Northjersey.com: 'There's a tsunami of these kids coming'
The recent Los Angeles Times series by Alan Zarembo has drawn all kinds of criticism in the autism community. Personally speaking, I'm at a loss to understand how a leading U.S. newspaper could so willingly turn its back on the sufferings of a generation of children. Zarembo set out to convince us that autism has always been around and that there's nothing to be alarmed about with hundreds of thousands of children now diagnosed with a disorder no one heard about 25 years ago.
Lacking any real proof, Zarembo made the claim that experts just used to call autistic people something else or they just missed them all together.
Autism Hidden in Plain Sight
Over the last two decades, estimates of the autism rate in U.S. children have climbed twentyfold. Many scientists believe the increase has been driven largely by an expanded definition of the disorder and more vigorous efforts to identify it.
Scientists are just beginning to find cases that were overlooked or called something else in an earlier era. If their research shows that autism has always been present at roughly the same rate as today, it could ease worries that an epidemic is on the loose.
The explanation for the boom lies mainly in social and cultural forces, notably a broader concept of autism and greater vigilance in looking for it.
Autism Boom: An Epidemic of Disease or Discovey?
Identifying it as early as age 2, in the hopes of diminishing its symptoms through treatments that are now widely available.
"It used to be that autism was the diagnosis of last resort,'"said Catherine Lord, director of the Institute for Brain Development at New York-Presbyterian Hospital and a leading authority on autism diagnosis. "Nobody wanted it. Now it is seen as preferential."
On the severe end are children who in the past might have been considered mentally retarded, schizophrenic or even psychotic.
Anyone paying attention can easily see that Zarembo's work has no relationship to what's happening in the real world. Within a day of the last Times piece Northjersey.com published the story, NJ autistic adults lack programs by Harvey Lipman . HERE
New Jersey suffers from a severe shortage of programs geared specifically to the needs of adults with autism. That situation is likely to get considerably worse in the near future, as large numbers of autistic children graduate from special education and will likely need adult services. To make matters worse, a state policy designed to give families of developmentally disabled adults more control over care options actually denies non-profit agencies the seed money they need to create new programs.
New Jersey has the highest documented childhood autism rate in the nation; a Centers for Disease Control study in 2007 found that 1 in 94 kids in the state has the condition. Many of those children, if not most, will need continued services as they grow into adulthood. And the programs for adults with autism are few and far between.
"There's a tsunami of these kids coming and there are not nearly enough programs," said Carolyn Hayer, a Hackensack advocate for community programs whose son Chris is autistic. "To invest all that special-education money in these kids and then leave them at home watching TV is criminal."
I especially noticed comments in the piece like, "the only program his mother could find hardly met his needs either,"
"The need is huge," said Toli Anastassiou, program director at Quest, which has eight young adults enrolled in its program. "We're capped by our physical space. Our waiting list would easily allow us to double our size."
"And that waiting list would be even larger, he added, if families desperate for services didn't drop off it to accept spots in programs that aren't geared to helping the autistic."
Alan Zarembo claims that autistic adults have always been here, in his words, "hidden in plain sight." So what is Harvey Lipman talking about? It should be Lipman's job to convince mothers like Carolyn Hayer that there's nothing to worry about regarding the future for their children. There is no approaching tsunami. Autism has long been a normal part of the childhood landscape. Young adults with autism will go where autistic adults have always gone. More significantly, if the Times series is right, New Jersey has done an abysmal job of addressing the needs of both autistic adults and children in the past. The system has a lot to answer for.
Anne Dachel is Media Editor of Age of Autism.