on 26 January 2011
Thomas McKean was born on Paul McCartney Day, June 18, 1967. Interestingly, over time June 18, which has been recognized as Paul McCartney Day has also been given the honor of National Autism Day. Paul McCartney's first and former fiancee, Jane Asher is currently involved with autism in England. Sadly, Thomas, the 3rd of 4 children, was born during the Dark Ages when autism was viewed as emotional/psychological instead of the neurobiological condition that it is.
Some of Thomas' early autistic behaviors included a delay in speech; sensitivity to sounds and texture and a limited range of food preferences. He even said that to this day he derives comfort in watching spinning objects.
Sadly, Thomas suffered some horrendous treatments and experience. From early childhood, he was taken to a round of doctors; submitted to the same battery of tests and was never given any real answers. It was not until March of 1991, nearly 10 years after he served 3 years in a hospital that he discovered his true diagnosis - autism!
Thomas, at the behest of his school and recommending physician was admitted to a hospital where he served a harrowing sounding 3 years. His sentence commenced on July 3, 1980 and he was released the late summer of 1983. During his time there, the treatment he was subjected to was appalling. For starters, there was one co-ed pod which the young inmates vied to stay in and two other pods, one for boys and the other for girls. One wonders why there would be a co-ed pod with an adolescent age group in that setting.
In an especially harrowing case, another inmate dangled Thomas over the bridge leading to the hospital, literally threatening his life. Fortunately the bridge design has since been remodeled, but it does beg the question of why the place did not have staff supervising that bridge.
The "therapy," if it can be called that included being locked up if one were to hug or touch another affectionately while being punished for another infraction. Early Bed Time (or EBT) as it was called there meant that certain infractions could cost a person a half hour each day and in some cases, inmates were sent to their rooms as early as 4:00 p.m.! If that was not bad enough, one could not leave their room, even to use the bathroom. That resulted in some nasty bathroom incidents in the rooms which could be blamed on the staff. They created that problem and then had the chutzpah to blame the kids for what they had caused!
Another ignominious and, to my way of thinking useless exercise was for a therapist to tell someone to throw a ball of clay on a mat. Thomas points out that for many with sensory issues, the feel of the clay and the sound of it hitting something is quite unpleasant. How true. To make matters worse, instead of LISTENING to Thomas and his fellow inmates, the doctor focussed attention on that damn clay. Thomas raised excellent points about how questionable at best the methods there were. One also wonders why Thomas' parents did not visit him during that 3 year sentence.
Once released, Thomas made friends, starting with Gwendolyn and Michael, a very spiritual couple who helped him discover many of his own talents. He would later make contact with Mira Rothenberg, author of Children with Emerald Eyes: Histories of Extraordinary Boys and Girls and founder of the Blueberry School in New York. He wrote her in March of 1991 and by August of that year was giving talks at the Autism Society of America (ASA). Thomas even said that for the first time in his life he felt needed.
A gifted man, Thomas customized his watch to perform other functions in addition to reducing the pressure on his wrist. He also devised a telephone that was not too loud and not uncomfortable on his ears. Thanks to Annabelle Stehli, whose daughter Georgiania was helped through Auditory Integration Training (AIT), Thomas also underwent this treatment with middling results. It was during this period that he became active in the Autism Community in his native Ohio and was also an advocate.
One part that made me angry was the way Thomas was treated on a return flight. Airline staff treated him with condescension and refused to let him out of their sight until he cleverly dodged a guard, only to stroll leisurely back to board the plane. He later learned that a friend had called the airline and informed flight staff of his autism. He naturally chafed at this ignominious treatment by the flight staff and felt, in his words that he was being treated like some darn "Rain Man," which has become a slur in the Autism community. One fictional prodigious savant does NOT represent the group at large. It is ironic that prodigious savantism has become a stereotype because less than 10% of the autism population even has savant abilities! Thomas even said that during his sentence, a fellow inmate wanted to be autistic as he believed people with autism had savant abilities. Fewer than 10% do.
The latter part of his book is an outline of key bullet items about having autism and what his personal experience has been. He has also included his poems and songs in the book, all of which are high caliber. One part of the book that might catch a reader off guard was his treatise on buying bears. I admit that I initially thought that part was his attempt at throwing in a little levity. In reading it, one could see this was serious and a heartfelt need on his part. Readers came away understanding the origin of that need. In dire need of love and affectionate touches, Thomas goes into excruciating detail on how to acquire bears and what properties to look for in them. That to me seemed extraneous.
I rate this two stars because I found it rather choppily written. I admit that I really did not care for this book. I also didn't like the treatise on bears. While this book provided good information about one person's experience in living with autism, it often felt like it was flagging and sagging in places. I didn't feel this book had the kind of momentum to push it along to the points he was trying to make. There were gaps in the story that left one wondering, such as more about the roles others played in his life. Fortunately, Thomas had Gwen and Michael. While many others enjoyed this book, that's well and good.