The big news today in special needs land was a new CDC report showing more than a 20 percent increase in autism rates. As reported in the NY Times, “The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders (ASD), by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.”
And just how did the CDC determine that autism rates have increased? They used data from The Autism and Developmental Disabilities Monitoring (ADDM) Network, which reviews children’s evaluation records at 14 different sites to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. Much of the increase is attributed to increased diagnoses of ASD among Latino and African-American children.
Of course, everyone is asking if this is just an issue of growing awareness, and a thus a larger number of children diagnosed with ASD, or is it indeed a “real” increase? This dilemma was summed up well by Dr. Thomas R. Insel, Director of the National Institute of Mental Health who wrote in his blog today: “Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?”
As my friend Judy Mark, Government Chair of the Autism Society of Los Angeles, says, “While it is important to ask why there is such a significant increase in the prevalence of autism, at this point it is more important to ask how we serve this enormous population—are we providing enough and the right kind of services? Are we providing enough early intervention (which, in California, has been cut back significantly in the past few years)? What are we going to do when these 8 year olds become adults?”
In my own professional work with both the Alzheimer’s Association and now the American Diabetes Association, I have learned that policy-makers and elected officials are often more focused on funding the cutting-edge research and possible cures for a disease instead of funding the nitty-gritty social services/supports so badly needed by any family who has a loved one with a chronic, complex condition.
What the increase in numbers really means is that more and more families either are, or will soon be touched by autism spectrum disorders. Consequently, this dramatic increase in numbers will impact government funding, medical providers and our own Jewish community. The need for inclusion, support and services has never been greater yet government funding is being cut on every level.
Closer to home, how can our Jewish community do more to help families with a child, teen or young adult with autism or other special needs? Empathy, not pity, is a great place to start. Putting yourself in someone else’s place is never easy. But we have a great guide. With Passover just days away, this is a good time to pull out the Haggadah, and think about why we hold a seder in the first place—to feel ourselves taking the exodus out of Egypt. As Cecil Roth comments in my favorite version of the Haggadah:
“The observance does not celebrate a long-past shadowy event of remote significance. It is an actuality. We do not celebrate the deliverance of our fathers alone, but our own freedom as well.”