More on Autism @ Whitehouse.gov

In yesterday's Guardian, Mark Lever, chief executive of the National Autistic Society, writes about a new autism bill that has been chosen to be taken forward for parliamentary debate. The bill calls for the need to

• strengthen information about the numbers of people with autism and their needs, in order to improve local planning of services
• improve inter-agency working to secure effective transition for young people with autism who are moving from child to adult services
• ensure access to appropriate support and services for people with autism in adult life

The autism bill is focused on services, on access to those services and on assisting individuals on the spectrum in transitioning among programs as they age. This is a much needed focus in discussions about autism issues which have tended to be primarily about children (and quite young children at that), and how early detection and early intervention might best serve them.

This tendency to focus on autism in (young) children is apparent in an article in yesterday's US News & World Report about the section about autism at Whitehouse.gov. The autism section is under the agenda item of Disabilities at Whitehouse.gov.

Dora has already noted the "social todo about the medical to-do" and I was a bit perplexed to read in US News & World Report that

Autism tops Barack Obama's medical to-do list, according to the new president's website. Whitehouse.gov launched at 12:01 pm yesterday, even before the new president had taken his oath of office on the Capitol's West Front. Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda.[my emphases]

Of the "four hefty bullet points" on autism, "Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds" is point #4, though US News & World Report writer Nancy Shute refers to it as "the biggie." If children are diagnosed earlier, she writes, they can then start treatment which will be "more effective"; a national screening program would, it is said, "help reduce the number of kids falling through the cracks."

My own son was diagnosed just as he was turning two years old in 1999 and getting him started at a young age in educational therapies and treatments was crucial----and just as, if not more, important are support services (noted in item #1 at Whitehouse.gov on autism) and in particular life-long services for children and adults with ASD (noted in item #2 at Whitehouse.gov on autism). There's much that Charlie has learned, and continues to learn, as he has gotten older. He's got a whole life ahead of him to live: Getting diagnosed was an important first step, but just the very, very beginning.

It's time to focus not only on autism as something affecting children and young children in particular, but as a lifelong disability. Different individuals on the spectrum will need different levels of support throughout their lives, but a focus on the road ahead---a long-term view----on the needs of adolescents, teenagers, and adults is absolutely necessary, and starting right now.

Photo by dmyze11.