Have we gone too far with diagnoses of autism?

[SpinachIsLush]

I know this is a sensitive topic, and I'm sorry if it upsets anyone.

I was listening to a child psychiatrist yesterday arguing very convincingly that we've gone way too far in labelling what are essentially normal (albeit not universal, and sometimes difficult) human traits.

Have we gone too far in "diagnosing neurodiversity" so often? Is it actually because the world is increasingly difficult for young people to navigate, which is making more and more appear to fall outside "normal"?

Yes, certainly on MN. Every thread about an arsehole husband has at least one poster popping up with the 'are you sure he's not autistic?' bullshit. No he's not autistic he's an arsehole and it does people with ND traits no favours to assume arseholery = ND.

In that I will also acknowledge that working in social care I know a lot of individuals who’s autism impacts their ability to verbally communicate, socialise and process the word around them without significant support may also skew my perception of autism. It makes it difficult for me to consider my son who talk and socialises (when in the mood) and copes well in school and extra curriculars (in general) could have autism just because he can be defiant at school (they mean they have to ask 2-3 times for him to complete a request, 3/4 times a week). For me that is his personality - he likes what he likes and it can be difficult to motivate him to do things he doesn’t want to do!

If you're asking if autism is more prevalent than we used to think, which is the less inflammatory question you should be asking, then yes I think the rate of diagnosis should be higher. I am undoubtedly autistic, but was not diagnosed as a child and the current 5 year NHS waiting list is a barrier to me accessing a diagnosis now (Wales, no Right to Choose here).

My daughter has a diagnosis, her older brother is on a 3 year waiting list despite me approaching school 4 times with concerns about him during his time at primary. He's now going through GCSEs awaiting the diagnosis that could give him extra support.

But to go back to your question, I don't understand how you think a greater diagnosis rate would get us out of making the world easier for people with diverse characteristics to live in? Surely the opposite? I would love it if the world was more accessible for me and my children. You say you have a child awaiting diagnosis - you must have some ideas of these barriers?

We can't attend birthday parties - even with loops or ear defenders they're too noisy. We can't go swimming - of the 6 council run swimming pools in our area, none of them offer quiet sessions. We had one special quiet session in the summer holidays which was the first time we'd been swimming in a year. It's my most hated month of the year, October brings massive change to our outside environment and fear around every corner, no safe supermarket visits even.

Everywhere is too loud, too flashy, too busy, queues, people, smells, things to look at, ambulances, fears. The things I have to predict and mitigate for everywhere I go, people looking and staring at the screaming, judging me for my shitty parenting.

And my children are what you would class as the ones who you would deem high-functioning, borderline undiagnosable. If you meet them with their masks on, they're not autistic, just 'normal human behaviour'. We're all great at it. I have a lifetime's experience of pretending to be a human.

It's fucking exhausting and I am utterly broken by it. Your attitude is so disappointing if you truly are a professional.

I've realised it's probably necessary to say (I'd mistakenly thought it would be a given) that I think support, adjustment, understanding and flexibility (all with the required funding) should be available to people who struggle with the difficulties associated with getting/pursuing ASD diagnoses, IRRESPECTIVE of whether the diagnoses themselves are the best ways forward. I was puzzling about the level of anger this post led to, and wondered whether it was that omission that was the problem. So to clarify, I was asking if diagnosing with ASD at an increasingly high rate (as is the case, even if wait lists are long to get the diagnoses) was the best way forward, or if that doesn't in fact do best by the people in receipt of the diagnoses (and everyone else). Not whether people with those difficulties should not be helped/understood.

For example, I know a couple of families where the child was struggling with mainstream school, and the school suggested possible ASD. The children were subsequently removed from mainstream schools, and sent to small, private, supportive, flexible schools, and then began to thrive. They no longer need a diagnosis of anything to get on really well in life (at the moment, at least). The families could access that because they had money, so could change the environment to suit they child. What if that level of support was available to all? For many (not all) kids, isn't it more an environment problem?

What evidence would you then use to demonstrate your difficulties?

My son was referred by school at 12 and got a diagnosis within a year or 18 months or so. He's never liked the label and now at college refuses to list it on forms etc. He did get additional support at school and help with his GCSEs so the diagnosis has been of some use. He comes over pretty NT with a few quirks such as very poor handwriting an affected way of speaking and he fixates on things sometimes but like I say he himself doesn't think there's anything particularly different about him and refuses the label even though it has smoothed a few paths for him at school. If he hadnt been diagnosed his life might have been worse but he'd probably have muddled through like most teenagers. I can understand why those with children with more profound difference and needs might resent because Ng grouped with essentially functioning young people.

One of the arguments, surely, is that "ASD" doesn't actually do much to communicate some people's difficulties anyway (and miscommunicates them for many), as the category has become so broad?

Also - there are many people who have difficulties which don't fit neatly into any of the diagnostic categories. Should they get worse treatment because of this? Or should we have personalised, flexible understanding for difficulties more generally?

It's not just labelling behaviours or traits. Autistic people have physical differences in brain structure and it can be diagnosed via scans, but that's obviously too expensive to be implemented as the standard procedure. Apparently it's preferable to have huge waiting lists to be seen by alleged medical professionals whose knowledge and understanding of autism is stuck in 1980. I'm looking at you, Glasgow adult autism team. My interactions with them were nothing short of traumatising.

It has been shown (through physical examination of autistic brains post mortem) that our brains contain a significantly increased number of synapses as compared to NT people. This, among other things, informs how we experience the world and is the root cause of sensory processing difficulties. When people say we're "wired differently", they're not wrong!

I can't answer your question but I agree that there needs to be reform with regard to the diagnostic process, not least to make it less subjective and at the mercy of ill-informed "experts".

P.S. Can we please not encourage a revival of the term Asperger's? Hans Asperger was a Nazi who personally decided which children should be spared and which were "unfit for integration".

Yes, definite problems with the Asperger diagnosis, for a number of reasons.

There are certainly structural differences, on average, between "autistic" and "non-autistic" brains, but in my understanding it's still difficult to classify any individual brain as autistic or otherwise with accuracy (because of the degree of overlap). Also, even if we could, would this be more useful than dealing with individuals' specific needs, given how varied these are within the category?

Interesting to hear your perspective on potential reform. I think if we're thinking about subjectivity in the diagnostic process, we should also be thinking about subjectivity in the development of the diagnoses in the first place (DSM task force is just a fairly small group of people with opinions - and vested interest, but that's another thread!).