Autism Isn't Only For Children

I've been writing a lot over the past few months of the struggles (some rather monumental) of my son, who's now an adolescent. I know there are books and guides and more out there, but it often feels like we're completely reinventing the wheel and throwing up our hands to say "now what do we do?" at any and every moment. So many books about autism by parents focus on diagnosis of a young child, figuring out treatments and therapies and and early intervention and finding a preschool or school---as writer Karl Taro Greenfeld points out in an op-ed in today's New York Times:

For purposes of fund-raising and awareness-raising, autism has been portrayed as a childhood disease. The federal Department of Health and Human Services has characterized it as a “disorder of childhood.” There are practical reasons for this: early intervention has been shown to be the most effective therapy. The trend in autism treatment has been to steadily lower the age at which intensive intervention commences — as early as five months, according to some experts. Yet autism is not a degenerative condition; the vast majority of those 1 in 150 children who are afflicted will survive to adulthood.

Greenfeld's recently published book, Boy Alone: A Brother's Memoir, is about his life growing up with his now 42-year-old brother, Noah. The focus on children has also, Greenfeld writes, influenced research and treatment and he notes how Noah's life has been a "grim study" in how scarce resources for autistic adults have been, and are: "We have long since given up any hope that he might continue in adulthood the behavioral therapies that are now considered standard for autistics; unless the family is willing to pay the bulk of the cost, there is very little out there for men and women like Noah."

This is why we've got to urge Congress to pass the Autism Treatment Acceleration Act, which contains specific provisions for creating planning and demonstration grants for services for adults. There's much about Noah Greenfeld that reminds me of my own son. He's got pre-vocational skills, his teacher tells us, but Charlie also still struggles with tremendous behavioral challenges that could make employment in a public setting impossible. He may be 12 and an adolescent, but we've started to think most of all about his life as an adult, as if he is already 42 years old like Noah Greenfeld.

And Charlie's not the only one who'll have many needs, needs to be addressed now. For Noah Greenfeld and many others today, and many more individuals tomorrow.