We must do more to help parents cope with autism
Wednesday, October 29, 2003 (14:32:44)

Posted by sylvia

TERRY WYLDE News.Scotsman.com

No sleeping! No sleeping! Every time I started to drift off, the hand would snatch out and peel my eyelids back.

And the questioning. The interminable questioning. And the screaming. The interminable screaming.

I was never allowed to sleep for more than a few hours a day. No phone calls were allowed. Just the daily grind of questions and screaming and unpredictable behaviours in a never-changing regime. This was my daily existence for 13 years.

My daughter has Asperger Syndrome, a form of autism. To have a handicapped child is devastating, but to have an autistic child perhaps doubly so. There are very few physical signs anything may be wrong, it is often only strange behaviours and obsessions which can alert to the condition.

You have to get used to people thinking you are a bad parent who cannot control your child, doctors calling you over-anxious, even family members dismissing your child as a spoilt brat. Friends shun you, as they cannot cope with the child’s behaviour.

It took ten years of constant fighting and research for my daughter to be diagnosed as having Asperger Syndrome. The system does not want to label your child because it does not want the expense of having to take on the responsibility of education and support.

Diagnosis is a bitter-sweet victory. On one hand, you have the validation that your child is not a badly-behaved fiend, but on the other hand, you have to grieve for your lost hopes, while getting on with the business of doing the best you possibly can.

Love is never an issue, your parental instincts grow even stronger, but no amount of unconditional love will suffice, nor can you do it single-handedly - your child needs a team and the right education.

Experts agree early intervention is the key to future success. But, how easy is it to get that type of help? Almost impossible - you find yourself being blocked at every turn, stymied by so-called experts and why? Because it costs a fortune! In the six years it took to find the right school, and then fight for her chance to be admitted, I lost hope many many times.

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