Friday, January 18, 2008

Neurodiversity Training

My nephew Campbell was diagnosed as mildly to moderately autistic this week.

It didn't really come as a surprise to any of us, but it's still a little weird to hear so definite a term put on it. He's two years old and hasn't started talking yet. He tends to get frustrated and start screaming for inexplicable reasons. He's surprisingly passive, to the point that any time his twin brother Luke snatches a toy away from him, he simply shrugs it off and picks up another. He's always been partial to playing with blocks, and he spends hours just stacking them up, knocking them down, and then stacking them up again.

So the possibility of autism had definitely been discussed, but it's such a nebulous and odd condition that nobody seemed to know for certain. Last year, when my sister Sunny was grocery shopping with the twins, Campbell started screaming. He wasn't agitated or freaking out or anything. He was just screaming. When Sunny finally got him settled down, a woman approached her and started asking her all these questions about therapists and programs. She told my sister that her son had been diagnosed as autistic the year before, and started giving her all kinds of advice. No doubt the woman meant well and was just happy to find a kindred soul, but it freaked my sister out a little. She told the woman that Campbell was seeing a therapist, but they were still trying to determine just why he was so slow to develop. The woman told Sunny that she and her husband were in denial as well, and now she regretted taking so long to get her son diagnosed. My sister finally thanked the woman for her "kind words," paid for her groceries, went home, and bawled her eyes out.

So now it's official, or as official as anything regarding autism can be. There's a lot of culture that has sprung up around the condition, and a lot of controversy amongst people with autism and their families. There is actually an autism rights movement that encourages autistic people to "embrace their neurodiversity" and encourages the "neurotypicals" to accept autistics instead of trying to "cure" them. Some even view their autism as a gift, and resent being treated as if they are somehow disabled.

But while embracing the condition may work for those who are mildly affected, it isn't quite so easy for the moderately or the severely autistic. The nature of the condition makes it difficult for them to develop any kind of meaningful relationships with others. Some are able to "learn" the empathy necessary to interact, but others never develop that understanding.

So of course, there are some who feel the autism rights movement is doing more harm than good by extolling autism as a virtue and a gift rather than a condition. They want a cure, and they fear that efforts might be compromised if people view autism as a lifestyle rather than a disorder.

(And for the record, the whole idea of an autistic savant is one that has been exaggerated in popular culture. While many autistic people do show a real aptitude for logical, process-based disciplines, like mathematics and engineering, true savants are a rarity.)

I have no idea where I fall in this spectrum. I guess it will depend on how Campbell develops. Right now, one of the major milestones is to develop his language by the time he's six. If he can do that, he'll have a fighting chance.

I love my nephew, and all I want is for him to feel that and know what it means. He has two parents and an older brother (Christopher) who are devoted to him, and I have no doubt his twin brother Luke will be as well. No matter what happens.

There have been a few controversial studies that have linked autism with "geek" and "nerd" behavior. If that turns out to be true, then Campbell was certainly born into the right family...

3 comments:

scarletvirago said...

Wow. What a challenge for your family. You already have the most important tools, love and devotion, for dealing with these changes. I hope that whatever other tools you may need come swiftly and easily and that the "issues" of autism don't intrude on the special relationship with your nephew that you'll continue to develop.

Irb said...

Thanks Scarlet!

I already feel a special bond with the kid because, God help him, he looks EXACTLY like me. So no matter what hardships may lie ahead, at least he's going to grow up to be damned handsome.

Professor said...

My heart goes out to your family as you handle this challenge.