Kathy Lette's new novel, The Boy Who Fell To Earth, which will be coming out shortly in paperback, deals with the trials and tribulations of a harassed thirtysomething mother coping with her autistic son. Kathy herself has written an entertaining, insightful article about the trials and tribulations of a fiftysomething mother (herself) coping with her own autistic son.
Fine.
So why am I pissed off?
Because (and this hit me like a quiet hurricane, if that's possible), Kathy and many other commentators, websites and Facebook pages seem mainly to be concentrating upon autistic children and young people.
The opening lines of many posts speak for themselves:
My 8 year old daughter was recently diagnosed...
What's it like for kids whose siblings have autism...
How can I help my child if she won't verbalize?
1 in 50 school-age children are affected by autism spectrum disorder...
This is laudable, heart-rending and worthy, so what's the problem?
Answer: young children grow up and young people grow older, and they stay autistic.
I was an autistic child, I was an autistic young man, now I'm an autistic middle-aged man. Sooner or later I'm going to be an autistic old man. Over the last few years, as I grew more aware of autism's trials, tribulations, advantages and disadvantages, I noticed that there seemed to be a vague generalized assumption that kids and young people sort of grow out of autism.
Well guys, we don't. And that's why I'm pissed off.
I empathize with parents struggling to support, diagnose and educate their remarkable and often maddening offspring; and I understand the need to recognize the desperate situations some overstressed Mums and Dads find themselves in. But I also fear that in the frantic scramble to help autistic youth successfully reach adulthood the ongoing problems of what happens next, of how an adult with autism is supposed to cope, have perhaps been slightly overlooked.
The National Autistic Society Scotland (NAS) recently launched a campaign entitled Count Us In: it pays to listen which did indeed highlight the fact that although services for children are improving there is still a real gap in support for adults.
To make the statistical case:
79% of people with autism think public understanding of autism is poor or very poor, 69% of adults with autism haven't had an assessment of their needs since they turned eighteen and 66% feel they don't have enough support. As 33% of autistic adults in the UK have had severe mental health problems because of a lack of help, as only 15% have a full-time paid job and as it can cost over three million pounds to support each adult with high-functioning autism throughout his or her lifetime (there are at least 433,000 autistic adults in the UK), about 1.299 million million pounds will be needed to help people who, if given the chance, might be capable not only of helping themselves but also, to now make the emotional case, to change the world.
Think I'm overstating the emotional case?
Think about it.
Isaac Newton, Thomas Jefferson, Lawrence of Arabia and Albert Einstein may all have been adults with autism.
So what did they do?
Just discover gravity, help found America and write the Declaration of Independence, help lead the Arab Revolt against the Ottoman Empire, develop the general theory of relativity...
If it will cost us many millions merely to support such individuals, what might it profit us if we help them develop?
Attitudes need to change. In my own case, a newspaper editor took a wrecking ball to my confidence and self-esteem, a tutor sadistically informed me that I "didn't listen and didn't learn" and a large public sector organisation pushed me to the brink of a nervous breakdown. It did not have to be this way, but it was, and on the road to writing Dear Miss Landau I took more punishment than Rocky Balboa ever did against Ivan Drago.
Kathy Lette, I understand, wants people with autism to flourish. So do I, and it would be nice to see some lost and forgotten adults on the spectrum come home.
James Christie is the author of Dear Miss Landau. He was diagnosed with Asperger Syndrome, a mild form of autism, at the age of 37 in 2002. He lives and works in Glasgow.