Autism is being diagnosed all over the place right now. There’s been an explosion in the number of cases, we’re told. This could be something to do with better diagnostic tools, and it’s hard to argue that more media coverage of mental health isn’t a good thing. But the scientific community still know little about this mysterious condition and how and why it affects certain people.
And that’s a problem for me, because – according to the textbooks – I have an ‘autism spectrum disorder’.
I’m not happy with that label, so I feel perfectly entitled to ask: has the definition of autism become too loose, to the point where it has so many symptoms that you can’t even define it?
First, some personal details. My life changed forever on April 11, 2002, when I was 13 years old. That warm spring night was the beginning of a massive nervous breakdown. I collapsed, crying on the floor. I was so out of control that my parents took me to the local ER room in Ottawa (I’m Canadian). The next day I went to see a child psychiatrist. She did some tests and asked me and my mother to tick some boxes.
The diagnostic was clear and quite scary. I had something I’d never heard of, and most people hadn’t back then – Asperger’s Syndrome (AS). According to the American National Institute of Neurological Disorders and Stroke:
Children with the disorder will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion. They may approach other people, but make normal conversation difficult by eccentric behaviors or by wanting only to talk about their singular interest.
That wasn’t very flattering, but I could recognise aspects of AS in my behaviour. And it was reassuring to discover that it often goes hand in hand with high intelligence: my colleague Damian Thompson has written a post about its hotly debated association with genius.
The next few months were a nightmare – literally. I was seeing things in the middle of the night. I was depressed, disorientated and juggling the medications meant I gained an enormous amount of weight and my breasts became bloated. Needless to say, that led to intense bullying at school. Then, for no reason I could work out, I had another breakdown – this time so aggressive that I was sectioned.
In the end my condition was brought under control, I graduated from university and got a job as a policy analyst working with people who understood my strengths and weaknesses. I came to accept that I was living with Asperger’s.
Until, suddenly, I wasn’t. Because it didn’t exist any more.
In 2012 it was announced that Asperger’s would no longer appear in the psychiatrist’s ‘bible’, the Diagnostic and Statistical Manual (DSM) of Mental Disorders. DSM-V has abolished it. Instead, Asperger’s sufferers have been put under a new umbrella called ‘autism spectrum disorder’, which lumps us in with autistic people who, in some cases, lack the power of speech.
So now I have a mild or ‘high-functioning’ form of autism – at least, according to the DSM. The change has been controversial. To quote a report in live science.com:
A study, published in April 2012 using a preliminary version of the new DSM-5 autism spectrum criteria found about 75 percent of patients who had been diagnosed with Asperger’s under the old criteria would no longer qualify for a diagnosis, raising the possibility that they could lose access to services, such as special education in schools.
There’s another possibility, and I’m sorry if this sounds like a conspiracy theory. Putting people with Asperger’s Syndrome in the ‘autism spectrum disorder’ bucket is useful to the autism lobby, because it swells the numbers and the word ‘autism’ is better known. It carries more clout when you’re asking for more funding, tax credits and better coverage from insurance companies.
Let me return to the question I started with. Is autism diagnosis spinning out of control? A recent article in The Daily Beast by the paediatrician Russell Saunders asks: ‘What if there is no Autism epidemic?’. Saunders cites Swedish studies showing no rise in autism spectrum disorders. This, he says, pokes holes in the theory – encouraged by the US Centres for Disease Control and Prevention – that ‘we are in the middle of an autism epidemic’, with cases rising by roughly 30 per cent since the year 2000.
This is a complicated subject and I’m not a medical professional, merely a sufferer. But it strikes me as wrong that DSM-V has created a spectrum in which people at one end (suffering from ‘autism’ as it used to be understood) suffer from such enormously different challenges as those ‘high-functioning’ individuals at the other end.
Imagine that you’ve been a Christian all your life and then some ‘specialists’ come along and rewrite the Bible so you’re not a Christian any longer. That’s what it feels like to me.
The psychiatric bible tells me I’m autistic but in my heart I will always have Asperger’s.