Autism: Is it in your hand or in your head?

By Linda Andron Ostrow

For this month’s wisdom, we turn to nine-year-old Gwen. In our social skills group, in individual therapy, and in her in-home behavioral program, Gwen works very hard for self-understanding, including the role that autism plays in her life. Equally as dedicated, her mother works very hard along with therapists, to build this very critical skill of the Upstairs Brain (a term from The Whole Brain Child, Dr. Dan Siegel). 

The proof is in the pudding as they say. Gwen is expressing more and more her self-understanding, and her mother is there to guide her. When Gwen heard the story about the boy with autism that was lost, she was able to reflect her own self-understanding and relate it to this experience. This is the level of integration that we are always looking for, and that allows children to develop the executive function that will help them move out and be successful in the world. In the words of Gwen’s mother…

“Gwenyth overheard me talking about how the young man with autism (Romario Snow de la Torre) who went missing for the past two weeks was finally found hanging out with a group of homeless people. She wanted to know why he couldn’t talk and tell people he was lost. I explained that he had autism. She thought that he must have had “a lot of autism” if he couldn’t speak. I reminded her that she was almost 4 years old before she could speak. She thought about that and wanted to know why de la Torre’s parents hadn’t taught him sign language instead. I told her that I didn’t know what his parents had done. She thought about it some more and announced that a little bit of autism and a medium amount was okay, but that a lot was “a problem.” Then she wanted to know, “Are scientists working to cure autism?” and “Where is autism: Is it in your hand? Or in your head?”

I explained that it is in your brain. Just like you can use different Legos to make the same shape, autism uses different connections to make a brain. But because of the different connections, some things are easier for people with autism, while some things are harder. I pointed out that Gwenyth is very good at things like “Where’s Waldo?” and at noticing small details, but that some things are harder for her. She interrupted to say, “Like tasting new things. It’s harder for me than for other people. I’ve mastered my other senses, like seeing and hearing and touching, but tasting is still hard for me.”

It was interesting to hear her reflect upon herself. She seemed okay with the fact that she has autism, but she also recognized that it could be a problem if you can’t communicate.”

Kudos to Gwen and her mother, her therapeutic team here at FACT, her teachers and family, for all that they represent. This is the kind of experiences that motivate us all – individuals with autism, their families, the therapuetic teams, and the community at large.