Friday, December 4, 2009

Our Son and Ben Franklin

In 1982 my first child was born; a son. Being only 26 years old and having no experience as a parent, I was nonetheless completely undaunted. I was extremely confident in my ability to raise a child. I looked around me at all kinds of people with kids and was sure I could do as good a job, if not better than they had.

Some early milestones came late for our boy. He crawled and walked behind schedule, but I wasn’t too concerned. It was plain to see that he was a bright, happy boy and apparently healthy in every way. When he finally decided to speak it wasn’t one word, it was a sentence. As I unlocked the car door one afternoon, he looked up at me and asked, “Go bye-bye in da car now?” much to my astonishment.

One day my sister took him up on her lap to read to him. She had just bought him a new book, and as she turned the pages, she asked him if he would like to read it himself. She nearly fainted when he opened his little mouth and began to read out loud. He was a little over two years old. I’d always gone slowly and run my finger under the words as I had read to him, and I was aware that he knew many “sight words”, because he would point to signs and say, “Bus!” or “Stop!” or “Open!” as I pushed him around the neighborhood in his stroller, but that was the first moment that I realized he could actually read.

The first two years of his life were pretty happy and otherwise unremarkable. When he was just over three years old, we thought we’d better get him into nursery school to nurture his budding intellect and give him the opportunity to socialize with other children. That’s when the difficulties started. While the other children were coloring and playing with blocks, my son was writing full sentences on the posters that decorated the classroom walls, or hiding under a table, refusing to come out.

Our son was no longer the happy, rosy-cheeked boy he’d been. We had never had any problems with him at home, but once he got to school, it seemed he just could not behave. He hated school and had difficulty making friends. He had started to cry and pull back as we approached the door of the school each morning. He would beg me not to make him go in. It was a struggle just to get him inside the building every morning, and then the teachers would usually end up calling me after a few hours, asking me to come and get him because he was running in circles around the room and they couldn’t get him to stop. One day he was able to sneak out of school just before I was due to pick him up. He managed to make it twenty or so yards down the sidewalk next to a busy street before I spotted him.

At the urging of the nursery school staff, we brought him to Boston Children’s Hospital for evaluation. The teachers weren’t sure what was wrong, but they couldn’t handle him and thought perhaps the Child Development Lab at Children’s could get to the bottom of it. So began the long years of going from doctor to counselor and back again in an endless loop of expense and frustration. His I.Q. was tested and found to be just below what is considered genius level. They told us our son was gifted and all his problems, no doubt sprung from that fact. We took him to an eminent neurologist who came to the same conclusion. A child psychiatrist (the first of many) decided he had Attention Deficit Disorder. Another was sure he suffered from clinical depression. They prescribed medicines that seemed to make everything worse instead of better. Somehow, I knew that none of these opinions were correct.

Finally, when he was eighteen and in his senior year in high school, a doctor told me that our son had a form of autism known as Asperger’s Syndrome. I was skeptical, because I had heard so many wrong diagnoses in the past, but he wrote down the name of a book by Tony Attwood, and told me to look for it. I found it in a book store that evening and read it from cover to cover. I saw my son described on every page. It was a relief to know that we weren’t crazy – something really was different about our boy, but it was unbelievably frustrating to know that if we had gotten a correct diagnosis years ago, we might have been able to get him some appropriate schooling that would have helped him cope and adjust to it.

Asperger’s syndrome is a condition that is on the autism spectrum. Some of the hallmarks of Asperger’s are the inability to make eye-contact or read facial cues, which causes social awkwardness, and the tendency to focus intensely on one field of interest to the exclusion of most everything else. Many have repetitive habits such as rocking back and forth when standing or sitting still. Aspies tend to be very literal, sometimes having difficulty understanding figures of speech and sarcasm. If you were to jokingly say: “I’ll kill you!” to a person with Asperger’s, it might make them fear for their life. Aspies have to learn things that neuro-typical people know instinctually, such as how to interpret body language. Many with Asperger’s have strong natural aptitudes in music, art or math and some are considered savants. It is now strongly suspected that Albert Einstein, Ben Franklin and Vincent Van Gogh all had Asperger’s syndrome.

My son is a talented artist and also excelled in math when he was in school. He struggled through the harrowing social mine field of high school, and attended art college for one year, and a technical school afterwards, eventually earning a degree in computer-aided drafting, but at least partly because of his difficulty in navigating the interview process, he has been unable to find a job in his field. He pays his bills with a part-time job at a convenience store and by doing freelance and commission art work. Last year, he decided to go to Japan by himself, much to our horror. He went and spent ten days in Tokyo, finding his way around the city by himself and having a great vacation. I thank God that he got home safely. He currently still lives with Mac and me, but yearns to have a place of his own. He has 3 friends, two of whom he met in kindergarten, but they are scattered around the country, so he spends his free time by himself.

Our son is not comfortable with the diagnosis of Asperger’s Syndrome and refuses to be defined by it. He thinks of himself as different, but not in any way deficient. In truth, there are more than a few doctors and other experts who now believe that neurological functioning is really a continuum and we are all spaced out along it, with the more typical people closer to one end, and those known as Aspies closer to the other. Maybe Asperger’s is really just a difference, not a disorder.

When he was a toddler, reading books and doing math, everyone was sure he would be an incredible success. All agreed that his talent and intellect would insure a bright future. It is still my hope that someday soon, someone will look beyond the eccentricities that hold him back and give him the chance he needs to shine his light on the world.