I attribute much of Rob’s improvement to the sensory integration therapy we did with him. He was highly tactilely defensive and did not seem to have a good sense of where his body ended. I am frustrated that sensory integration therapy was for many years dismissed by some in the autism community as another quack therapy, because they didn’t understand why it worked. Now they are documenting the neural processes that connect touch, social difficulty, and autism.
September 16, 2016
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August 1, 2014
But that’s the problem with this whole autism business; we want precisely what is not available to us — something definitive, like a cause, a cure. Enough, already, with the ambiguities, the gray zones.
Still, it was definitiveness that was worrying me when I began reading “The Kids Who Beat Autism,” Ruth Padawer’s cover story in the Aug. 3rd New York Times Magazine. Mainly, I didn’t want to discover all the things my wife, Cynthia, and I could have done and didn’t. That thought keeps me up enough nights as it is.
Joel Yanofsky’s reaction to the recent New York Times Magazine article on The Kids Who Beat Autism strikes a chord within me, the familiar angst among parents of autistic children: Could we have done better? Did we miss something that could have helped? What if we didn’t have the time/resources/energy to do ABA (something that did not become widespread until later)? Could our child have been among the approximately 10% who “recover” from autism??
Some people would say that Rob is among that 10%. He is certainly “indistinguishable” from the non-autistic population in casual interaction, but he has some social deficits that become more obvious in extended and/or repeated interactions, and that affect his ability to hold certain types of jobs. Could any of this have been helped if he had been diagnosed earlier, and if he had been given intensive ABA treatment? It is hard to say. We feel fortunate that he is highly functional. But I would not say that he has outgrown, recovered from or “beat” his autism. The ambiguity of the diagnosis makes it difficult to assess his recovery.
Rob was not diagnosed until about two months before his sixth birthday. He was not withdrawn into his own little world so much, as he was hyperactive, aggressive, destructive, obsessive, and socially inept in our world. He was verbal, could make eye contact (although he didn’t like to), and we were more concerned about his aggression and destruction than anything else. We concentrated on intensive sensory integration therapy, and the therapies through his school: speech therapy, physical therapy, social skills training, behavior therapy (although not as intensive as ABA).
Rob still has fine motor issues that are very particular (he is a graphic designer, and can draw using a mouse; but not a pencil or pen; his writing is still pretty illegible, even his printing). His gross motor skills are excellent, and he is very athletic. He is intelligent and highly verbal, but still finds social interaction to be stressful. He tends to go into social or psychological “defense mode” easily, still; but at least it is no longer accompanied by physical defense mode as well. He has had some success in community college. He has had some success in work, along with some failures.
If we had to do it over again we would certainly have tried ABA if he had been diagnosed young enough. I think by age six it may have been too late, however. For Rob, I still think the best thing was the sensory integration therapy, because until those issues were addressed it would have been difficult for him to focus on anything else. But I am not an expert, only a parent who tried to do her best in a highly ambiguous situation.