Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens next?
I think one of the better pieces I read lately about the topic. It acknowledges the difficulties faced, without getting on the pity pot, and it does show the broad spectrum of lifestyles these children have. Some are just kind of quirky. Others are in their late teens and still don’t speak.
I think this country is due a wake-up call, though. By not furthering therapies that help lead to independent lives, or working on ways to be semi-independent, we are going to have a number of homeless people wandering the streets, or a resurgence of institutions to deal with many children when they get older. Did you know that social security/disability DISCOURAGES saving for a child’s future if they are disabled? More than two thousand dollars saved up, and you lose precious money that you can use on therapies and items to try to avoid that. It’s a choice of money now, or money later. Not much of a choice, is it?
I think, too, we need to be careful with the direction we go with research and ‘cures’. Some treatments out there work on the symptoms without acknowledging the underlying issues. You can drug a child or use ‘adversives’ (like the school that NYS sends kids to, which use skin shocks) to make them stop behavior you find unacceptable (even things like pacing or hand flapping, not dangerous things). Or you can look at the root causes (need for sensory input) and find out how to get that input into a person without it distracting from what needs to be done, so they can work, learn, have fun. With my son, for example, they make this neat vest that ‘hugs’ him tightly. Some kids just need a little toy to flip around in their hands, or something to vibrate, or to take time out in their day to go on a swing or rock or something like that. A more positive therapy, I think.
Time will tell how independent T will be. But he is happy now, and making some progress. I thought, when we were pretty sure that he was on the spectrum, that being told I would be devastated, destroyed. But coming home from the clinic he was the same kid he was when we went there in the morning. But now we had a reason for things, and instead of him coming into our world, they gave me the keys to HIS world, and now we can be there with him, and now that we can go into his, he can take our hands and come into ours. And that’s ok with me.