I read some books about nonverbal autism lately. Naoki Higashida’s The Reason I Jump and Ido Kedar’s Ido in Autismland. I cannot recommend the former too highly for people interested in getting a look into the head of a nonverbal autistic child. Not only is the content compelling, but the work is short and divided into essays and short stories that make it remarkably digestible for such intense subject matter.
For those of you who want more when you’ve finished The Reason I Jump, I strongly recommend Ido in Autismland. In exchange for being a slower read, Ido’s book goes into much more detail and explains various concepts like apraxia, the bizarre disconnect between brain and body that causes a sufferer to take normal actions, but ones other than the one they want to. An apraxia sufferer may want to grab his comb and instead pick up his toothbrush, for example.
Ido’s story focuses on his struggles to manifest his internal intelligence and features as the main antagonist well-meaning but misguided autism experts. The experts would focus primarily on curbing Ido’s “stims,” Ido presents these experts as rigid and extremely reluctant to accept the idea that Ido could be intelligent behind his inability to communicate. Ido also struggles with “stims,” or self-stimulation that frequently manifests itself as flapping of the hands. These stims have an enhanced effect on Ido, and he says they take him into a drug-like reverie.
I have a friend who I’ll call Bob, with an autistic brother in his early twenties, whom I will refer to as Jacob. Bob says his brother was diagnosed with much more than just autism, including severe dyslexia. Nevertheless, Jacob is actually capable of speech and communicates with his brother at a relatively high level, asking questions of Bob like “why are you angry?” He once even responded to a question about whether he ever wanted to date girls with remarkable philosophy, “God didn’t make me that way.” In addition to flapping his hands to stim, Jacob will loudly repeat things that he’s heard in video games like “go ninja!” over and over much to the displeasure of his family members. They call it “babbling.”
My most recent meeting with an autistic person was Kyle, the son of Leonard and Margaret. Names here have been changed as well. When I first met him, Kyle appeared to me to be merely a charming and energetic eight-year-old. I could hardly notice any stims at all, but the minimal speech was apparent. While I was there he took the keys of another house guest and started shouting “Piuter! Piuter!” His mother managed to guess that he was trying to say “computer,” and was rewarded with her son’s energetic approval, which she said was how she could know she had it right. When she said “computer” back to Kyle, he said “computer” in perfect English. Clearly the issue was not motor function. I wondered if it was something more along the lines of recall. Although Kyle said little else throughout the night, the way he played with the toys I brought him, quickly figuring out how to link them together and make one new toy and even taking something from my bag of toys to play with and returning it later without being asked, and especially the way he carefully carried a bowl of dessert to the table suggested nothing more than a normal child with some language challenges. I hope to have more opportunities to see Kyle grow and develop more sophisticated understanding and ability to communicate in the future.
When I sent my speculations to Leonard and Margaret, Margaret had this to say, “I find it interesting (and understandable) that he thinks it’s only a recall problem…with |Kyle| it’s more than that. You may want to tell him about the MRI with the under-developed myleination in the temporal lobe, which is the cause of the lack of speech. The autism is a separate thing from the speech for our boy. His difficulty with speech is because he doesn’t have the neural nerve connection to form the words…I actually think his recall is quite good. Without that additional piece of information, his generalization might have been correct, but with our unique boy it’s more complicated than the standard case.” Reading this I was surprised. If the speech is separate from the autism, I have no idea how the autism manifests itself in Kyle. I encourage those of you reading about Ido or Naoki’s journeys through autism can keep in mind that these are just two cases of an extremely broad diagnosis in which everyone, like Kyle, is unique.