Hello, and welcome back to The Autistic Writer. It’s good to have you here, and I hope you’re all well. I made a decision this week, and it involved overcoming a psychological barrier and some considerable fear. I rejoined my local gym. Not a big deal, you might think, but it was for me. Regular readers will remember that just under a year ago, I was admitted to hospital via A&E, suffering excruciating back pain. I remained in hospital for a few days, pumped full of morphine, diazepam, codeine and paracetamol. I need a couple more weeks at home to recover before I could get mobile. The problem was a disc in my spine bulging into the nerve in a particularly nasty way. By spring, I had made my first tentative steps at getting back in the gym, when my shoulder gave out. More pain, and another trip to A&E, more radiography, and a diagnosis of a calcified tendon, which eventually had to be treated with injections. As I recovered from this, I would have occasional flare-ups of back pain from the disc, which continues to bulge and is being monitored. But gradually, things have got better. I’ve been itching to get back into the gym, but every time I thought about signing back up, I would get a rush of panic; what if I do some damage to my spine, and set off the problems all over again? The pain that led to me being hospitalised was so severe that the thought of it happening again scares the crap out of me. Anyway, this week I had a review at the physio, and I pumped the therapist for information about the bulging disc. He was great; very patient, and explained in detail, with diagrams, how exercising won’t damage the disc, although I might experience some irritation and discomfort. He set my mind at rest. So, I had my first visit back at the gym on Wednesday, a second visit yesterday, and I took baby steps, with very, very gentle workouts. I’m going to have to be careful and patient, and take it real slow. But it felt good to be back.
In this weeks blog, I want to talk about my understanding of neurodivergence, and the issues that arise from our opinions of, and approach to, diagnosis. I’ve had some thoughts about this subject for quite a while now, but I was triggered into writing about it by something which will come as no surprise to those who know me: Someone tweeting passive-aggressive bullshit about autism, and trying to frame it as an, “I was only asking,” question. This doesn’t wash with me. My aim of mythbusting, and answering back those who perpetuate harmful misinformation about autism, will always be directed at stuff like this. Here is the offending Tweet:
Will Witt has over a hundred thousand followers on Twitter, which gives him a significant platform. He claims to be a bestselling author and filmmaker although, in all honesty, I’d never heard of him before seeing this tweet on my timeline. Why should I be angry about the tweet? I mean, he was just asking, right? Right? Well, no. The passive-aggressive tone in his question is self-evident, but far worse is the misinformation it encodes: His unspoken, untweeted follow-on is, This can’t be good! How can this be happening? And this is like ambrosia to anti-vaxx conspiracy theorists, who still hang on to Wakefield’s mendacious nonsense claim that vaccines cause autism. It’s also fury fuel for those who don’t believe in autism, and for those who believe autism is being inflicted on society as part of a global plot by governments / the Illuminati, aliens, etc, etc. Not to mention those who think autism is caused by gluten, or food additives, or whatever. I mean, if there are more and more
autistic people people “catching” autism, there’s something wrong, right? Right? Erm, no… Read on…
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Autism only really became recognised as a thing in the late 1930s. That’s less than one hundred years ago. It was after my mother was born. It’s recent. Recognition of autism started with the figure who still casts a dark shadow over us; Hans Asperger. Shortly after Asperger was doing his stuff, Leo Kanner picked up on it in the USA, but the progress was slow. The history of the study and understanding of autism has been littered with misunderstanding, malice, ambition, cruelty and fraud. The reason Will Witt’s “data” was, as I put it with such restraint, poop, is that it is based on a complete misunderstanding of the situation. Where he got his figures from I don’t know, but it barely matters. There have always been autistic people, and as neurodivergence is a naturally occurring phenomenon, you could probably expect the numbers to vary somewhat over time, but the main reason the reported figures of the incidence of autism increase is precisely because they are reported figures. Reported figures come from “official” diagnoses, and guess what? As the research into autism has changed the understanding of it, diagnostic criteria have changed, expanded and become more inclusive. But it goes even further than that. Even if diagnostic criteria change, there is still the issue of human fallibility and ignorance. How does one get a diagnosis? Who refers a person for an autism diagnosis? If the person responsible for instigating such a referral is ignorant of the details of autism, then people who should be getting a referral might not be getting one. And then there is the issue of bias; for how long did many people think females could not be autistic, and how many females were misdiagnosed with something else? Sometimes, even obvious autism is not spotted: I was aged 52 when I was referred, and 54 when I was diagnosed. Knowing what I know now, it baffles me that no one – family, friends, employers, teachers, lovers – spotted I was autistic. It was so bloody obvious. But that’s the thing – I’m thinking it was obvious knowing what I know now. The understanding and perception of autism have improved dramatically over the decades since Asperger, especially in the last few years. It’s not that there are more autistic people; it’s just that we are more likely to recognise autism now. Thus, the reported numbers of autistic people have increased. So, Will Witt, we were always here in those numbers; you just didn’t see us. But there’s something else…
