diagnosis


 

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.

via The Kids Who Don’t Beat Autism – NYTimes.com.

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 He was not withdrawn into his own little world so much, as he was hyperactive, aggressive, destructive, obsessive, and socially inept in our world.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.

Wow. Just wow.

Brain Study Suggests Autism Starts Before Birth – NBC News.com.

 

A Baby\’s Gaze May Signal Autism, Study Finds – NYTimes.com.

This is something I noticed early in Rob: he did not gaze into my eyes while nursing like his sister had. And I remember realizing it when, one time while nursing,  he sat up,  looked at me intently in the eyes, put his hand on my cheek; than laid back down and began nursing again. I was shocked, thinking “What was THAT!” because it seemed so strange. That’s when I realized part of what made it strange is that he engaged in very little eye contact otherwise.

Grandpa’s Age Linked To Autism – Forbes.

Grandfathers older than 50 linked to autism risk. My maternal grandfather had 12+ children; my mother was #12. So he must have been older, close to 50 anyway, although I don’t know his exact age when my mother was born. Moreover, I know nothing about my paternal side of the family.  My twin brother is most likely an Aspie.

I don’t know that this explains Rob’s case though, since neither of his grandfathers were old: my father was 32, and my husband’s father in his 20’s, when we each were born.

Placentas may indicate risk of autism

This is an exciting study that may indicate that the placenta can show signs that predict higher autism risk in newborns!  If this research pans out, it will be a complete game changer for autism!  

Here are some links I found that explain a little bit about how the placenta can shows signs that help with diagnosis: