Heroes and villains

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.