Growing Up, Bigger, but Violent?

At the new neurologist's, we discovered that Charlie has grown almost 5 inches since September. In looking over photos from last summer, he still looks like a little boy---ok, certainly a boy---holding Jim's hand as they walked together on the beach. He's clearly been having quite a growth spurt and everyone (the neurologist included) has nodded, yes, this could have something to do with his struggles in the past few months. Generally Charlie is peaceful and attentive and trying very hard to learn and talk and loving walks in the city and subway rides and diner dinners and, of course, riding bikes. And then, seemingly suddenly, he goes from standing silently to crying out, banging, flailing, and we're right there, trying to hold on and keep him and everyone safe.

When I've written about these things happening, people have been generous in offering suggestions for what to do. Rest assured that we've been working hard, especially with Charlie's teacher and her staff of aides and therapists, to address things with Charlie and to keep teaching him. Though there have been some very, very hard moments, Charlie has continued to learn---addition with decimals!---and to change. Certainly one thing he's had to adjust to is the rapid and continuous changes to his body. Often it seems he's simply baffled to find himself in a body so unexpectedly big and tall (the other day he realized he had only to reach up his arms to open the cabinets above the stove), and powerful. Charlie, I would warrant, is yet learning the extent of his strength.

Jim and I are quite aware of this and it's why we've been taking measures like seeing the new neurologist and taking a serious look at Charlie's medications. Thanks to Charlie's teacher, we have been able to get a few home program hours from the school district: ABA has long been an effective teaching method for Charlie and we're back to drawing more on it to create structure and teach him to use a schedule at home. Sometimes it feels like we're back to the time around Charlie's diagnosis almost ten years ago in 1999, making the hard choices with a view to making things better for Charlie in the future, hopefully.

Yet I do realize, hey it could all go down in a few seconds.

One outburst where things swing too hard and heftily and unnameable unnameables could occur. We've tried and we try to do "everything"; we love Charlie as he is, for who he is, because he's who he is, and Jim and I both seek to make this our message.

Trudy Steuernagel publicly advocated about the good of her life with her son, Sky Walker, amid many, many struggles---Steuernagel died in January and her son is charged with killing her (he has pleaded "not guilty" through his lawyers). In yesterday's Salon, writer Ann Bauer describes how she too once wrote about autism as

"......beautiful, mysterious, perhaps even evolutionarily necessary. Denying that it can also be a wild, ravaging madness, a disease of the mind and soul. It was my trademark as an essayist, but also my profound belief."

And here she is writing about "the monster inside my son" who, now 21, has become violent, destructive, beating family members including Bauer herself and the residents of the group home where he was living. In January, while Bauer and her husband were at an inauguration party, Andrew spent ten hours "in an ambulance circling the Twin Cities, sedated and strapped down to a bed," after assaulting a woman in his group home. He finally ended up in a hospital and, when Bauer visits him, he said "'I might try to kill you.'" Andrew was treated with "buckets full of dangerous, doping drugs and two sessions of ECT."

Bauer has written previously about the changes in Andrew as he grew up, including catatonia following his being given a number of medications. I don't think I'm alone among parents of younger children to read her writings with a sense of necessity---to find out what awaits---mixed with fear. Will what happened to Andrew happen to my child, for all of our efforts? I want to say that it won't. And then I feel very human and think, you just never know.

Whether there's a connection between autism and violence: Bauer ends her essay considering this in light of the death of Trudy Steuernagel by Sky Walker. The case of Henry Cozad, who is charged with the killing of a 59-year-old woman who lived with his father, lingers in the background. Writes Bauer:

And even if [a link between autism and violence] exists, the cause is not clear. Our adult son's behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense. It could be the result (as some scientists have postulated) of excess testosterone on the autistic brain. It could simply be wild coincidence that I ran across this particular story during a time when I was looking for answers. Any of these is possible. I just don't know.

The chairman of Trudy Steuernagel's department rose at her memorial service to proclaim, "Autism doesn't equal violence." And this probably is mathematically correct: Autism does not always equal violence. But I do believe there may be a tragic, blameless relationship. Neither Sky nor Andrew means to be murderous -- of this I am sure -- but their circumstances, neurology, size and age combine to create the perfect storm.

I think we have to be very careful at formulating too close a "link" between violence and autism. We need to be wary of even suggesting that there's a direct connection of the two, while not hesitating from talking about violence, aggression, and the like. And when we do talk and write about violence and autism, I'd propose that we be careful constantly to question why are we describing something violent----to what ends is violence being talked about? Yes, what Bauer writes about happening to her son is awful. Even though there are many more accounts of autism, of being on the autism spectrum and of families raising an autistic child that are much more tinged with hope than in previous years, it's possible that Bauer's account of violence and of every day life wrent by an autistic relative more closely parallels the "typical," "expected" account of life with autism.

I know that I've often wondered, what was someone---the universe---thinking, that Charlie, with all of his needs and challenges, had to enter puberty early, fast, and thoroughly? I keep thinking, we all needed just a little more time, to get ready----and then I'm reminded, well no. The time is now; as tough as it is to help Charlie at times, better to do it now while he's young and not yet the 6 feet tall he seems likely to grow into. Better now, because who knows what, yes, dark and light and dark with hidden light---dark shot through with warmth and light---the future holds?

For more commentary on Bauer's essay, see Worth Considering by Emily Willingham.