Stats Show Autism Rising, But Who’s Really Autistic?
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.
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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.