Uta Frith

Naomi Fisher Verified account @naomicfisher · 6d

The people who are being given an autism diagnosis have changed. This is a massive study, looking at people in Sweden and the UK diagnosed with autism in adulthood. What they find, apart from a huge increase in the number of people being diagnosed (and many more women being diagnosed), is that the people themselves are different.

Previously, adults who received an autism diagnosis were more likely to have a prior history of epilepsy, intellectual disability or psychotic disorders. Now, they are more likely to have a history of anxiety, depression, ADHD or other symptoms of emotional distress.

This is in line with what clinicians have been saying for a while. Mental health problems, which were previously seen as psychological or emotional in origin, are increasingly being seen as neurodevelopmental, and therefore due to brain differences. Autism is the lens through which our culture is seeing distress.

This has serious implications, because autism is seen as untreatable and lifelong. Mental health problems such as anxiety or depression are seen as treatable. Recovery is possible. By bringing so many more people under the autistic umbrella, we tell them thatthey are wired this way. That’s a powerful explanation because it can bring relief and self-acceptance - but it can also bring hopelessness about change.

We aren’t discovering more of the original type of autism which was there all along, we have changed what autism means. The important question is, what is the impact of diagnosing so many more people, and it is helping them to better live the lives they want?

mentalhealth.bmj.com/co…

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Naomi Fisher Verified account @naomicfisher · Oct 30

There is a (usually) unstated problem in interpreting research about autism over time.

The way that autism is diagnosed changed. Not just a few tweaks, but dramatically and emphatically. It has changed so much that people from the 1980s and 1990s would not recognise most of the people diagnosed today as autistic.

Not because we got better at detecting autism (because autism is just a descriptive category, there is nothing underlying to detect), but because the criteria changed and expanded to include more people.

This means that a study of autistic people from 2010 will be using a different definition of autism to the one we use today. It means that seminal studies from the 80s and 90s do not apply to the majority of people diagnosed with autism after 2013. This isn’t a flaw in the earlier research. It doesn’t mean that their findings have been debunked. It doesn’t mean that the earlier definitions of autism were right and the more recent are wrong.

It just means, autism meant something different in the past than it does now. Without acknowledging that, I don’t see how we can start to make sense of what’s happening.

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Naomi Fisher Verified account @naomicfisher · Oct 30

I read a book about neurodiversity recently which claimed to be inclusive.

It was inclusive in many ways. The people whose stories were in those pages were racially and ethnically diverse. They had different sexualities and gender identities. They had a range of different backgrounds and careers.

What was missing was anyone with intellectual disabilities. Anyone who lived in a residential setting. Anyone who had attended a special school as a child and had never learnt to read or write. Anyone who lived in a non-western country. They weren’t just missing, there was no reference to them at all.

And, crucially, it was not inclusive of anyone who disagreed with certain ideological premises. No one who thought that we need subgroups in the autism spectrum, for example. No one who thought that perhaps overdiagnosis might be a problem. No one who questioned what neurodivergence actually meant. No one who argued for functioning labels.

Despite the claims of inclusivity, it was a strangely homogenous group. And here is one of the paradoxes of neurodiversity. There’s the appearance of diversity and inclusivity, but there’s a conformity of opinion. Everyone is singing from the same hymn sheet. Book after book is published with exactly the same assumptions.

Humans are social beings and we want to fit in. We learn to do this by watching what happens to those who don’t. It’s just too risky to do anything else. Don’t mistake this conformity for an objective truth. It’s a bit more complicated than that.

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