Part 97: Autism Self-Diagnosis – Let’s Go Round Again!

Hello, and welcome back to The Autistic Writer. I hope you’re all well. I’ve had a largely uneventful week until Wednesday, when – once again – I found myself having to defend autistic people who self-diagnose, and indeed having to defend self-diagnosis itself. Regular readers will, I’m sure, be able to guess this took place on Twitter. There is a war of ideas being fought on social media over autism, and when it comes to the subject of self-diagnosis, I find the same old reactionary criticisms being spouted time after time, with seemingly little thought being given to the arguments. Rather like I pointed out in last week’s blog, some people argue from a position of emotion, and then try – and fail – to back it up with logic that has been drastically flawed by attempts to hammer its square peg in the round hole of emotional reasoning.

The number of logical errors made by people who say self-diagnosis is not valid is quite remarkable. So, I’m going to use this week’s blog to explode some myths about diagnosis and self-diagnosis. In case anyone is in any doubt, let me unequivocally state my position before I go on to explain it…

Okay, there’s a lot to cover in this, so I’m going to try to keep each point as brief as is practicable. Here we go:

The criticism that self-diagnosis is not valid stems from the belief that an official or formal diagnosis carries expertise and authority, and is therefore the only way to be “correct”. Under scrutiny, this position falls apart, thus:

  • Diagnostic criteria are subject to change: Historically, autism has been classed as a psychiatric disorder, a developmental disorder, a behavioural disorder, and so on. Correspondingly, diagnostic manuals have updated their diagnostic criteria repeatedly, and there are regular concerns raised in the media that autism is over diagnosed – with some claims that the DSM was planning on changing diagnostic criteria yet again – but these claims are always refuted with counter-claims of under-diagnosis. The problem with changing diagnostic criteria is that – in theory – people diagnosed as autistic today could find their diagnoses no longer valid tomorrow… or people not considered autistic today might find they fall within the diagnostic criteria tomorrow. It’s a nonsense, and raises the next point…
  • Diagnosis is an artificial construct: Autistic people are always autistic, regardless of any political, social or financial pressures to change diagnostic criteria. Such pressures will always be in place, because any work done in the field of autism, whether that be research, theory, diagnosis, whatever, has to be funded. The fact that diagnostic criteria are subject to regular change, along with the troubling conflicts of interest that emerge when financial pressures are examined, highlight the artificial nature of the diagnostic process. Whatever diagnostic criteria might be in play at any given time, all they do is throw a hoop over a set of observed behaviours, and call those behaviours autism. Social pressures should not be underestimated – remember, it was once thought that females could not be autistic!
  • Misdiagnosis is frighteningly common: This point is not limited to autism, but applies to all health and mental health conditions. Misdiagnosis occurs frequently. Sometimes, in cancer patients for example, misdiagnosis occurs simply because clinicians do not understand probability. In medical settings, it has been estimated that 5% of patients are misdiagnosed. That might seem like a small figure, but in real terms, it’s a lot of people, with roughly 12 million people in the United States being misdiagnosed every year, according to a study by BMJ Quality and Safety. It is important to remember that misdiagnosis cuts two ways, with both false positives and false negatives occurring. In the case of autism, it’s likely to be a higher rate of misdiagnosis because…
  • Diagnosis of autism is inherently unreliable: There is no blood test to confirm autism diagnosis. Work is being done in genetics and brain imaging, but as yet there are no such tests available to confirm autism – and there might never be, seeing as literally hundreds of genes have been identified as correlating with autism, and as autism presents so differently in every autistic person, it could be impossible to generate a single imaging template. Currently, formal diagnosis of autism involves a mental health professional carrying out observations and collating historical information regarding a person’s behaviour, and then making a judgement call on how these fit with whatever diagnostic criteria happen to be in play at the time. This opinion-based approach in itself shows us that the diagnosis is unreliable, before we even factor in the issue of the double empathy problem. When we consider that one of the defining characteristics of neurodiversity is the multi-directional differences in communication methods, then it becomes obvious that the double empathy problem must act as a blurring agent between any autistic person and the allistic professional assessing them.
  • It’s early days: Autism was first recognised and studied somewhere from 80 to 100 years ago, depending on which source you go to. This is not a long time. As I like to frame it; when Hans Asperger and Leo Kanner were carrying out their respective work on autism, my mother was in her twenties. Compare this with epilepsy, which was described in ancient Babylonian texts, and cancer, which was recognised by Egyptians over a thousand years BCE. The study and recognition of autism is still in its infancy, and it would be unwise to simply assume that our current understanding of autism, and the current diagnostic criteria, are the best the human race will ever come up with. Furthermore, the study of autism has been riddled with error and fraud. From so-called refrigerator moms causing autism, to Andrew Wakefield’s corrupt and fraudulent claim that vaccines cause autism, and everything in between, the study and public perception of autism has been sidetracked and set back repeatedly by lies and misdirection.

