Autism is Everywhere!

The other day I got particularly fired up after reading a newspaper article suggesting that autism in UK was being over-diagnosed. Apparently it's the trendy thing these days! The article absolutely infuriated me because in my day-to-day life what I am confronted with is not over-diagnosis, but people who suspect they are autistic, but have yet to get a confirmatory diagnosis; adults diagnosed late in life, after years of damage has been done due to misdiagnosed mental health conditions; and parents of children with difficulties that are clearly autism, or something very like it, but are stuck in huge waiting lists waiting for assessments. 

We have to be careful about basing our assumptions on what we see around us - autism is my 'Special Interest' as we call it in the autism world, so of course I notice it more than perhaps other things (I've been known to walk into lampposts because I've spotted a child across the street and am wondering if they're autistic, from their unusual behaviour). But in this case, the statistics bear me out: In the 1930s when Hans Asperger first identified a form of autism we later called Aspergers Syndrome (later merged into a more general diagnosis of Autistic Spectrum Disorder), he estimated that it occurred in about 1% of the population. 

Later research by people like Prof. Lorna Wing, in UK, in the 1980s, confirmed this assumption and demonstrated it affected between 1-3% of the population. Later studies put it as common as 1 in 36 people [citation needed]. Population studies where they take thousands of people, at random, and investigate them for signs of autism, such as the Millennium Cohort Study 2000 (aka "Child of the Century Study" which investigates over 19,000 children born in 2000) have confirmed these estimates. 

The significant point is that study after study, since the 1930s, are coming up with similar figures, in numerous countries. Hence, we currently estimate that approximately 1-3% of the population are on the Autistic Spectrum. 

It is not true to say that "Everyone is a bit autistic" - autism is a spectrum condition (it varies hugely in individual's strengths and weaknesses) but still, there is a clear cut off between "eccentric" or "nerdy" and actually autistic. That cut off is the point at which autistic traits impinge on a person's life, in all areas of functioning: home, work, school, social life etc. So, for example, I was diagnosed with autism because I struggle with all of those aspects - even though I have a great family and lots of friends, it has been hard work to establish those relationships. It takes me a lot of work to build friendships and work/school relationships are even harder. 

This 'impairment in social functioning' criteria is a little context dependent however - a while ago I heard a talk by Prof. Simon Baron-Cohen in which he said that many Oxbridge dons in maths or physics showed significant autistic traits, but did not seem to suffer from much impairment - they lived in college, were fed meals by the refrectories, had housekeepers to tidy their houses, their laundry done for them... or they were married and had spouses who did that for them. Baron-Cohen's hypothesis was that Oxford and Cambridge colleges may represent, in some ways, the perfect autistic environment for these highly accademic individuals.

But to my mind this perfectly illustrates the Social Model of Disability, which sees disability as something done to an individual with impairments, by a society which only sees one way of doing things. So, for instance, a wheelchair user is 'disabled' by architecture that does not include ramps and wider doors because the architect and planners do not consider the needs of people in wheelchairs.

In a perfectly adapted, accessible world, being a wheelchair user would arguably be a lot less difficult ie less disabling. So, an autistic individual, in an autistic friendly enviroment, like a Cambridge maths department, is still autistic (although it might be harder to prove and give them a formal diagnosis). The diagnostic criteria however are based on a 'typical' environment and in my experience, typical environments are not at all autism friendly. 

So even if 1-3% of the population are autistic, perhaps it is still over-diagnosed? After all, it seems like every other person claims to be autistic these days! Well, no. The number of diagnosed autistics in the UK at the moment (ref. Ambitious About Autism, NAS etc) is 100,000.  The number we'd expect to find? Between 700,000 and 2.1 million cases. It is clear that at best, we are picking up 1/7th or 14% of actual cases. In no universe is that over diagnosing! 

The article implied that teachers and parents were pathologising kids who were just a bit different or excusing bad behaviour and bad parenting. Which was extremely offensive to those of us on the autism spectrum, and parents of autistic kids (I'm in both categories). But perhaps the worst thing about the article was the way it pathologised autistic people and bought into all the horrible myths that should have died out years ago: of autism as invariably profound impairment; as autistic people who are 'not like us', tragic, suffering... and most of all, rare. 

So why would the paper want to print an article, not backed up by decent science, which contradicts pretty much every study? Because it's 'controversial' and therefore attractive to a paper trying to get more readers? Because it buys into readers' prejudices that there is just too much autism about these days? Or perhaps, just saying, that the idea of 2.1 million people demanding better services for autistic people, more support in education and employment, more money in the NHS for diagnosis and post-diagnostic support... Maybe the idea of hoards of us, many of whom can vote and can protest our ill-treatment, is a little bit terrifying to the Powers that Be?