Interestingly, Will Witt’s comment, like the ten billionth chimp at a typewriter accidentally producing the complete works of Shakespeare, has hit on something that needs talking about. And it’s an uncomfortable thought for autistic people. To get our heads around this, we need to take a short digression into the realm of diagnosis: Is it really okay to talk about diagnosis when it comes to autism? I’m going to try to be brief here, because this is a subject I’ve covered before, but we kind of need a recap. This issue overlaps with my regular mantra; words have power. We know there are huge amounts of harmful misinformation about autism out there. Some of this misinformation is disseminated deliberately; some of it is incidental, coming about through people repeating what they’ve heard without considering the consequences. It is common to talk about autism being diagnosed. It’s an official-sounding term. I personally have an official diagnosis of autism spectrum disorder (formerly Asperger’s syndrome). The words, diagnose and diagnosis can have slightly varied meanings depending on the context, but generally speaking, people associate them with illness. Autism diagnoses generally come from psychiatrists and psychologists, who treat mental illness. With this prevalent context, it’s easy to see why many people end up seeing autism as an illness. That’s the power of words. Autism is not an illness (if you’re new to this concept, please google it, or visit the NHS website). I prefer the term identified rather than diagnosed, but I sometimes have to go with the established terminology to make my point. The thing is, to be “officially” identified as autistic, you have to have an “official” diagnosis. Many people self-identify or self-diagnose as autistic, of course. I self-diagnosed while I was on the waiting list for my “official” assessment. It’s controversial, as some people refuse to accept that self-diagnosis is valid. Usually, those rejecting the validity of self-diagnosis do so either because they have misunderstood the issue, or they are actively malicious. Now is not the time to go into the finer details of the self-diagnosis debate, but for the record, I’ll make my personal position clear; self-diagnosis is valid. But whatever terminology we use, and whoever diagnoses or identifies us, one thing is clear; to be able to say someone is or is not autistic, we have to have a set of criteria that we use to make the distinction. So, where do these criteria come from? And if those criteria are subject to change, can we even be sure that anyone identified as autistic really is? I mean, what if the criteria shift again? What if, next week, someone publishes a well-received, peer-reviewed paper suggesting new criteria for the identification of autism, and under these criteria, I would not be classed as autistic? What then? We should have a good long think about this…
An “official” diagnosis of autism will usually be made in reference to criteria described in the Diagnostic and Statistical Manual of Mental Disorders, or DSM for short. The word disorder is fraught with problems when it comes to autism, as it further entrenches the false idea that autism is an illness, but again, today is not the day to tackle this, so we’ll roll with it. The point here is that the diagnostic criteria for autism have changed over time, and could change again. Autism was given its first listing in the DSM as a separate (sigh) disorder in 1980; before then it had been under the schizophrenia umbrella. The autism diagnostic criteria were then expanded significantly in 1987’s revision of the DSM-III. It was as recently as 1994 that the DSM specified autism as a spectrum. The DSM has also removed Asperger’s syndrome as a diagnosis, bringing it under the autism spectrum disorder grouping. While it is true at one level to say that the changes to diagnostic criteria are driven by recognised experts in the field, as a result of research and clinical work, it is also equally true to say these changes are arbitrarily made by career people, the vast majority of who are not autistic, and who have a vested interest (financial, professional) in maintaining the medical paradigm of autism. This is one reason why there is a growing feeling in the autistic community – a feeling I concur with – that autistic people are better qualified to identify other people as autistic than are the so-called experts. But wait, how the hell would that work? If we autistic people have reason to doubt or distrust the official diagnostic criteria, either because it is so subject to change, or because the professionals have a clear conflict of interest, then what are we going to use as our criteria? Well, we have to shift focus slightly now, if we are to justify being able to give the required answer to that question…
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There are nearly eight billion human beings living on this planet. That’s nearly eight billion different brains. Each one of those brains is different. Neuroplasticity means that each person’s brain develops differently. The brain shapes how we think, how we perceive the world, and so on, but reciprocally, our experiences shape our brains, too, so there is a constant to-and-fro of brain development. This means that an individual person’s neural architecture is as unique as a fingerprint. A human brain is a dazzlingly complex organ, and the possible combinations and permutations of neural development among we dominant primates runs almost to the infinite Lutz Jäncke, UHZ professor of neuropsychology at the University of Zurich, who I quoted at the top of the blog, is an expert in the field of neuroplasticity. In a 2018 paper, he explained that individual people could be identified from their brain anatomy with an accuracy of at least 90%. The point here is that all human brains are different. However, for all that difference, they are also in many ways similar to each other; all human brains look roughly the same at first glance, and we all function in a similar way. The differences are clear and real but also subtle. This has implications for the arbitrariness of the diagnosis of autism, and for any identification or self-identification of autism: If all brains are different, then what is neurodivergence diverging from? Aren’t all brains neurodivergent? Okay, let’s imagine a scatter graph of the brains of all humans alive today. Each brain is represented as a dot on the graph. The position of the dots on the graph is significant; the closer together any dots are, the more similar is their neural architecture; the further apart the dots are, the more divergent they are. Nearly eight billion is a lot of dots. Such a graph, with so many dots, would probably look something like an illustration of all the stars of the Milky Way, or a bit like this:
