It turns out that a lot of people are autistic.

The numbers may come as a shock: out of the 739,414 people who currently have a National Disability Insurance Scheme (NDIS) plan, 45% cite autism as their main disability. ‘Intellectual disability’ and ‘developmental delay’ combined make up another 27%, meaning that these three categories of impairment account for 72% of all NDIS plans.

Not all of those people are children, but many are. According to the NDIS’s most recent quarterly report, about 26% of NDIS participants are under the age of 9, and among them, autism is the most common diagnosis.

This week’s announcement of the ‘thriving kids’ program for children who are autistic, or who have milder forms of cognitive impairment, or both, makes the most sense when seen through the lens of those numbers. The goals of the scheme, however, aren’t yet clear, nor is what it will actually offer to autistic children and their families.

When I was at primary school in the 1980s, nobody was autistic. Today, several decades later, I know that my cohort must have been full of autistic children. Our parents and teachers just didn’t realise it at the time.

I should know. I’m one of them.

By the time an adult decides to go for an autism assessment, they already have a good idea of what the result is going to be. All the clues — a lifetime of cutting the scratchy tags out of clothes, getting in trouble at work for ‘communication skills’, experiencing the deep joys of passionate interests — are ones they’ve already pieced together. Pattern recognition, after all, tends to be one of our strengths.

I’m unusual in that respect. When I was diagnosed, I had no idea I was autistic. I was seeing a psychiatrist to try out a new ADHD medication (until very recently, only psychiatrists were allowed to prescribe ADHD drugs), and he mentioned it in passing. I’m still not sure whether that constitutes an ‘official’ diagnosis or not, but looking over my own collection of tagless shirts, I know he was right.

It’s reasonable to ask how this is even possible. How can it be that some autistic people are profoundly disabled, and others are affected so little that they don’t even realise? What commonality could I, a skilled professional with a happy, thriving family, have with a person who will never speak? Or maybe even be able to use a toilet independently?

The answers are frustrating, because they are — still — patchy. Not as patchy as they were in the 1994, when psychiatrists first realised that autism could be ‘mild’ and called it ‘Asperger’s syndrome’ (a label that has since been revoked), or 1980, when ‘autistic disorder’ was classed as a psychiatric disorder for the first time. Definitely not as patchy as in 1952, when autism was (along with many disorders) classified as a kind of schizophrenia. But patchy nonetheless.

Our knowledge of what autism is and how it works, along with our knowledge of who is and is not autistic, remains incomplete. There are, however, some ‘known knowns’ you can rely on.

Firstly, the autism ‘spectrum’ is not a spectrum of ‘less autistic’ to ‘more autistic’. It’s a spectrum, more like a rainbow is a spectrum. Many people use the analogy of an audio mixing desk, with different sliders for different sound effects: some autistic people have the slider for ‘sensory sensitivity’ (those pesky clothes tags) pushed up, and the slider for ‘cognitive empathy’ — the ability to understand what another person is thinking — pushed down. Cognitive empathy is wholly different from emotional empathy — the ability to understand what another person is feeling — which many autistic people have, if anything, too much of. Many of us are so sensitive to injustice that we experience it as a kind of pain. Quite a few have poor proprioception, the awareness of where our bodies are in space, leading to clumsiness. Some have slow cognitive processing speeds, some have slow auditory processing speeds, and some have both.

There is no such thing as a normal autistic person: we are, frustratingly, all unique.

The intrinsic heterogeneity of autism has, in fact, been one of the barriers to identifying it correctly in people. The first people to be described as autistic, starting with Dr Kanner and Dr Asperger in the 1940s, were profoundly autistic, so much so that subtle nuances like missing social cues were never part of their lives. They were also, without exception, men and boys — meaning that descriptors of autistic presentation were gendered from the start.

The flood of adults, and especially adult women, getting diagnosed now didn’t come from nowhere. They came from and through eras — the ’70s, ’80s, ’90s, and yes, 2000s and 2010s — in which mental health practitioners had never been taught about them because there was no knowledge to teach.

Today, most of the people with ADHD I know are realising they are also autistic, and the autistic people are realising they are ADHD. This would have come as a surprise to the psychiatrists of just a few years ago — until 2013, the two diagnoses were thought to be mutually exclusive. That is just one example of how recent, how incomplete, and how volatile our understanding of autism is.

Even more recently, autistic people of all genders (many of us are gender divergent and trans, which is another still-emerging slider on the mixing desk) have started to note that there’s something very particular about the diagnostic criteria that medicine uses to identify us: a lot of them look like trauma responses. It isn’t necessarily clear what autism looks like in the absence of trauma, because most of us grow up traumatised by how we are treated and what we have to do to ‘fit in’. The diagnostic frameworks reflect that.

We can say, definitively, that ‘everyone is a little bit autistic’ is not a true statement. Autistic mindsets and behaviours are the visible result of neurological differences, and yes, they are unique to us. The people who tend to say ‘everyone is a little bit autistic’, however, tend to have something in common: when they look at autistic attributes, they see them as being pretty normal.

If that’s you, you may have a surprise in store. I did.

An increase in levels of diagnosis of autism in recent years does not mean an increase in actual levels of autism, but nor does it not mean that. It may well be that more people are autistic now than they were at earlier points in history — we don’t, and can’t, know.

While it is true that the autism spectrum is not a spectrum from ‘less autistic’ to ‘more autistic’, it is also true that, actually, it is.

Some of us, for reasons that are not yet wholly clear, are vastly more disabled by our autism than others. Psychiatry divides us into three groups: People at Level 3 have high support needs, at Level 2, medium, and at Level 1, low.

‘Low support needs’, however, is not ‘no support needs’.

Autistic people really do have needs that allistic people don’t, and those needs persist across a lifetime. How best to meet those needs, especially for children, is fraught with controversy. ‘Applied Behaviour Analysis’, for example, was long seen as the gold standard for ‘treating’ autism. Today, it is largely seen by survivors as a form of abuse.

We don’t know yet what the ‘thriving kids’ program will entail. We do know it will take a lot of expenditure out of the NDIS’s books, creating two line items where previously there was one.

We also know that diagnosis and support for autism that does not accommodate the intrinsic and ineradicable diversity of the autistic experience will fail. We know this because it always has.

I’m hopeful that today’s autistic children might grow up to be the first generation of non-traumatised autistic adults. I also have no idea what that would look like.

Will ‘thriving kids’ help towards that goal?

Maybe. Like the nature of autism itself, we just don’t know yet.

from https://www.themandarin.com.au/298611-autism-and-the-ndis-raises-more-questions-than-answers-still/