Hello, and welcome back to The Autistic Writer. How are you all doing? I’ve had a strange week, in that I’ve been putting my proverbial head in the metaphorical sand, trying to pretend an upcoming hospital appointment wasn’t really looming. But I knew that on Friday, reality would bite, and I’d have to face up to it. I had been waiting a year for this appointment, and in the end, I only got it because I raised a complaint with the patient liaison people about the delay.
So, I attended hospital, and explained to the doctor what had been going on with a long-running, niggling health problem. I knew one possible outcome of the appointment could be a cancer diagnosis. But it wasn’t. I came away with some optimistic test results and two lots of meds I have to take for a while. *phew*. The relief was pretty intense. Now, I’ve got a few days leave from my day job, and I can relax. Well, I can relax as much as an autistic person getting continually pissed off with the world can ever relax, which ain’t much. Case in point; it was with zero surprise that on Friday, while in the waiting room at the hospital, I stumbled upon an article about autism in the New York Post…
The article in the New York Post is so full of autism misinformation in its narrative that I was hard pushed to pull out quotes; I could just quote the whole thing. But more damaging than the Post’s narrative comments were the remarks of two highly respected doctors; Allen Frances and Laurent Mottron. Both men are psychiatrists of considerable professional renown. Frances is also the author of a book decrying what he claims to be the medicalisation of normality. Seriously. So, what exactly is the rumpus with this article? Before I get into the nitty-gritty, let me give you some background to a particular aspect of autism that is probably going to form the battlefield for the ongoing war of ideas that will shape the future of the autistic community.
There have always been autistic people; this much is not in doubt. Research indicates the genetic root of autism is undeniable. This means autism is highly heritable, but can also emerge in a given person even if their forebears were not autistic. We’ve always been here, but autism hasn’t always been studied. It hasn’t always been recognised as a thing. But following the industrial revolution’s boom in population worldwide, and greater city-based population density, autistic people found it harder to escape neurotypicality. So it was inevitable that someone, somewhere, sooner or later, would spot a clutch of different behaviours in certain people. Thus the study of autism was born.
There is a problem with the way I’ve just described autism in the above paragraph. I’ve framed it in a way that indicates autism is a thing. But really, it’s misleading to apply a noun at all when talking about – pardon the noun – autism. What we are really talking about is a section of the human race who experience life and the world in a way that is fundamentally different from the majority. It’s just an easy mental and verbal shortcut to say, autism, but autism is not a thing you can pick up and put down. When you study autism, what you’re really doing is studying autistic people.
When people started studying autism, whether you’re thinking of Grunya Sukhareva, Hans Asperger, or Leo Kanner, what they were actually studying was the behaviour of autistic people. As yet, almost a hundred years after Sukhareva’s work, no one has invented a magic camera that enables a neurotypical person to see inside an autistic person’s mind, and experience autism. Apart from genetic research, which at best can only identify genetic correlations, all autism research and study has been behavioural.
At some point, each of these professionals studying autism has identified a group of core behaviours, and given them a medicalised term, whether that be pervasive developmental disorder, or autism spectrum disorder, or whatever. These terms are, of course, completely arbitrary. Every single diagnostic term in the field of autism has been thought up by someone who has decided, completely arbitrarily, what behaviours fit their conception of the alleged disorder they want to describe. Meanwhile, autistic people just carry on being autistic, regardless of whether their observed behaviours fit into a given medicalised framework.
Autism has this bizarre status of not being an illness, yet being described and medicalised by mental health professionals, and being identified by diagnosis. But autism isn’t like having a bacterial infection, or covid. You can’t spot autism with a blood test or a lateral flow test. So instead, we rely on the professionals to carry out a behavioural diagnosis.
The problem – or one of the many problems – with a behavioural diagnosis of autism is that the diagnostic criteria are subject to change. A bacterial infection will either be present in the body or not – there’s no “maybe” (although diagnosis might not be 100% accurate, the infection is either there or not). But as far as the mental health professionals are concerned, the “presence” of autism is contingent on whichever diagnostic criteria are “in play”. This is, by anyone’s standards, a complete nonsense, and is an example of the scandalously unfair way autistic people are mistreated by the largely neurotypical society.
