Autism self-diagnosis – yet another minefield | Unapologetically Autistic

Autism self-diagnosis – yet another minefield

autism self diagnosis

Autism self-diagnosis is apparently "harmful" and something people "shouldn't" be doing. And this is one more example of people — typically not neurotypicals, just for a change — poking their noses in where they're not wanted, not needed, and have no right to be.

The premise of their argument seems to be a self-diagnosis might be incorrect and thus invalidate and diminish the struggles of those of us who have a formal diagnosis.

And it's a reasonable argument except for the fact it's bullshit because the situation arises so infrequently it's irrelevant.

You see, the premise of the argument is flawed: the assumption there are enough of these people going around genuinely misdiagnosing themselves to make a difference. But that's highly unlikely. It's possible, and on a planet with a population of 8 billion I'd say it's inevitable it's happening. I bet there are even formally diagnoses autistics out there who've cleverly managed to fool their assessor and have a deliberate and contrived misdiagnosis. 

But no one in her right mind would walk around genuinely labelling and diagnosing themselves as autistic just for the hell of it or because they woke up today feeling a bit spectrummy and wanted to draw attention to themselves. 

In my experience, and the experience of others I've spoken to self-diagnosers tend to fall into three groups.

  1. Uninformed neurotypicals who think occasionally exhibiting one or more autistic traits makes them "a little bit autistic". This is so fucking annoying and wide of the mark we'll come back to it in a whole post of its own.
  2. Lead-swingers, malingerers, and cockwombles who are attention-seeking.
  3. People with a deep-seated conviction arrived at after many hours of study, navel-gazing, and angst they are autistic as fuck but still worry they may be wrong and so there's something else deeply fucked about them.

The first group is depressingly common.

The second group is tiny. I've yet to meet one or hear of anyone else who's met one (I'm talking about genuine misdiagnosis here, not casual and trendy self-identification — I've met a few of those).

And if it is happening?

The numbers are tiny (more to the point we can't stop people being dicks if they want to be, so ignore them and focus on your own life).

And the third group?

The overwhelming majority.

Bottom line: the vast majority of people who genuinely and seriously self-diagnose as autistic are not doing it trivially out of sense of whimsy.

Nope, they're doing it because they feel like they're on the wrong planet and it's going help them explain their past and present as well as plan for their futures.

Autism self-diagnosis is the only option some have

If you're an adult then getting an autism diagnosis paid for by whatever health-services you have available in your country is rare and difficult. From what I can gather how hard it is and how long it takes depends where you live and how clued-in your GP is (GPs are mostly clueless about autism and occasionally people get their request for a specialist referral denied because the idiot GP has seen Rain Man and arbitrarily decided he or she is qualified to make a complex diagnosis of "nope" on the basis of a quick chat and stereotypical bullshit gleaned from a popular Hollywood film).

Here in Ireland my chances of getting a diagnosis other than a private one I paid for myself was zero closing on not a fucking chance. Fortunately I was in a position to pay for it myself, but many are not (and often because their being an undiagnosed autistic in the first place has made life so difficult they can't afford one).

A few words of caution

If there is any real harm in autism self-diagnosis, then it's to yourself, and no one can tell you that's not your prerogative.

How can it potentially harm you?

Not only will it change a lot of people's attitude towards you and you'll have to constantly run the whole gauntlet of "yes, but..." bollocks from the ignorant, bigoted, and uninformed, but there's a chance you might give yourself an inaccurate or incomplete diagnosis. 

Are you autistic? If so what level of support do you need?

Do you have co-morbid conditions like alexithymia, ADHD, PTSD, and so on?

Are you mistaking ADHD for autism?

You get my drift.

It's a specialist job, which is why we have professionals to do it.

I'm not saying this to stop you doing it (it's none of my business), but given my experience it'd be remiss of me not to point the potential downsides out to you.

If an autism self-diagnosis helps you make sense of your life, then have at it.

It's no one's business but yours. 

I self-diagnosed here online a few years before my formal diagnosis, and speaking for myself it helped. That said, the reason I finally went for a formal diagnosis was I wanted to be sure and also to have answers. 

Ultimately it’s no ones’ business but yours. If others object strongly to it, offer to let them pay for your private diagnosis.

You’ll soon discover how little integrity they have.

Autistically,

Jon McCulloch, The Evil Bald Genius

Author, speaker, business owner, and autism advocate

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Jon

I'm Jon. Husband, father, business owner, author, speaker, and outspoken advocate for autism awareness. I struggled my whole life knowing I was different, but not knowing how or why. I was finally diagnosed in 2019, but had informally self-identified as autistic for a couple of years before that. I live on a remote farm in Ireland with my wife and an assortment of cats and dogs.

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