Ou-tsm.

This is a letter I just wrote to a friend, in response to her questions about two of my kids being diagnosed with autism recently. Yah, it is lazy to post a letter I've already written instead of writing something knew. What of it, eh?

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There are a variety of ways this information could be looked at.

One, in which we all run around holding back tears, wringing our hands and wondering "What will become of them?"

Two, we could attempt to force "normalcy" on the boys, teaching them to kowtow to the Great Norm.

(We could even combine one and two.)

Another way, we could just ignore it completely. That's a little difficult, since the boys know and might wonder what happened to their autism. Is it in the closet?

A way I like, the way things are, is to tell the boys that this is just a label that describes certain ways they behave. That there is nothing wrong with them, but that they are somewhat different from the norm. This ways works because we have always strived to be different from the norm, so we are basically saying, "You are like your family. Bless your lucky stars!"

I think what we have found here is that being part of our family makes us relate to the greater world in a way that gets one categorized as autistic, because there is no checkbox for "completely amazing, possibly part alien" which is what we kind of are.

We didn't go looking for this information. I took both of them in to be tested for ADD, and during each of the intake interviews (with me, going over their developmental history), the evaluator said, "Hmmm. I'm going to do a little extra testing, because that sounds like autism."

It didn't surprise me at all. Jack and I have thought that James has autism ever since he was a baby (literally the moment he was born, I could sense something different about him). Because he was finding his own way to maneuver through the world, we weren't worried about it, and didn't see any reason to stick him with a label. We raised him as if he were James, because, well, he is.

In the same way, Sam's troubles getting by made us think that he might be labeled with autism as well, but mostly it didn't seem like something needed to be done. With Sam, his histrionics really took a toll on him and us, so eventually he did go to a therapist & psychiatrist. He was briefly on mild anxiety meds (Atarax) which did nothing, but he has mellowed a lot now that we are being more deliberate in our interactions with him. His first therapist insisted he was not autistic because he has such a strong bond with me, which just goes to show that she doesn't know much about autism. People with autism can form extremely strong bonds, especially with the "safe" people in their lives. (I've been doing a lot of reading.)

Anyway, when I say "autism," I don't mean "defective, retarded, incapable of emotion or relationships." I mean different from the average person, with different ways of interacting with the world and other people. I know that profound autism is debilitating and keeps people from really being part of the world. But people with high functioning autism/Asperger's, are just people that take in the world differently than it is is commonly done, and may have some foibles that cause them some slight difficulties (or severe, if the people they interact with don't understand them). And in many respects, their ability to see the world differently, coupled with an often higher IQ, leads them to amazing things-- inventions, writing, music, art...

(By the way, maybe you know this, but Asperger's is no longer in the DSM. That category has been rolled into Autism Spectrum Disorder in the DSM 5. If this hadn't just happened in the new edition, Sam & James would be labeled with Asperger's rather than straight autism.)

What it means to know this... Um, James  has been acting more oddly than his usual lately. Letting his little eccentricities come out, being silly or weird, doing things that he's always done, but moreso. These little things, many are classic autistic traits-- vocalizing, hand flapping, echolalia. It's kind of great to see, like now he knows why he might have felt "different" and he can be as different as he wants. He has less restraint. I think he is just mapping out what this new land is like. When I told him about the diagnosis, the first thing he said was, "Great, I have autism!" in an excited tone, then thought about it for a minute and said, "You know, I'm proud of myself for doing as well as I have, considering I have autism." Which is pretty much the awesome kind of thing I would expect James  to say. (Oh yah, he & I both just read a book entitled "Look Me In The Eye" about living with Asperger's, by John Elder Robison, the brother of Augusten Burroughs. You should read it, it's great!)

Sam was just like, "Ho hum. Can I make my bow and arrows now?" I explained what autism is to him and he just kind of doesn't care. For a kid that has lived so much of his life with anxiety and emotional meltdowns, he is very secure in how he sees himself.

As for defying the categorization-- in a lot of ways, I feel the same. Like they come from this weird, amazing family that doesn't constrain who they are, so of course they aren't going to appear as ordinary kids. But when I break it down, and apply that to the diagnostic criteria, it does make sense to put them in that grouping, in terms of how they deal with the people around them. We could have easily just bypassed the diagnosis and raised them the same way (letting them be themselves), but it is somewhat helpful to have the Dx. To know that some of their annoying behavior may be outside of their control makes it easier to just kind of breathe and let it go. Just in these few weeks, I am locking horns with them much less. I've been able to moderate some of the interkid conflicts by reminding them that there might be a reason that certain things are happening, and to not take things so personally. Not that the boys get to use autism as an excuse, but there is quite a lot to them that is inflexible and we need to work around.

I've been feeling protective of them, too. Like I want to protect them from the awful world that sees autism as a terrible disease and will reject them for it. But I've been feeling extra protective towards these two all their lives, because they don't just click into the world around them easily.

They are pretty relational, and part of that is just because of immersing them in situations in which they had to relate. All of the chaos of the Chutney houses was difficult, but there were so many people always milling around, they kind of had to sink or swim. Even before that, I took them everywhere I went, so they were always in new situations with new people. Add to that the great warmth we all express towards one another-- constant hugs and kisses and I love yous-- and it isn't surprising that they are able to get along pretty well. However, each of them do have some issues getting along with peers. James didn't have any friends at all until 7th or 8th grade, and he had been mocked and bullied before that (kind of a classic scenario for a kid with Asperger's). He continues to not really have much contact with friends. Sam gets along OK with other kids, but he does get into some problems at school with being rigid or overly physical (eg. just too rough, or won't stop tapping someone's shoulder). He also doesn't have much contact with kids other than at school. He sometimes has trouble with his teacher, not getting that she actually does have authority over him (he knows he is smarter than she).

Back to the constant hugging-- do you remember how stiff James would be when he got hugged? It was like hugging a board. A number of years ago, I began a concerted campaign to hug him out of that rigidity, and it has mostly worked. I just hugged him all the time, every time he walked past, I hugged him. I don't think he didn't want to be hugged, I think he just didn't know how to deal with it. Once he got used to it, he relaxed a lot, and now we hug each other all the time. He also bites me, which is another thing illustrating his lack of knowledge about how to relate-- he wants to be close to me, but isn't sure how, so he bites my shoulder. I take it as a sign of affection.

So anyway, after this tome, I still feel like I haven't quite expressed myself. Maybe I can do it in one sentence: I don't think autism is something to fear, I don't think the boys really needed labels, though the labels might come in handy in understanding them.