The Problem with "The Spectrum"

Well, I'm reasonably certain that there's more than one.

But I am just going to focus on one right now.

This is something that I have had an issue with for some time though I haven't written about it before. The Spectrum. No, not that Spectrum (yo, Philly, wassup?!)

 

This spectrum  Where anyone and everyone with Autism, high-functioning Autism, and Asperger's are all thrown in some sort of effort to differentiate them further - while still keeping them the same. Guess what? They ARE different. Very. Different. And because this isn't a very widely read blog I can pretty much say what I want and no one really notices, I am going to just go ahead and voice my opinion that Asperger's and Autism are not just different degrees of the same thing. I don't believe that they are the same. There may be some things that are similar between them but just because you see some similarities and throw them all on one big line and say hey, this is all you, doesn't make it so.

Let me tell you what I mean.

 

So I was watching American Idol this week. There is a young man whom they have featured, who is doing well, impressed the judges, and oh yeah - he has Tourette's and Asperger's, which they go further to explain is high-functioning autism. He's wonderful. His story is great, it made me tear up. Ok, I do that a lot, but still! And I can see the Tourette's. What I can't see is the Asperger's. Like, at all. This young man has a fiance, he's a new father, expresses himself well, though somewhat emotional but otherwise? Lovely. And REALLY hard to see the things that I am familiar with as earmarks of autism.

I am not suggesting that they have exaggerated his diagnosis for tv, he is the one who explained what his issues were. I am also not suggesting that he hasn't had a difficult road. On the contrary, I love him and hope he keeps going, I think it's wonderful for him and his family.

My problem is this: this is what everyone else now sees as "autism". These are the stories that get all of the media attention. Remember the boy who was the manager of his high school basketball team a few years ago and ended up all over the news when they let him play toward the end of a game and he scored this insane 3-pointer? He had high-functioning Autism. The story was EVERYWHERE. I can't tell you how many people I know linked me the video of him shooting that basket and said "look! look what he can do! Josh could do that some day!" and they were well-meaning and sweet I would never be upset with anyone for trying to be so encouraging.

But Josh will never shoot a 3-pointer from center court. He is incapable of understanding something like basketball and he could never be a team manager. He won't be auditioning for American Idol and he certainly won't have a wife and family some day. He just won't. He is not cognitively, physically, socially, verbally, developmentally, or in any other way able to do things like that. He is not even potty trained, for heaven's sake. He wears over-sized Uggs for all occasions, eats with his hands, and cannot tell you how he's feeling, or what he had for breakfast. He scares the drive-through people when he gets loud. People stare at him - not in amazement at the wonderful things he can do, but because he is loud and startling and strange.

This is Autism. I do understand that it manifests differently in everyone who has it and that certainly there are differences in severity.

But please don't equate  with Josh. Because I know from experience that people will. Well meaning, optimistic, wonderful people. But you simply cannot put them in the same category. Or even the same "spectrum". You. Can't.

To me it's like saying, well, I have a headache, and someone having a stroke has a headache, and sure theirs is WAY worse, and will lead to all sorts of major problems, but we both have headaches so we're on the same spectrum.

Nope.

Asperger's is Asperger's. Let it be its own entity. And I think there is a very fuzzy line between "High-Functioning Autism" and Asperger's. If you're autistic, and you can function that well, maybe you're not autistic, maybe you have Asperger's.

Of course I understand that there are going to be varying degrees of severity or affectedness, I'm not carrying it to the extreme of saying everyone with the diagnosis should be exactly the same. I'm just saying that by calling everything out there some form of Autism and then using the concept of a spectrum to explain the differences, we are doing a great disservice to the public as well as our children. I just feel like it leads to too much misunderstanding and incorrect generalizations.

Not all of our stories are fairy-tales. They're not all feel-good, viral-video worthy. But this is the picture of Autism that is presented to the world and I just don't think it's right because I'm not convinced that it is really Autism that is being represented in these cases.

I am not trying to take anything away from the people out there like the two I mentioned who have done and are doing amazing things despite a lot of difficulties, that's not what I'm saying. My point is more about the diagnostic side of this and what I feel is in inappropriate lumping together of people who should in fact, be considered separately.

 

We should have our own umbrellas.