Painting the Roses Blue
I'm feeling a little blue. And sadly, it has nothing to do with being in the spirit of “Light it Up Blue.” Last week's report from the CDC has me filled with dread. Whenever news such as this comes out, the tendency is to try and find a bright side to the situation. Such is the case with the Wall Street Journal’s article entitled "The Upside of Autism." The author, Jonah Lehrer, reports on a study conducted at the University College London in which adult participants with autism outperform nonautistic participants when it comes to tracking letters on a computer screen. Lehrer also points to the existence of savant skills in some autistic people and Temple Grandin’s success as examples of the good to be found in autism. I wholly understand the need for a feel good moment in this sea of autism news. It’s a feeling very similar to that lift you get upon reviewing psychoeducational diagnostic testing results and discovering a sub-test with better scoring than expected. However, in my current Eeyore state of mind, I have a hard time finding any real world value in the examples presented in the article. I would have felt much better if Lehrer not only hypothesized about the marketability of these skills, but provided widespread examples of positive employment outcome based on them.
With the definition, frequency, and incidences of the diagnosis of autism subject to change, one thing hasn't changed: The autism population needs supports beyond typical school-aged years, and this applies spectrum-wide. Surprisingly, those on the high end of the spectrum have been shown to struggle more as adults than those on the other end of the spectrum. The Simons Foundation Autism Research Initiative (SFARI) website published an article by Deborah Rudacille which highlights studies of autistic adults. One study suggests that “even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.” Lack of adult services for this “high-functioning” group and social isolation are major contributors to the challenges they face. This population will not reach their fullest potential without help and that help doesn't stop at age 18.
My son has only had a diagnosis with the word "autism" in it for a few years. The next round of diagnostic testing may well come back without that word in it. But a rose by any other name is still a rose. It's not as if a change in diagnosis affords me the opportunity to wipe my hands and declare my work to be done. As parents, we have to learn on the job, and evolve our skill set as our children evolve. This is true for all parents, but never more so than for the parent of a child with autism. Just as we ask the world to be aware of us and our children today, we ourselves must stay aware. Aware that future is unknown, but we should prepare for the worst and expect the best.