Hello, and welcome back to The Autistic Writer. Thanks for dropping by. I came across a report about some recent autism research that I want to talk about today, but before we get into that, let me update you on my current vaccination status…
Sadly, not everyone appreciates what passes for my sense of humour… One person replied (and I quote verbatim): “It may of had some kind of effect for you, if consider that being funny or even a joke.” I can only sigh. Anyway, on with the blog. One of my earliest childhood memories is one that I think many people will be able to identify with. I got hold of a balloon, and decided I would blow it up, and see how large I could make it. And of course, it frightened the life out of me when the thing exploded in my face. Nevertheless, other intrepid balloon experiments followed… such as partially filling a balloon with water, and then squeezing it so that odd bulges appeared… leading to wetness. Reader, I made a metaphor. Come along, and I’ll explain…
A recent study has examined the frequency of co-occurring mental health conditions in autistic people, in relation to age at diagnosis. The general finding – or at least the simplified finding you’re likely to see reported in any media that covers it – is that autistic people diagnosed after age 21 are roughly three times more likely to suffer co-occurring mental health conditions than those diagnosed earlier. As with all research of this kind, there are limits to how far you can trust the data. As the authors of the study openly admit, the cohort lacks some diversity. More than 4,000 autistic people were surveyed for the study, which is a decent sized cohort, but it obviously rules out all those autistic people who didn’t respond. Participants had to be over age 18, be legally independent, have a formal autism diagnosis, and reside in the US, for example. The paper goes on to break down the results of their survey by sex, age, and various other metrics including physical and mental health conditions. It’s a hell of a breakdown of data for such a limited cohort, and I’m not sure what this part of the study can tell us that is meaningful for the global autistic population. But still, the overall thrust of the study, which is that the later in life a person is diagnosed as autistic, the more likely they are to suffer various mental health conditions, will be blindingly unsurprising to autistic people themselves, as it seems to be stating the obvious. But what does it all mean, and what will the wider community take from the conclusions of a study like this?
The problem with a conclusion like this is that it is very vague, and open to interpretation. And people sometimes make very bad interpretations. When the people making bad interpretations are the very people you rely on for help, this can be a huge problem.
Some time ago, when I was deep in serious struggles with mental health problems, my GP openly admitted that he had very little understanding of autism, as it is such a specialised subject, and he felt that I should be referred to a mental health specialist with a background in autism, who could understand how the two intersect. I was grateful for his honesty and integrity. But not all GPs are so switched on, much less psychologists and psychiatrists. I’ve written many times about the way autism professionals are wallowing in the official line of autism perpetuated by the likes of Simon Baron-Cohen, which effectively dehumanises autistic people, and disseminates harmful myths about us. I’ve also covered many times the financial conflict of interest that pervades the autism professionals community. We’ve seen time and again how the autism professionals community would like to portray autism as having a scale of severity (wrong – it just isn’t that simple), and we’ve heard noises about autism supposedly being over-diagnosed (which would really mean misdiagnosed; a phrase those professionals would avoid). It’s possible that for professionals with such an ideological approach to autism, a skin-deep reading of the study could be used to further their agenda…
Imagine an adult, let’s call her Alice, approaching a potential autism diagnosis. She is unlucky enough to be assessed by an autism professional who ideologically believes autism is being over-diagnosed. Alice doesn’t quite fit the autism professional’s profile of an autistic person who needs treatments, therapies and interventions. His thought process goes like this: Autism is over-diagnosed in people who are simply suffering long-term [insert mental health conditions]. Alice has been referred for an autism assessment, but clearly is suffering from [insert mental health conditions] that can mimic aspects of autism. A misdiagnosis of autism here will add to the ever increasing numbers of supposedly autistic adults who actually have these mental illnesses and are taking up resources intended for people who really are autistic. Alice goes away with a diagnosis of depression and social anxiety disorder, when she is in fact autistic. Think it can’t happen? Unfortunately, it has already happened to many autistic people who have gone many years with an incorrect or incomplete diagnosis.
There is actually a simple and obvious truth behind the greater frequency of mental illness in people diagnosed as autistic in adulthood. When you go through life as an undiagnosed/unidentified autistic person, you suffer the ongoing sensory barrage and social minefields without understanding why it is a problem for you. Depression and anxiety become a way of life, and the trauma from this lived experience of being autistic and not knowing it builds up gradually. You’re like a balloon slowly being filled with trauma until the bulges start to appear, and you begin to realise your problems are more severe than you realised… but by then it’s usually too late. The balloon bursts, which takes the form of a catastrophic autistic burnout, and all too often the autistic person’s mental health is left in tatters before an official diagnosis arrives. I’m sure many autistic people diagnosed in adulthood will identify with this. In fact, the process is so obvious, it’s almost embarrassing to have to point it out. Unfortunately, the study doesn’t really identify this process: Unidentified autism accumulates mental illness and leads to autistic burnout which leads to a collapse of mental health, which – if you’re lucky – leads to an autism diagnosis. Instead, we have a somewhat wishy-washy conclusion about a “critical need to include information about autism diagnosis” in training. Furthermore, the purpose of this is not, according to the authors, to increase the availability and quality of autism diagnosis, but to promote “equitable access to mental health care.” In the overall scheme of things, this study appears to have no real objective value to autistic people at all. It’s just one more example of professionals in the field of autism pandering to their own set of values with little or no actual consideration for the autistic people they are putting under their microscope.
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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.
The Autistic Writer 
I identify with this 100%. I am simultaneously sad and glad to not be alone.
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How sad that so many late-diagnosed autistic people suffer so much. Being misunderstood, struggling, and without enough support for years on end can take such a toll.
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