Susan's Blog

Friday, August 3, 2012

My view on what autism is — and is not

I kept away from the whole uproar over the new DSM-V version of the autism spectrum. So I really don’t know where the Autism Powers That Be stand on the matter. That’s how I am; I don’t really read autism blogs or autism books (WHAT??? SHE SAID WHAT???), so I don’t know these things. I just read fiction, news (The Boston Globe and The New York Times), listen to NPR, and talk to my closest circle about things that matter to me, autism being high on the list. Nat, to be more specific, is at the top.

But autism itself interests me. And the definition of autism does, too. I have known for a long time that everyone who is autistic is autistic in a different way, just as all people are different. And yet, paradoxically, there are similarities, or it wouldn’t have a unifying term: autism. But to me, what autism is largely reflective of how Nat acts; in other words, my experiences with Nat inform my definition of autism. Of course I know many others deeply inside the Spectrum, and also floating in various other parts of the Realm.

Nat is considered a Priority One in Massachusetts, which means he qualifies for many services as an adult. This also means that he is considered Low Functioning, Severe, MR, ID, DD, and other mean-and-nasties. I have rebelled many times against these terms. “Retarded,” for example, is so reviled that we had to crush the word, banish it from our midst. Likewise there is the great Person First debate. For the most part, I say “autistic people,” rather than “people with autism,” because the latter sounds contrived. I would also use the term MR (Mentally Retarded) to describe Nat if it were “okay” because frankly I don’t feel there is anything wrong with how he is. Well, let me rephrase that. The fact that he has MR and autism definitely limit his existence. He is limited by his disabilities, even though I think he is talented, lovely, bright, hard-working, easy to get along with, and many other beautiful qualities.

But I’m not supposed to say that. I’m not supposed to think that. But what if I do feel that he is limited? What if I believe that? Of course he is limited; in this world you need to be able to do X, Y, and Z in order to survive. Survival is our paramount driving force as living creatures. So it stands to reason that those who need more help surviving have a harder time, and can do less.

This is not bad, but it does make me sad as a mother. I’m sad for him, even while I’m happy for him and proud of him. And I no longer want to pretend that I’m not. I have accepted Nat’s disabilities, and I have done everything I can for him, and always will, but I am sad that he cannot have the opportunities his brothers have. And please don’t tell me that all we have to do is keep on making him communicate on the iPad. That does not equal having the kind of life his brothers have. His progress with the iPad makes me wild with delight. But I am still under no illusions that he is going to be able to function normally, ever.

If you can be on your own, you are higher functioning. If you can talk and understand and respond and keep on a conversation, you are higher functioning than Nat. If you can travel on a plane or train on your own, you are very high functioning. And you are not in the same ballpark as Nat. He does many things well, but he does not understand how to be safe. If you know how to be safe, you are high functioning.

Now, if you suffer and stuggle to be high-functioning, that does not take away from the fact that you are still high-functioning. It merely makes you human! We all suffer! We all have our private Hells. There is no way to compare. I am merely looking at ability in the real world.

I guess what I’m saying is, the DSM should have kept Aspergers out of the Autism Spectrum, because Aspies are so high-functioning. I brought Nat to an ASAN meeting and he stimmed the whole time. He was probably listening to everyone, but was he processing and keeping up? I really don’t know. He cannot answer in a way that keeps up the conversation at the level in the room.I venture to say that he was even a little disruptive. No one cared, of course, because they are all kind and good people who really wanted to meet Nat. I cared, though, because I was so sad about the difference. I wanted Nat to be a real, active part in that conversation at ASAN. I wanted Nat to state his viewpoint, to make his experience relevant. But all he could do was show people who he was and how he could not be a part of the discussion. I love him so much, and that means, as his parent, that I wanted that for him.

I will probably be raked over the coals now for saying all this. It’s just that I have been struggling with these thoughts and feelings for a long, long time and I wanted to express them because I need to be honest. I don’t mean to be hurtful, but frankly, I don’t see how it hurts Aspies to be called high-functioning! It means they can do more in the world. They need less help than Nat and the Priority Ones and Twos. Maybe there are components of similarity, but truly, to me, I hope people feel relieved to have Asperger’s, just as I am relieved that Nat has progressed as much as he has. But I do not feel that both are on the same Spectrum. I feel that the DSM-V is wrong to make the Spectrum bigger in this way. It is already too big. Isn’t it better to keep Asperger’s its own high-functioning thing, like ADHD or LD, rather than saying it is autism and then setting up this painful dichotomy?

I love Nat, I’ve made peace with autism, but I’m not going to say that I love Nat’s autism. It makes his life too hard. He will always need others to help him with pretty basic things and that is a dangerous situation for a person to be in. I love Nat, but I do not love the struggle he has to endure just to live in the world.