New Jersey's Initiatives for Autism: The Right Moves?

New Jersey has been under the gun ever since a CDC study suggested that its autism rate is the highest in the US. Of course, that study had some flaws: Alabama, for example, showed the lowest rate, largely because many records were inaccessible. Be that as it may, media attention on autism in New Jersey has obviously pushed some buttons!

According to a brief AP article in Newsday:

...an expert panel will soon begin to study the needs of autistic adults in a state battling America's highest autism rate.

That panel, which is expected to study job training and placement, housing and long-term care, was among the initiatives signed into law Wednesday by Gov. Jon S. Corzine. The new laws are designed to improve detection, treatment and awareness.

They establish a statewide autism registry, train teachers in autism awareness, require pediatricians to screen for autism symptoms, create the panel to study needs of autistic adults, expand funding for autism research and treatment and restructure a state autism council.

...Corzine also signed a law providing vocational, educational and social training to those with Asperger's Syndrome, a developmental disorder featuring autistic-like behaviors.

The Legislature approved the bills earlier this year after the largest U.S. study of childhood autism determined 1 in 152 children have the disorder, including 1 in 94 children in New Jersey.

Most of these actions seem to me to be laudable. There is absolutely no question that services for adults, early screening, and funds for treatment are critical. But I do have some concerns.

For example, if the article is correct, there is no additional funding for autism education. That means that New Jersey will almost certainly have MORE children coming into the system with autism diagnoses - but educational opportunities will remain steady. That's a problem. It's also unclear which treatments will be supported by state funds - and my strong guess is that these new funds will support only those treatments "scientifically proven" to be effective. At present that includes exactly two: Applied Behavioral Analysis or ABA, and the antipsychotic medication Risperdal. These treatments, while appropriate for some, are absolutely the wrong choice for others.

I'm also quite concerned about the idea of an "autism registry." While the idea of anonymous reporting of the disorder makes sense from a record-keeping perspective, the idea of "registering autistics" personally is frightening. Public disclosure of a diagnosis like autism could be devastating to employment and insurance prospects. Certainly, it is important for New Jersey residents to understand the details of this proposal, and to ensure that any such registry be anonymous - and inaccessible to the general public.