s helped you under­stand your­self better and reach a better place, then that’s absolutely won­derful.

  3. I enjoyed reading this.

    I didn’t even really know that being diag­nosed with autism was even a con­sid­er­a­tion towards me when I first had a psy­chol­o­gist wrap up 6 months of analysis of me with “You’re an Asperger, and I want you to learn more about living with it.” I was dumb­founded, the only autistic person I had know pre­vi­ously was severely non-functional but a musical savant. I knew about aspergers because of an article about the bit tor­rent cre­ator I had read some years before that but didn’t really imagine it was me. Then I started reading about it and was some­what per­plexed with the idea that someone was fol­lowing my life and taking notes and reducing it to a label that explains com­plex behvav­iours, every one of the diag­nositc cri­teria I fit and no other diag­nosis up to that time explained to any decent degree what was ‘wrong’ or ‘right’ about my exis­tence up to that time.

    This is over a decade ago and since that time I have seen many con­ver­sa­tions where the person sus­pected they were on the spec­trum or I sus­pected they were. I think you hit the nail on the head that likely there is a reason a person would feel like they fit the cri­teria.

  4. Thank you for that. I’m not going to go for an expen­sive diag­nosis at my age (75 y‑o female) and didn’t really know any­thing about Aspergers 2 years ago, when I heard a radio talk about it and burst into tears at the end, because it was me. I’m me now and happy with myself.

  5. I don’t think I needed this yet, but I think I will need it very very soon. Oh, and the thing about being the only person to per­ceive some­thing a cer­tain way is so so me and it gets me into trouble con­stantly. I’d also love to hear more about the ADHD thing because I think that would put a lot of my dis­com­fort about labeling myself to rest. Either way this article was really appre­ci­ated and I hope someday it will help me have the couragr to give myself a label that makes me feel com­fort­able. Although god knows if that will ever happen.




  6. I’m per­son­ally not a fan of diag­nosis. I judge that med­ical agency (his­tor­i­cally and cur­rently) is as neg­a­tive in its effects as it is pos­i­tive. That being said I respect those who think to the con­trary.
    I found, over growing up, that I had affinity for and empathy with those that the col­lec­tive was diag­nosing as having impaired being of one kind of another. In the begin­ning this left me iso­lated and silent. Progressively, as I and society changed, this became a matter of recog­nising com­mon­ality with larger group­ings, where mem­bers of those group­ings were now increas­ingly inter­acting with one another. When it came to where I was working pro­fes­sion­ally, in an edu­ca­tional capacity, with young people on the spec­trum, it was a matter of recog­nising and acknowl­edging ‘my tribe’. So self-identification rather than self-diagnosis was the vehicle taking me into the rest of my life; iden­ti­fi­ca­tion of self with others across affinity and empathy. Same momentum and tra­jec­tory as this piece on self-diagnosis so well speaks to.

  7. I received an ASD diag­nosis last year. I pur­sued one since I have health issues. I needed to explain to med­ical pro­fes­sionals my spe­cial needs so I wasn’t just per­ceived as a dif­fi­cult patient. Since my diag­nosis my hus­band has been won­dering if he’s on the spec­trum. I’ve dis­missed his con­cerns ini­tially because he’s so much more social than me. But I now realize autism can present itself in many ways. He may be social but he still makes many social blun­ders! I’ve recently been more open to the idea of him being autistic. He sees no reason to pursue a formal diag­nosis. He works with com­puter geeks who are for­giving of his awk­ward­ness since he’s so bright. And reading this article helped me better under­stand his rea­soning for not pur­suing a diag­nosis. Thank you.

  8. BEST LINE:
    In trying to accom­mo­date for our aware­ness that there are at least two very dif­ferent inter­pre­ta­tions of sub­jec­tive reality – the neu­rotyp­ical one we’re not familiar with, and the neu­ro­di­ver­gent one that we are – we learn to doubt that any­thing we know can have one solid, absolute truth.
    THX

  9. I can’t get a diag­nosis because it’s too expen­sive but it’s been 2 years since ive sus­pected and no one believes me but for 2 years!!!

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