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“So what’s going on with autism?” wondered US President, Donald Trump, in a recent discussion with educators at the White House. “When you look at the tremendous increase, it’s really – it’s such an incredible – it’s really a horrible thing to watch, the tremendous amount of increase.” Is President Trump right? Is there a tremendous increase in the prevalence of autism?
Knowing the true number of people with autism is so fraught with difficulty that any bold statements about prevalence should be treated with caution. The fact that every time a diagnostic manual has a new edition the criteria for autism change is evidence of just how difficult it is for diagnosticians to identify autism when the very definition of the term is in constant flux.
There is a clear difference between the numbers of autistic people in existence and the number who are diagnosed with autism. Anyone in the autism community will tell you that autism is underdiagnosed. So how do we know how representative actual figures of identified (diagnosed) children and adults are? The answer is, until we have accurate epidemiological data, we don’t.
A further consideration – say we take the least conservative UK figures which claims a rate of more than one in 100. If the same criteria were applied with the same number of clinicians diagnosing, the same referral rates, and the same levels of autism understanding back in the 1940s when Leo Kanner and Hans Asperger were first writing about autism, how do we know what the rate would have been then? We don’t know, but I bet my mortgage it would be a lot higher than the figures those clinicians were talking about. So the actual rate of increase (or otherwise) is open to question.
We know that more children and adults are being diagnosed today, but we do not know why this might be the case. Is it as a result of a change in criteria? Is it a better understanding from doctors? Is it better recognition that adults have a right to a diagnosis? Is it the growing understanding that women can also be autistic?
Take the latter. There has been an increase in the number of adult women referred for a diagnosis over recent years, and yet presumably few would suggest that this is because more women are being born autistic. It is far more likely that people are beginning to be more aware of how autism might present in women, and a debunking of the myth that autism is a male-only (or exceedingly male-dominated) existence. So we simply don’t know whether or not there has been a “tremendous increase” despite what statistics tell us.
So what if there’s an increase?
And even if there has been a big increase, so what? I don’t mean that in a trite, condescending, dismissive way, more in a “why would anyone refer to increases in autism in a global sense as horrible?” Both the US and the UK spend vast amounts of money trying to figure out what causes autism, but with what goal if it’s discovered? There is a growing concern in the autism community that if a cause is found it could be used to stop children with autism being born. This is not only scary, it is wrong in so many ways. I am not for one second dismissing the extreme difficulties that some people have with autism, but my experience tells me that most of the issues that autistic people face are not because of their autism, but as a direct result of the lack of understanding and support from the rest of the world.
We know for a fact that there are plenty of successful and productive members of society who are autistic – some famous, others just happily living their lives. Again, we don’t know how many there are which causes its own problems, but we do know they exist.
Should we be seeking to put a stop to these people, some of whom are leaders in their own right in their chosen fields? Or should we be investing more research money into developing a better understanding of autism to decrease the problems people face, to reduce the difficulties in accessing education, to get more successful students into university and employment, to better support families, to better understand that autism is not “horrible” for all people? After all, that’s what autistic people are asking for.
Mr President, if you want to understand autism, try talking with the autism community – you may well get a very different perspective.