Autism has its own language. Just ask any parent whose child has received a diagnosis of PDD-NOS and now has an IEP mandating EI that includes OT. But the specialized language of how we talk about autism is actually easier to master than the language -- spoken or not -- that autistic people themselves use.
This point came home to my wife and me during a trip we took to the Bay Area last month with our autistic son, Sam. Erika's grandmother died two years ago at age 97, and her family made the trip to California to inter her ashes in the East Bay city where she had lived for many years.
Our initial plan was for Sam and me to stay behind at the hotel while the rest of the family went to the cemetery. We figured the service wouldn't mean much to him and that he might be disruptive. Ultimately, though, we decided that since only immediate family would be there, there was no harm in bringing Sam. We told him we were going to "say goodbye" and crossed our fingers.
And indeed, he sat quietly, seemingly not paying attention as each member of the family spoke briefly about Erika's grandmother. Then, much to our surprise, Sam said it was his turn. Concerned he might start talking about Dr. Seuss, the iPad, or one of his other current obsessions, we were prepared to cut him off if need be. Here is what he said:
Hello, everybody. I miss Grandma Ann. She was so nice. I miss her. My aunt misses her, too. But she's stuck on the airplane, so we have to say goodbye. Let's all wave goodbye to Grandma Ann. Goodbye, Grandma Ann!
We were somehow able to get our hands to wave even though Sam had blown our minds. Though Sam has made great strides in communication, he is still just as happy muttering variations on book or video scripts to himself as he is having a back and forth conversation. This speech, with its not-half-bad metaphor for death, is perhaps the longest and most contextually appropriate that Sam has ever given.
And yet, hours later, we had some questions. How much could a boy with limited communication skills miss someone whose own communication was limited by her declining mental faculties during the five years they knew each other? What did Sam really mean to say? Our guess is it may have been something more like this:
I didn't know Grandma Ann very well, but I love all of you and I'm getting a sense that this is an emotionally-heightened occasion. I want to be part of it, and luckily, my school's curriculum has been focused largely on getting me to participate in group settings. I can do that in ways that weren't possible for me before, and I want to contribute by saying some things that you will find appropriate. It's my way of showing you that I'm happy to be part of the family. Plus, I kind of get a kick out of performing.
We would have been just as proud of Sam had he made that speech as we were of the one he gave, and perhaps even more so because it would have reflected his true feelings. At least we think it would have. After all, we can't know Sam's internal mental state. Maybe he really does miss Grandma Ann and said exactly what he wanted to say.
And here is one of the major conundrums of autism: It's a "mental disorder," which implies some sort of internal problem, but the diagnosis and treatment of it is focused largely on external behaviors. We may believe a child's changed external behavior is an indication of a changed internal mental state, but we can't know for sure.
This is the issue with Sam. His speech therapy and social skills training are clearly paying off, and it's thrilling to see him speak appropriately and even movingly in social situations. That's huge progress.
But it's only half of the goal. The other half is for him to say what he actually feels. Is he doing that? How would we know? What is the difference between a child who can naturally do what Sam did and a child who has to be trained to do it? Is there a difference?
These issues are just as critical for autistic people who are far less verbal than Sam. We think of behaviors like rocking, spinning or flapping as "autistic behaviors," which is to say that we don't ascribe intention to them. We don't believe they mean anything, so we try to encourage more "appropriate" behaviors.
But those other behaviors are only more appropriate because we understand them better. There is a reason that an autistic person rocks, spins or flaps. There is even a reason that an autistic person engages in self-injurious behaviors (although those behaviors are more urgently in need of change than harmless ones). The problem is that we don't know the reason. So we work to change the external behavior and assume that by doing so, we've changed the internal state. But we can't know for sure.
When I interact with typical people, I assume they act the way they do for a reason; I assume there is intention behind their behavior. It's often easy to do, because their behaviors seem recognizable to me, and I assume that if I had the same intentions I would behave in the same way they are behaving.
Trying to make the same assumptions about people with autism is much more difficult because their behavior can be much harder to understand. But it seems to me that a fairly fundamental part of treating other people with dignity is assuming they act with reason and intent. And so we have to try to find the intention behind "autistic behaviors." We have to learn the language.
Hearing Sam's recent speech has convinced me that some day, many years from now, he will talk about me when I am gone. Naturally there are things I hope he'll say -- I wouldn't object, for example, to a final posthumous plug for Loving Lampposts: Living Autistic. Mostly, though, I hope he says just what he means.