Autism: The [Self] Diagnosis Debate9 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.

Callie

Callie (real name undisclosed due to terminal awkwardness) is a 35-year-old self-diagnosed autistic woman with no particular credentials outside her own experiences. There is no actual evidence of her being three feral raccoons lashed together in a trenchcoat, but they've never been seen in the same room together, either.

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16 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!

  2. Can I plant the pinecone so it will give pinecones to other people?  I think it’s needed.  I needed it

    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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.




  7. 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.

  8. 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.

  9. 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

  10. 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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