My official diagnosis is Autism Spectrum Disorder (formerly Asperger Syndrome). I have a six-page diagnostic report explaining exactly how the diagnosis was arrived at. My autism assessments were, to put it mildly, traumatic. The years leading up to it were also traumatic. My whole life, to some extent, has been one crisis after another, because I was an autistic person who didn’t know he was autistic, and the neurotypical world was slowly killing me. But maybe, if the official diagnostic criteria were to undergo yet another change, my autism would no longer be valid. The “bar” might be raised to such a height that my particular autism couldn’t clear it. Would that mean I was no longer autistic? Does it mean that we now have a “cure” for autism – just change the diagnostic criteria? Of course not – that would be, as we say in the north, a load of bollocks. And yet, those highly respected autism professionals I’m so fond of* are looking to bring such a situation about. (*Note: I’m not really fond of autism professionals – that was just a little sarcasm of the kind the myths say autistic people are not capable of.)
So, to the New York Post article. The New York Post should not be confused with the New York Times. The New York Times has won more than 130 Pulitzer Prizes for journalism. The New York Post is a sensationalist tabloid plaything of the Murdoch empire. So we shouldn’t be surprised when they sensationalise autism and do their best to provoke and promote public unease over autism.
In this sick joke of an article, they claim a study has shown “Autism rates in the US have increased some 500% over the past 16 years”. This is a gross misrepresentation; autism rates are not increasing. What is increasing is autism recognition and diagnosis. There is no reason to conclude there are more autistic people than before (other than can be explained by a continuing increase in overall global population); just that we are getting better at identifying autistic people. Alongside the ridiculous 500% claim, the article refers to “profound” autism; those autistic people who need “around the clock care”. (The term profound autism infuriates me, but this week’s blog isn’t the time to go down that particular rabbit hole. Suffice it to say for now, the notion of a scale of severity of autism, one way or another, harms all autistic people. I’ll cover it again in more detail in a future blog.)
The real damage this article inflicts starts with the question it poses: “But is the rise in autism really the result of better screening, or are we over-diagnosing regular behavior?” What? Overdiagnosing regular behaviour? What the hell does that even mean? Enter the comedy double-act…
The esteemed Dr Allen Frances is quoted as saying he is, “very sorry for helping to lower the diagnosis bar.” Frances, you see, was one of the people responsible for the changes to the diagnostic criteria involved in introducing the term autism spectrum disorder to the DSM (Diagnostic and Statistical Manual of Mental Disorders). Frances goes on to claim he has, “contributed to the creation of diagnostic fads that resulted in the massive over-diagnosis of autistic disorders in children and adults.” This claim is even worse than it first seems…
Firstly, in this claim, Frances is saying that some people who are not autistic have been given an autism diagnosis. He calls this overdiagnosis, but that is clearly incorrect. It would be mis-diagnosis for this to occur. But health professionals are loath to use the term mis-diagnosis, because it opens up the possibility of medical malpractice suits in the litigation-happy US.
The term overdiagnosis is a cowardly, slippery, weasely word. It suggests too many people are given a diagnosis, but not a mis-diagnosis. So what is it? Too many people have been given a correct diagnosis? That’s oxymoronic. And too many by whose standards? Frances’s suggestion is that the current DSM criteria for the diagnosis autism spectrum disorder are to blame; that the professionals are diagnosing correctly within the given criteria, but the criteria – which Frances himself helped put in place – are now, suddenly incorrect. But why? In a triumph of circular reasoning, Frances appears to claim that autism is being overdiagnosed because too many people are being diagnosed.