Okay, so the above points should make clear to all but the most obtuse emotional thinkers that we cannot rely on formal or official diagnosis of autism as the final word on whether a given individual is or is not autistic. If an authority is unreliable, then it makes no sense to appeal to that authority if your argument against self-diagnosis is based on it. But I’m sure many of you will believe you have spotted a potential flaw in my logic: Simply claiming that formal diagnosis is unreliable is not the same as saying self-diagnosis is valid. This is true. But before I could go on to explain why self-diagnosis is valid, it was important to get the above refutation of formal diagnosis as the only “correct” diagnosis out of the way. I also need to point out that, despite all I have said above, it would be wrong to assume my position is that formal diagnosis is not valid. I’m sure many formal diagnoses – including mine – are perfectly valid. My point is simply this: the process of formal diagnosis cannot be assumed to be completely or even largely reliable, and therefore should not be used in an appeal to authority when arguing against the validity of self-diagnosis. Now, before I give you my reasons why self-diagnosis is valid, I want to tackle two more myths:

Self-Diagnosis is not guesswork: An oft-repeated criticism levelled at people self-diagnosing autism is that being autistic is now supposedly trendy or cool, and anyone with a quirky personality is claiming to be autistic. Well, I guess it’s possible that some people could falsely claim to be autistic, sure. But is the potential incidence likely to be any more significant than the incidence of misdiagnosis by professionals? Regardless of this, however, self-diagnosis is not about just saying, “I think I might be autistic”. Self-diagnosis is a process usually triggered by years of trauma, and consisting of a great deal of research and soul-searching. Many people in this position are reluctant to believe they are autistic, but feel compelled to know for sure because they recognise there is something fundamentally different about them. Please do not confuse or conflate the process of self-diagnosis and self-identification with the person who lightheartedly but incorrectly comments they might be autistic without actually checking a single thing. That is not self-diagnosis. This might be a good time to mention that some people simply cannot access an independent formal diagnosis, perhaps because of financial or social restrictions. To deny an autistic person the right to identify as autistic in such circumstances is inhuman. Being autistic does not depend on having a formal diagnosis; a formal diagnosis does not create neurodivergence – it just attempts to recognise it. And in case you wondered, anyone falsely claiming to all and sundry that they are autistic would soon regret it when they come up against the discrimination we autistic people face daily. Life is not always easy or pleasant once you come out as autistic. The dangers to relationships and careers are real.

We are not faking it: It’s also possible – in theory – that someone could fake autistic behaviours so well that they could receive a formal diagnosis. And there are real reasons why someone might want to do this – for example, to gain access to benefits. But honestly, how common do we realistically think this is? And even if it did happen occasionally, to use this as a springboard for saying self-diagnosis is not valid does not make a shred of sense.

Why Self-Diagnosis Its Valid

I mentioned above that autism presents differently in all autistic people. All autistic people are different. As I often say, autism is like a fingerprint; unique to the individual. And yet, just like different fingerprints are all different but still recognisable as fingerprints, each autistic person’s autism is different, but still recognisable as autism. A fear often found in popular media is that as autism is so variable, it is impossible to classify, and so isn’t really a thing. This is nonsense, and is akin to saying that as every snowflake has a uniquely different construction, snowflakes aren’t really a thing.

Despite the many and varied ways autism presents in autistic individuals, there is a huge amount of overlap and commonality in our experience. It is very common for autistic people to be able to “spot” autism in others. Many autistic people are fascinated by autism, and it is particularly common for people diagnosed in adulthood to throw themselves into finding out as much as possible about autism. It’s a joyful, liberating, and validating experience for newly-diagnosed adults to join in with the autistic community online, and find they have so much in common.

An understanding of autism develops in these situations; a massive online information store has accumulated thanks to huge numbers of autistic people sharing their experiences and observations with each other on Twitter, Facebook, Reddit, blogs, and so on. In recent years, we’ve seen autistic people writing books about their autistic life experience. This autistic focus on autism, and the cumulative sharing of experience, has consolidated knowledge about autism as experienced by autistic people in a way that a few decades of misguided formal study by allistics could never achieve. We have a new generation of autism experts; autistic people.

The autistic community is a social minority of people distinguished by our neurodivergence. It is becoming clear that even the term diagnosis might be inappropriate to describe our status and experience. It could well be more appropriate to talk about identifying as autistic, rather than being diagnosed. And as with any social minority, the gateway to acceptance is self-determination and agency. Autism would, in anything approaching fairness, be identified by autistic people. If you balk at this, then it is highly likely you are tethered to old-fashioned notions of autism as a mental disorder, rather than as we now know it, neurodivergence.

All across the autism spaces on social media we have people – mainly allistic people – telling autistic people that self-diagnosis is not valid, that it is wrong, even that it is dangerous. These naysayers seem to have forgotten that the formal diagnostic criteria were made up by allistic people to describe behaviour they did not fully understand; autistic behaviour. And allistic autism professionals will never fully understand autism because they cannot live it. Sadly, however, the view that formal diagnosis by professionals is the final word on autism has taken root in a small number or autistic people who are persuaded by the argument from authority – an argument I dismantled, above. It’s a shocking state of affairs that some autistic people have been duped into rejecting self-diagnosis, but I’m confident that eventually, the right message will get through because one thing is certain: Self-diagnosis of autism is valid because the people who know the most about what it is like to be autistic are… autistic people.

I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.

That’s all for this week. Until next time, take care.

Darren

You can find The Autistic Writer on all your favourite social media channels


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.


3 thoughts on “Part 97: Autism Self-Diagnosis – Let’s Go Round Again!

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