By Anne Dachel
My friend Maurine Meleck, dedicated autism activist, had this letter to the editor published by the Jacksonville (FL) Times Union.
Every April we live the fantasy surrounding autism with blue lights, walks, and puzzle pieces. We’ve been conditioned to think all this is significant. Somehow there’s no need to worry about a disorder overwhelmingly affecting children with no known cause. The fact that the rate keeps on increasing is just more of the mystery.
Maurine points out the obvious and ignored truth: AUTISM WILL BURY US.
The cost of this disaster will be dumped on the states. While federal officials continue to scratch their collective heads over autism, state governments will have to provide for adults who will live long lives dependent on social services. The autism bill will come due very soon.
We must address autism in a realistic manner
The authors of a recent article urging employers to hire more people on the autism spectrum because it makes good business sense stated that individuals with autism may “differ dramatically from one another.”
This statement is very true.
But the individuals cited in the article are all high functioning and capable of holding full-time jobs; many of them are well-educated and have performed outstanding services.
The number of such high functioning individuals, however, pales in comparison to the number of those with autism who are not able to work — a significant percentage of them will never be able to live independently, let alone hold a job. That’s why constantly referring to autism as “just being a little different” does a great disservice to those of us raising children who don’t fall into the high functioning category.
It is an epidemic.
Last November, for example, the Centers on Disease Control and Prevention changed the autism numbers to 1 in 36 diagnosed on the spectrum.
But while the numbers continue to expand and the costs associated with care continue to rise, services for these individuals keep shrinking year after year. This year there are 35,000 Florida children and young adults on the Medicaid waiver waiting list — and there has been an explosion in the number of special education classes in Florida and across the nation.
Once these children age out of school, it is often up to the families themselves to provide for their needs. The question on our minds every single day is this: “What will happen to my child when I am gone?”
We must take a realistic look at what has happened to a whole generation of children — so that we can end the epidemic while also better serving those already affected.
Maurine Meleck, Ponte Vedra Beach