If your child attends public school, chances are they have a classmate who has difficulty speaking, behaves a little differently, or just doesn’t seem to socialize well.
A generation ago, we might have called these kids quirky, and that would have been the end of it. But today, an alarming number of these kids are being diagnosed with what’s called autism spectrum disorder.
A decade ago, the prevalence was one in 250. Today, it’s closer to one in a hundred. We still don’t know the causes of autism, and so there’s little hope of a cure.
Over the next five days, NHPR correspondent Sheryl Rich Kern is going to be looking into the issue, in a series called Challenges of Autism. She starts the series with simply trying to define what autism is.
(sounds of dad calling for the dog)
Mom: I don’t know where the dog is.
Curtis: get him in before lightning strikes.
(more sounds of dad calling for the dog)
Curtis Glover reminds his parents what they need to do as a thunderstorm approaches.
Glover is 19. When he was eighteen months old, doctors told his parents he was autistic and that he may never speak.
Sandy Glover: "He hated being held, he hated being nursed. When we would lift him up and do all those silly faces, he would immediately look up at the ceiling or at a light because we were oversensitizing him."
That’s Glover’s mom, Sandi Glover. She says that when she brought Curtis to Children’s Hospital for a diagnosis, the doctors weren’t optimistic.
Sandy Glover: "They told us he would never be potty-trained and that he would probably never be able to reciprocate love."
Curtis Glover: "That’s just terrible. They even told my parents not to be too connected to me. And it turned out I was not a worst-case scenario."
Sandy Glover: "You were far too stubborn for that (laughs)."
The signs and the spectrum
Dr. Stephen Mott is a pediatric neurologist at Dartmouth Hitchcock Medical Center. He says children like Curtis, diagnosed before they’re three, stand a better chance of functioning normally because they’ll get therapy before they start school.
And says Mott, fortunately, more children are getting the help they need because pediatricians and teachers are noticing the signs.
Mott: "Autism is a disorder of social interaction. They prefer to play by themselves. Are they able to turn-take, not only wanting to play the same things over and over again? They’re sometimes described as being in their own world."
Classic autism was once considered rare. But that was the one in ten thousand occurrence of a child who couldn’t speak and would bang his head against the wall.
Science now speaks of a range of autistic behaviors, called autism spectrum disorder. Remember the classmate who studied quantum physics but never laughed at anyone’s jokes? Or the guy who could memorize batting averages, but didn’t know how to read people? It may be that they fall somewhere within that spectrum. They just seem to be wired differently.
That neurological wiring doesn’t necessarily make them disabled. They just have a different way of processing information and responding. They may develop language, but not understand social cues. They may have intense interests or compulsive behaviors. Symptoms can vary from mild to severe.
Lots of theories speculate on the causes: vaccines, environmental pollutants, nutrition. But the science is not conclusive. Researchers do agree, however, that genetics play a role.
Dr. Stephen Mott: "Of all the neuro-developmental disorders, autism has the strongest component where identical twins have the same diagnosis. Within families, there are other members that have autism."
Whatever the triggers — whether they’re environmental or genetic — the number of people disagnosed with some form of autism is on the rise. Mott says that’s most likely because we’ve broadened the criteria.
Mott: "I also am skeptical that there are some children being diagnosed with autism that really don’t have autism. Children with severe attention deficit disorders do have difficulties recognizing social cues because they’re not attentive to them. Yet when you catch a child and they’re focused, they can have good interactive play with their peers."
"Not everything that is autistic is bad"
Over the last decade, the incidence of autism has been rising between 10 and 17 percent a year.
While most advocacy groups want the government to do even more, others are saying we’re spending tax dollars on the wrong issues.
Ari Ne’eman runs the Autistic Self-Advocacy Network. Ne’eman has Asperger’s Syndrome, which is a high-functioning form of autism. Ne’eman (more) says he wants to put research dollars behind improving quality of life, rather than finding a cure. Autism, he says, is not a curse.
Ne’eman: "The way my brain works is inseparable from who I am."
Rich-Kern: "If there was a pill to make you not autistic, would you take it?"
Ne’eman: "No, not everything that is autistic is bad and not everything that is normal is good. We can strive for good things and strive to avoid bad things without saying autistic kids should be as normal as possible. Normal shouldn’t be the goal. Happy should be the goal."
This year, more children will be diagnosed with autism than with juvenile diabetes, cancer, and AIDS combined. That’s putting a huge demand on agency services, and in particular schools.
To get kids identified early, train specialists and develop therapy programs, New Hampshire has received four million dollars in federal education funds.
Specifically, The Combating Autism Act of 2006 authorizes $920 million in federal funding over the next five years for basic research, surveillance, public awareness, and early identification initiatives.
Ne’emanwas recently appointed to the Interagency Autism Coordinating Committee, a research committee established by the Combating Autism Act responsible for advising federal research funding related to autism.