Referring to the work that went into planning the autism updates for the DSM 4, Frances says, “Careful field testing suggested the new definition would just triple the rate. Instead it quickly multiplied almost 100 fold.” In other words, these weren’t the figures he was looking for, and he doesn’t like them. But then, stupendously, he adds, “More clinicians began labeling both normal diversity and a variety of other psychological problems as autistic.” Wait, what? That definitely sounds like mis-diagnosing, something which is unlikely to go down well with his peers. Why is a renowned professional spouting this absurd claptrap? Well, as I mentioned earlier, Frances wrote a book, with the haughty title, Saving Normal: An Insider’s Revolt against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life.
We have to understand that Frances’s position is ideological. He has decided, from his position of experience and authority, that too many people are being diagnosed with psychiatric disorders and mental illnesses. He doesn’t like it. It’s not what he grew up with. In his day, people just got on with it, and now everyone has a trauma. Let me be blunt; he’s a dinosaur. Frances has all the technical expertise of a seasoned professional, but the mindset of someone who has been left behind by greater cultural awareness of mental illness, psychological trauma, and, of course, autism. Now, enter his buddy, Laurent Mottron…
Mottron, who at a sprightly 70 years of age is somewhat younger than Frances, describes the DSM 5 as, “vague and trivial definitions and ambiguous language that ensures more people fall into various, abnormal categories.” For Mottron, the greater awareness of mental illness, trauma, and psychiatric conditions that has emerged over the last couple of decades, helping countless people get the support they need, is not a good thing. Fewer people should be diagnosed, according to him, which presumably means the rest of us should just shut up and put up with our mental health issues. That’s what they did in his day, by gum. I wonder what kind of figure he would suggest as an acceptable amount of diagnosis, and what would happen in his la-la-land to the people who were left over when the quota had been filled.
Both these experts are influential enough that they could well provoke a change to the DSM’s diagnostic criteria for autism. Both seem unaware of the arbitrary nature of their claims. The sporadic changes to diagnostic criteria (remember, the DSM is currently on version 5) bear no relationship to the real, lived experience of autistic people the world over. Potential change to literature and guidance will not make some autistic people suddenly not be autistic; it will simply undermine the lives of autistic people. All this puts autistic people in a hugely difficult situation.
Although autism is not an illness, it’s important to note that autistic people are often made unwell by the unaccepting neurotypical world. The lack of acceptance can be hugely harmful to the mental health of autistic people. This can be due to overt acts such as bullying, abuse, and deliberate social exclusion, or it can be due to more passive influences, such as sensory-overpowering environments. Mental illnesses, particularly depression and anxiety, are extremely common in autistic people. In addition, there is the halo of so-called co-morbidities that often accompany autism; epilepsy, gastro issues, OCD, and on and on the list goes.
Autistic people, whether we choose to identify as disabled or not, are disabled by the society we live in, and often by those co-occurring conditions, too. Some of us are so disabled that we need access to benefits, but the gateway to those benefits is usually an official diagnosis. Here we are; between a rock and a hard place. The medicalised paradigm of autism is both unhelpful to us, and subject to the ideological whims of the mental health professionals who decide upon the diagnostic criteria (rock), but we need an official diagnosis to enforce aspects of social acceptance – benefits, legal protection from workplace discrimination, etc – where all else fails (hard place). The ideological drives of outdated old pros like Frances and Mottron threaten to crush autistic people between the rock and the hard place.
It’s clear that the people best placed to identify autism in a given individual are other autistic people. We are beginning, as a social minority, to exert our own influence over the public debate over autism. This is the start of a power shift that will make professionals like Frances and Mottron very uncomfortable, and is unlikely to sit well with any autism professional. But it’s going to happen, regardless. What will follow is a move away from medicalised diagnosis of autism, to a process of social acceptance of people who identify as autistic. The rub is in how we can ensure that those of us who also identify as disabled remain entitled to relevant legal protections and financial benefits. Legislation in some countries already covers this, such as the 2010 Equality Act in the UK, but there is definitely room and requirement for improvement.
When true social acceptance of autistic people finally arrives, we will find that the rock and hard place we autistic people currently find ourselves trapped between will simply evaporate like mist in a new dawn, and the old autism professionals will be remembered only as fossils.
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That’s all for this week. Until next time, take care.
Darren
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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.
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