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 >>)
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.
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It is a lot easier to get services for a child or adult who has autism vs fetal alcohol syndrome or party daddy’s sperm is damaged syndrome or the many other known and unknown reasons for the disabilities.
Having a developmental delay will get you far more services and advocacy and benefits medicare for greater access than medicaid far more hope and help than having a severe physical or mental health disorder or both.
Of course any savvy parent who can afford legal and private medical assist will be advised to get a developmental delay diagnoses.
THIS IS WRONG.
This places more with equal or greater needs farther outside the service group.
This creates more services by group not medical need.
BUT THEY HAVE THE LOBBYISTS and LAWYERS and FUNDING STREAMS.
and that is how the world turns.
LIFE AINT FAIR and LIKE EVERYWHERE -
THE BEST LOBBIED GROUPS GET most and where there is not an infinite budget, LEAVE MANY OTHERS IN THE ROAD .
OFTEN, LITERALLY.
LIKE ME.
So after almost a decade IN THE ROAD, MULTIPLY DISABLED WITHOUT SUBSTANCE ABUSE,
My fear and anger about what this too is doing to me and many is strong.
I agree that the diagnosis of Autism or Autism Spectrum Disorder is being highly over used. My son, now age 17, has Classic Autism; lack of eye contact, no speach until age 7, loads of sensory issues, learning disability, perseveration on a subject, photographic memory, etc. When I see kids that are merely along the spectrum of “normal” being labled as having Autism, it makes my blood boil. We have had a hard enough time getting servies for my son, who is truely disabled. To know that parents and doctors are giving kids a label of Autism, who clearly do not have it, just to get some services that takes away from the kids who really need them is awful. No words can express my anger that this is happening. There is no epidemic of Autism, there is an epidemic of mis-diagnosis. Spend a day in my shoes and you will find out what Autism really is.
BLONDIE50 ___ Your comment is very telling of this issue. I almost feel as though everyone learned the ‘A’ word through advertisements. “…One in 150 have autism. … learn the signs!”
So when un-educated people see one purported ‘sign’ –> IT MUST BE AUTISM.
Yet, most damaging is, so many receive services that do not address their specific needs in our schools. It is the parent(s) who must be constantly advocating, finding and doing what works for their child each day.
An eleven year experience doing this has built character about the world I’d rather not have in some ways.
While I agree with the main points of the article, there is some misinformation in the comments too.
While “classical autism” (Kanners) is easier to diagnose when the autistic traits are very pronounced, the are others on the spectrum that have many of the same traits, but just not as easy to see.
I have a diagnosis of Aspergers received late in my life. My traits are not unlike the ones described in previous comments (“lack of eye contact, no speach until age 7, loads of sensory issues, learning disability, perseveration on a subject, photographic memory, etc.”).
Now it isn’t easy to see these traits unless you are looking for them. I, along with a lot of others, have a lot of coping mechanisms. While eye contact is extremely difficult (almost painful), I look at people’s mouths and they usually aren’t aware of it. It might have been easier for me because for whatever reason, I ended up extremely bright and was able to adapt quite a bit … and without ever receiving any special “services”.
Someone might look at me and suggest that I wasn’t autistic (or autistic enough I guess), but that would be wrong. Just because someone doesn’t “look” or “act” like you would expect, doesn’t invalidate a diagnosis.
My son has a language delay and went through testing to determine the best intervention for him. It is very difficult to trust the system because navigating it is very criptic. For example I knew my son did not fit what is generally accepted as autism, but he has sensory issues that made relatives worry that he was autistic. This angers me because people want labels to put kids in and are not motivated to find better answers and therapies that may be a better fit for children in grey areas. I also did not want the label because it can follow the child even when progress is made. When does a child in this systen become less on the spectrum or “cured”, and if the money goes with the diagnosis what incentive is there to rock the boat. I have to be my childs best advocate because frequently social workers will leave out resouces if it is considered too costly. There are also ethnic and class factors that effect who gets the best treatment and resources. I have seen it and experienced it. That is why you have to ask questions, read widely, and be no nonsence about getting what you need if you are a parent of color.
I cant wait to see this movie.
What a great article and thank you for sharing your story. Sensory disorders have for so long gone mistreated and under covered by insurance companies that it is unfortunate that doctors have to label these children autistic to get them the treatment they need. As devastating as autism is, it is likely that it is not as on the rise as we all think. Better diagnosing over the past 5 to 10 years has made the numbers more accurate, but over diagnosing like this story has made them inaccurate as well.
All children deserve the best treatment possible and most appropriate treatment. Hopefully bringing this story to light will make the insurance companies realize that sensory disorders exist with out an underlying diagnosis of autism.
Great article. Expanding the diagnosis/DSM IV for Autistic Disorder in 1994 while well intended has created some major issues.As the father of a non-verbal 12 year old son with major behavioral issues I appreciate the awareness it has created but the PDD-NOS diagnosis within the Autistic Sprectrum has become a “catch all” and 12mth old children who “may” have “some issue” are giving this diagnosis. A significant portion of these kids I have watched simply “grow” out of these so-called issues by the time they are 5/6 years old (a lot without any therapy/ABA at all)They never were Autistic just “delayed”. Autism is a life-long disability which currently does not have a cure. Our family struggles to provide our son with the services he needs today and he will need for the remainder of his life.This expanded Diagnosis – while well intended- will simply sap the system dry of much needed services for children with life-long diabilities.