ON A MISSION: Lessons Learned by Katie
photography by Fran Collin
Don't wait! Get a referral to a developmental pediatrician. The earlier a child starts to receive services and treatment, the better the prognosis.
How do you cope with the stress?
When we got the diagnosis, I went crazy. I couldn't stop running. I began jogging to work off my frustration and sense of helplessness. I still jog, and I've become addicted to reading about autism, mostly accounts from other parents. This empowers me, because physicians understand so little.
Isn't it hard to avoid self-pity?
I don't let myself think, Why did this happen to us?
I think, Why can't anyone help us? This is a time bomb! We need a whole lot more help scientifically and medically. Research costs enormous amounts of money, but in the future it may cost the federal government much more to keep these kids in homes. As Christopher Reeve said, "If you don't want to think about me, think about your pocketbook."
What about parents who cannot afford or get their child into a special school?
Then it becomes a system of patchwork therapy in the home, and the parents are isolated. The best thing they can do is go on the Internet to find a local autism chapter and to research what the child is entitled to under the Individualized Education Program. Autism Speaks is developing a "First 100 Days" area on its website, autismspeaks.org, to help with referrals to doctors, lawyers and so on.
What can other family members do besides help financially?
Get educated about autism. Provide as much emotional support as possible. And don't distance yourself from the child! When my mother took Mattias to the [Radio City Music Hall] "Christmas Spectacular," she also came to the apartment to spend time with Christian.