Autism: What would we have thought back then?

I've discussed with several people recently how lucky we are to be living now and not 30 or more years ago. More specifically, how lucky our children are to be living in a time when people work to recognize their potential and not to define them by their limitations. I remember my own experiences as a child who confusticated and bebothered my elders with my bewildering and contradictory behaviors, and I also remember other children who did the same, kids who today probably would be diagnosed with ADD or ADHD or some other label.

Labels bother people. Some people don't like the label "feminist." Some don't like to label children. Some like labels a lot--it's a vocal movement among autistic teens and adults who strongly believe that autism is who they are, not just a part of their makeup, a movement that reminds me of the debate among the deaf about whether or not to use cochlear implants as a "fix" or to stick with deaf person culture. For many hearing-impaired people, deafness is a difference, not a disability, and for the autistic adults, autism is also just a difference, not something to be viewed as a defect requiring a "cure."

I happen to like labels in the autistic sense because they're getting my sons the services they need. I also happen to think that the labels are accurate in our case. I sometimes consider what label would have been slapped on TH in the 1960s or 1970s, and I know that it would not have been nearly as accurate or useful for him as the one he has now.

He tests into MR (as they used to call it) territory on some things. He can't spell or remember how to spell from one week to the other. He still writes some letters and most numbers backwards. He never knows what day it is or what time it is or who has come or gone from the room. He appears to have no common sense. He struggles with specific academics at school (although not at home), and he struggles with the simple act of being a student. He has horrific social anxiety and a terrible sense of personal space. His movements are jerky and idiosyncratic, and he makes weird noises pretty much all the time. Take this suite of things and transplant him to 1975, and you'd be seeing my son plunked down in a special ed classroom, riding the short bus, possibly administered God-knows-what pharmaceuticals, and set on a path of stigma and pigeonholing that would have been difficult to divert.

And we would have been banging our heads against a wall ourselves, trying to figure out why our son, who seems so bright, so intelligent, so quick in some ways could be struggling so much, be so inept in interacting with peers, so unaware of necessary information about his existence. I can even imagine an ongoing battle with the teachers and school administration: "No, he is smart. He's quite bright. We can't figure out why this isn't coming out more clearly at school." Our angst would have been as extreme as our lack of understanding. Our methods for addressing it likely would have been considerably different. It frightens me to think how different they might have been without the understanding that comes with the right label.

Looking around at some other children I know who have various labels, including some that are genuinely genetically identified, I wonder what their lives would have been like. Right now, they're all mainstreamed. They do sports. They play with peers. Would that have been the case 30 or 40 years ago? What would have been their fates? Even the simple fact that awareness about and intolerance of bullying is in vogue today makes an enormous difference.

It makes me shudder a bit to think how different life would be for these children and for mine. Yes, they have labels, and they would have had labels then, too. The important thing is that the labels they have today are the right ones, accurate indicators of their needs but not automatic limits on their abilities. Sure, the labels may change again, although I think it would be more of a focus on refinement and categories within the developmental disorders umbrella rather than a wholesale revision. For now, however, the labels we have work for us, and I don't need 20-20 hindsight to see that in action.