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Graham Findlay would gratefully trade autism's new-found fame for a decent deal for his son.

Thursday 27 May 2004 00:00
You have to admire people like me. Being a disabled parent of a 12-year-old boy with an autistic spectrum disorder places me in the current canon of unsung saints. I think this is a result of a new awareness around autism, which has probably reached its peak with the success of Mark Haddon's novel, The Curious Incident of the Dog in the Night-time, about a boy with Asperger's syndrome. And, of course, the MMR debate.

But the flip side to this is that the highbrow media has now begun to construct the "super parent" who can handle a career, family life and a child with autism with deft aplomb. Promoting this as the norm is wandering into dangerous territory. My son's reality - and his impact on his family - is naturally far more complicated. Much of my spare time and that of my partner is spent getting the system to remove barriers and begin to provide the services he needs.

Take education. It took years to get the head teacher of his mainstream school to acknowledge that his withdrawal in the classroom was more than just naughty or singular behaviour and to start dealing with the problem. It took a further year to get a statement of special educational needs, which we had to initiate ourselves, and one more to have him correctly diagnosed as having an autistic spectrum disorder. We then had to fight for a place in an out-of-county school which specialised in meeting his educational needs instead of one in the cocooning environment of the local special school. Thankfully, he is now in the right school, but I still regret the lost opportunities - the benefits that early intervention would have had on his social communication skills and development.

In my county, area social services support is scant for autistic kids who have an IQ above 70. It infuriates me that some local authorities prate of social inclusion and valuing diversity while simultaneously keeping whole sections of disabled people away from services by using crude, medicalised IQ indicators. What we need is a spectrum of support; what we get is six hours a week. Helpful as it is, we are regularly reminded that we are lucky to get this. Oh, and please don't tell other parents and families in case they ask for help too and overwhelm us.

This is the reality of living with a child with autism. It is not cuddly; it is tough, challenging, stressful and often humorous. I can deal with the tantrums, the rages, the occasional violence, the running away. I don't even mind being occasionally admired. What I can't handle is a system that is supposed to deliver on my son's rights to services but instead puts obstacles in the way.

I wanted to go to a three-day international conference on autism being held in my home city recently but couldn't. I have stay at home to look after my autistic son because I have no support services.

Graham Findlay is a disabled parent.
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