Disability Scoop: Autism is a spectrum. Is it such a bad thing for somebody like Graham to be a part of this spectrum?
Erik Linthorst: The conventional wisdom 10 or 15 years ago was that it didn’t matter. The idea was that these kids are all in serious need of help, so let’s not worry about the nuances of what each particular kid’s diagnosis is. Let’s just give it one name, raise a big flag, raise funds and let’s research. Let’s get them help. I think it made sense at the time.
But here’s the downside of lumping all of these kids on the autism spectrum. One, the treatment isn’t necessarily going to be right. Two, you’re spending all this money on researching autism and you’re studying kids who all have an autism diagnosis. But when they get the results they start realizing that they’re comparing apples to oranges. These kids all have an autism diagnosis, but they really have different disorders. So what does that do to the research? In many ways it invalidates the results. So both on the research side and on the treatment side, I think there’s a real fallout.
The other thing I would say is that there’s a backlog of people needing help. Wouldn’t it be better for all the kids with classic autism not to have to wait in line behind all the kids who maybe don’t have autism and for whom maybe the treatment isn’t appropriate?
Disability Scoop: Does Graham still have an autism diagnosis?
Erik Linthorst: Technically he does. Our developmental pediatrician who originally gave us the diagnosis said there’s no reason to take it away. Graham just started kindergarten. Fortunately for us our school district is great and they came to the table with a full complement of services for Graham. But for most families, that would not be the case and to have an autism diagnosis in your back pocket to lay on the table is a great thing to have when you’re trying to get services.
Disability Scoop: What do you say to parents who know autism isn’t an appropriate diagnosis, but who can’t afford to privately pay for the therapy they think is most appropriate?
Erik Linthorst: That was us. We took an autism diagnosis because our doctor said that’s what we needed and we went with state-funded services because it was paid for. We were very fortunate because when I finally realized that the therapy provided by the state wasn’t right for Graham, we were able to pay out of pocket.
But for parents who can’t afford it, there aren’t a lot of answers and that’s not okay. I made the movie to try to illuminate this issue so that we can see systemic change.
In the meantime, there are things you can do. For example, we were able to get part of our floortime program (a type of therapy) funded through the state of California by setting up the program and paying for it for a little while and then inviting the state to our house and showing them our program. We showed them how we track data, how we set goals. They came back to us and said we’ll fund a portion of your program but you have to call it a behavioral intervention. You can’t call it floortime. So we were actually able to get them to fund a portion of our program.
Disability Scoop: What’s the message from your experience?
Erik Linthorst: It’s a parent empowerment message really. You know best for your child. If something’s not sitting right with you – whether it’s the diagnosis or the treatment that he’s been prescribed – then it’s not right. Sometimes you need to push through the usual answers and sometimes you need to advocate.
Another message that I hope comes through is that it’s hard and it’s draining and there’s a tremendous amount of time and energy. I’m not trying to paint a rosy picture. It’s tough work but we can make this easier on families if we make some changes to the way the system is currently run.
“Autistic-Like: Graham’s Story” will screen in 80 cities around the world in October.
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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.