Stats Show Autism Rising, But Who’s Really Autistic?
Earlier this week the federal government released new data indicating that autism is diagnosed in 1 percent of American children, far more than the 1 in 150 children previously thought to be affected.
But a new documentary suggests that the rising number of autism diagnoses does not actually represent an increase in the number of kids who have the developmental disorder. Rather, the filmmakers say that autism is becoming an umbrella term latched onto by parents and diagnosticians alike in their efforts to get services for children whose needs are not easily defined.
“Autistic-Like: Graham’s Story” follows the experiences of filmmaker Erik Linthorst as he and his wife, Jennie, struggle to find a proper diagnosis and treatment for their son Graham, now 5. (Click here to view the trailer >>)
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Though Graham is diagnosed with autism, even diagnosticians admit that many of the boy’s behaviors are merely autistic-like. Meanwhile, some of Graham’s characteristics – like his ability to establish eye contact – aren’t consistent with autism at all.
Ultimately, Graham is more appropriately diagnosed with a sensory processing disorder, but the Linthorsts are encouraged to keep the autism diagnosis so that Graham is assured government-funded early intervention and special education services.
Linthorst spoke with Disability Scoop about what it means for a child to be autistic-like and why it matters if kids like Graham are diagnosed with autism.
Disability Scoop: What does autistic-like mean?
Erik Linthorst: That phrase summed up the experience that we had with Graham from the get-go. When we went to our pediatrician she said he looks like he has autistic-like behaviors, but I don’t think he has autism. He looked like he had sensory processing disorder, but she said that diagnosis won’t get you the help he needs and an autism diagnosis will.
We left thinking, so does he have autism or does he not? All we know is that he has autistic-like behaviors and that’s the best way to describe Graham.
Disability Scoop: In Graham’s case, what about him is autistic-like and what about him is definitely not?
Erik Linthorst: The part that’s definitely not is that he’s got this gleam in his eye. He makes good eye contact and he’s social. At the same time, he developed these repetitive behaviors that were very autistic-like. He loved to spin wheels and just stare at them. He became obsessed with patterns and lines along the floor. Those were very autistic-like behaviors and because he was spending so much time engaged in these behaviors, he began to fall off the developmental ladder and he started to miss his milestones.
Disability Scoop: In the film you suggest that the diagnostic rate of 1 in 150 children (now likely lower) might be too high. Why?
Erik Linthorst: If you met Graham today or even back when he was in intensive therapy, anyone who was savvy about children’s development would look at him and say this kid clearly doesn’t have autism. Yet he had an autism diagnosis. He was one of those 1 in 150, but he didn’t have autism.
I talked to a lot of other parents and I was alarmed to find that many parents had a very similar story. The doctor was saying your child doesn’t have autism, but if you want help, here’s what you have to do. You need to take this diagnosis. The result is that a lot of kids that otherwise wouldn’t qualify for an autism diagnosis — or maybe legitimately shouldn’t qualify for an autism diagnosis — are qualifying because it’s the only thing that will get them services.
The average person sees that the CDC is lowering the stat to 1 in 100 and thinks that these numbers are because of increased incidence of a disease and that may not be the case.