Autism, which has burst into public consciousness in the last few years, is known as a spectrum condition, in which people exhibit autistic behavior along a scale from high functioning to low functioning. Writer Ralph James Savarese, the adoptive father of 12-year-old DJ, is the latest to pen a saga of what it’s like to live with autism.
One keen insight Savarese brings to the table is that autism is universally perceived with reference to average human beings as the norm. To the extent that an autist’s behavior deviates from that norm, we treat it as a disease to be cured. Within the growing autism community, however, a movement is growing to portray it as a way of life rather than as a disease to be cured.
Consider my six-year-old grandson Toby, for example. He was diagnosed autistic four years ago, and intensive one-on-one therapy since then has allowed him to speak fluently, to relate to others to some degree, and to function in a mainstream first-grade classroom, albeit with the presence of aides. His perseverative behavior — hand-flapping and obsessively repetitive behavior, for example — has lessened markedly. But his parents realize that Toby will likely need supportive help of some kind for the rest of his life, even though a realistic expectation is that he’ll be able to live independently as an adult.
But like many high-functioning autists, Toby exhibits strong signs of Asperger’s Syndrome — a savant quality that enables him to run rings around kids his own age in certain specific areas. He’s long been fascinated with maps and regularly studies the schematic route maps of the MBTA system in his hometown of Boston. He can direct a driver, street by street, from his home to that of his grandparents in Hartford, something his highly talented 10 year old cousin would be at a loss to do. The point of all this is that we can learn from and value people with autism for their own impressive gifts.
When the author adopted DJ at age 6, he was entirely non-verbal and seemed unable to communicate. Six years later, he still doesn’t speak but types fluently, aspires to become a writer, and even wrote the last chapter of the book. While parts of that chapter can be difficult to understand — Toby edited it himself — it provides a wonderful window into his mind. He has a profound distaste for testing, for example, and characteristic of autistic people, he seems to have made that distaste a somewhat obsessive fixation.
One highly useful construct Savarese employs is to compare DJ’s situation with that of the genius Stephen Hawking, who though non-verbal because he has Lou Gehrig’s Disease, has learned to type on a computer by moving his eyes. So basically, Hawking and DJ started from the common condition of having something to say but needing help to get it out. Savarese’s book is an inspiration, and his son DJ is a boy to watch in the years ahead.