Someone somewhere has to make a decision about what, among these billions of brains, constitutes neurodivergence, autistic or otherwise. They develop a set of criteria that effectively form a border on the graph; on one side of the border is normality, and on the other side is abnormality or neurodivergence. The first set of criteria for autism might have created a border that looked something like this, for example:
But then when the diagnostic criteria are changed or updated, the border ring might be redrawn, for example, like this:
Alternatively, changes to diagnostic criteria could move the other way, like this:
Any changes in diagnostic criteria, then, have huge implications for how autistic people, indeed all neurodivergent people, are identified. Could I suddenly become not “officially” autistic, because of a change in criteria? Could someone previously not considered remotely neurodivergent suddenly find themselves being told by a psychiatrist they are autistic if criteria changed the other way? If the answer is yes, then the logical extension of this is that, in theory, criteria could change so dramatically that all humanity is bracketed into neurodivergence, which is ridiculous, and also likely to light the blue touchpaper for those of us in the autistic community who are sick and tired of hearing fools say, We’re all a little bit autistic, aren’t we? This illustrates why the arbitrariness of autism diagnosis is fraught with difficulty; there is a potential for it to say that we are all neurodivergent, in which case the neurodivergence becomes meaningless, and the real, lived experience of autistic people struggling to cope with the neurotypical world is neurowashed out of recognition. If, like me, you are autistic, you know the reality is that the difference between neurotypicals and ourselves is very real. The fact that it is difficult to discern the exact dividing line between neurotypicality and neurodivergence, should not fool anyone into thinking the difference does not exist. So, what are those differences, really?
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If you search around for a definition of autism, and you’re persistent enough to not just accept the first thing you read, you are likely to become, after a while, somewhat baffled. Autism is often described as a developmental disability or developmental disorder, but those two words, disability and disorder are subject to so much misunderstanding and discrimination that they deserve articles all of their own (indeed, I have covered them previously, and will do again). We also find lists of typically recognised autistic characteristics, many of which turn out to be either blatantly untrue or grossly misrepresented; black and white thinking, lack of empathy, and so on (again, I’ve covered these myths in previous articles). Is it possible for us to narrow down the criteria, to boil down autism to some simple, easy to identify and obvious characteristics that are genuinely common to all autistic people? That’s an almost impossible task, I fear. Due to the diversity among us, any effort to boil down to the basics risks alienating part of the autistic community, and that is something I don’t want to do. Our strength is in our unity. But we have to try to come up with something that identifies autism in such a way that it is not subject to the whims and agendas of the mainly neurotypical, professionally conflicted, psychiatric professionals. I want to put forward just two things that I think go a long way to being sure-fire identifiers of autism, but I want to put up front the disclaimer that I will listen to any and all autistic voices on this, whether they fully agree, partially agree, or completely disagree with me. I am not the final authority on autism; I’m just an autistic person trying to improve understanding. Anyway, deep breath, here goes:
- Sensory: Autistic people process their individual sensory input differently than non-autistic people. Exactly how this manifests varies by individual, but it is always enough to be noticed if you know what to look for. It may take the form of extra sensitvity, or reduced sensitivity, or just different sensitivity in one or more of the senses. The sensory difference is often not static and the type and degree of sensitivity may vary at different times and in different circumstances. The key point is that these sensory differences can trigger either a level of pleasure or, more commonly, distress in an autistic individual that is not experienced by the neurotypical. Autistic people who do not know they are autistic might not be able to understand or describe what is happening to them on a sensory level, and it often needs the identification or diagnosis of autism for that person to gain the context, and realise how and why their experience is different from the neurotypical people around them.
- Social. Autistic people tend to have an innate way of understanding and interpreting behaviour and communication that is different from the neurotypical. This can lead to great difficulties in forming and maintaining relationships with neurotypical people. It is common for autistic people to be out-grouped in social, educational, and professional contexts. This often results in severe anxiety and depression, especially for those autistic people who don’t know they are autistic, or who have not come to terms with being autistic, as they often blame themselves or dislike themselves because of these difficulties. Often, autistic people who have come to terms take a more balanced view, and see neurotypical interactions as flawed, unfair, and often dishonest. This understanding helps autistic people develop pride in being autistic.
I’m painfully aware that my two-point breakdown of core autism is painfully over-simplified. It’s not intended to be the be-all and end-all, or to replace current diagnostic criteria. Autism is complex, people are complex, and autistic people are really complex. But as a starting point for being able to say that autism is a real thing that does not owe its existence to changeable diagnostic criteria arbitrarily decided upon by conflicted neurotypicals, it probably has a bit of merit. Please, as always, let me know your thoughts, either here or on Twitter, Facebook, Reddit, etc.
That’s all for this week. Until next time, take care, be good, stay proud.
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.