Saturday, 30 August 2014

How many Aussies are on the autism spectrum? (And where are they all?)

Some researchers from the University of Queensland have been crunching 20 years' worth of autism research data, and a few weeks ago announced that autism rates hadn't changed in 20 years.

We're not this easy to spot in real life
That's a bold call when the zeitgeist insists our numbers are increasing at an alarming rate.  But Dr Amanda Baxter, from UQ’s Queensland Centre for Mental Health Research, says the analysis proved what a lot of adults on the spectrum have been saying for a long time: it's not necessarily that the incidence has increased, but that we're getting better at identifying people on the spectrum.

“We found that the prevalence of ASDs in 2010 was one in 132 people, which represents no change from 1990,” Dr Baxter says. “We found that better recognition of the disorders and improved diagnostic criteria explain much of the difference in study findings over time.”

It brings up a question I've asked several times, but never had a sensible answer: if I was born in 1980 and diagnosed in 2005, is my diagnosis counted in the stats for 1980 or 2005?  There are people being diagnosed today in their 30s and 40s and 50s and beyond, who couldn't have been diagnosed when they were younger because the condition wasn't recognised as a thing that existed when they were younger. 

I'm interested in this 132 number.  That's less than the 1 in 100 number I've been using - mea culpa, and for the record I got that figure from Aspect

Some maths tells me that means there should be about 470 other people on the spectrum in the city where I live. 

So, where are we all?

There will be a lot who are undiagnosed, either by choice or because they have no opportunity to be diagnosed.  (It can be an expensive and time-consuming business, and can come down to sheer luck.)  If my experience and that of other late-diagnosed folk are anything to go by, they will probably have some sort of diagnosis but it may not be accurate or complete.  Today it might be from anywhere in the DSM - depression, anxiety, AD(H)D, OCD, borderline personality disorder, delete as appropriate - while for older generations it might simply have been an unspecified and uninvestigated intellectual disability.

There will be people who are diagnosed, but keep it to themselves because of the stigma surrounding Aspergers and autism, or just because it's nobody's damn business but theirs.  Often there are good reasons not to disclose, especially if you're looking for work.  But, in a world where autism services start to dry up when you're seven and almost completely disappear when you turn 18, there can be very little reason to be out about it.

There will be people who live independently, who work and are successful in society's eyes.

There will be people who are homeless, who are in the justice system, in the mental health system, in nursing homes, in hostels, in shelters.

And because you can't look at someone and tell if they're on the spectrum we probably walk past each other every day, and don't know.