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.


  1. Hello. We've met before. This is one of the aforementioned friends of your son scattered through the country. I spent some time visiting, a few months ago.

    I just wanted to mention that out of all the time that me and him have been friends, he has been just been a wonderful, wonderful friend to me. Just a really really great guy.

    He is indeed very smart. I'm also surprised sometimes by just how amazing he is when it comes to his incredible intellect and creations of his. I've also found him to be extremly talented, funny, witty, fun to talk to, considerate, nice, and fun to be around.

    And having a very very good friend like your son, has made my life better and happier, as well. I certainly treasure his friendship.

    He is one of those one-in-a-million guys who they talk about when they say "A good friend is hard to find." I'm proud to say that your son is the best friend I've ever known.

  2. Hi Mike - I agree, he's a very good friend and a good son too.

  3. he is who is he is. and he will always be. hope to see him and the rest of gang sunday at the party, uncle jack

  4. I knew very little about Asperger's until I read Mark Haddon's wonderful book 'The Curious Incident of the dog in the night-time' which I then reviewed. I think it is like anything else - no two people have the same symptoms and I agree your son shouldn't allow himself to be defined by it. He is who he is - not a label.

  5. I've also read that Mark Haddon book, Scriptor, and I enjoyed it. Another book that gives a good glimpse of what it's like to live with Asperger's is by John Elder Robison,titled: Look Me In The Eye

  6. Deedee, I enjoyed this post. Two lines jumped out at me, "Aspies have to learn things that neuro-typical people know instinctually, such as how to interpret body language." and "Maybe Asperger’s is really just a difference, not a disorder."

    I have a masters of science in special education. I've had a few "Aspies" in my classes.

    I agree with your closing, "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." There are a few who can and will do that. He just needs to find one.

    A favorite book of mine was "What Color is your Parachute." It's really about finding your niche. Maybe he'd enjoy that. I've read it two or three times.

    Thanks for this post.


  7. Deedee:

    Thanks for writing this. I'm going to print it and give it to my daughter. Despite the frustrations associated with this condition and the lack of understanding among most "neuro-typicals" (I so like that distinction), Aspeger kids are amazing human beings. My grandson has so much to offer the rest of the world. I hope he has the chance to give of his gifts. I, too, wish the same for your son.

  8. Hi DeeDee! Thanks so much for sharing this. I didn't know much about this. On one hand that may be a good thing? Sometimes I wonder if we attach so much to the syndromes, that we fail to just see the person as superbly talented and blessed in just a different sort of way? I know you need to know things "medically" at first, but beyond that doesn't it become limiting in itself? I'm asking cuz I don't know. I would hope that his wonderful talent will be shared with the world and I for one will open my arms to embrace him!

  9. I've added the Robison book to my 'to-be-read' list, thanks.

  10. I have known several people with Aspergers Syndrome - one of whom is a fairly close friend. He has been very successful in the music and computing fields. It has never occurered to me that he might be called 'deficient' because he isn't. He is a bit different to the majority of the population. I am so glad that he is otherwise he wouldn't be him.

    I wish your son success and you the reward for your love and perseverance.

  11. It is wonderful that your son doesn't see himself as deficient. Thank goodness that definition has been kept at arms length. On our road of life, the thing we can count on is change..As long as we're here, something can change.. I keep shape shifting, my chidren too..the iffy one is quite good now, the good one, unrecognizable. But good luck to all of you...
    Ah, to turn back the pages...

  12. A friend of mine has is Aspergery, as she likes to call it, and another pal of mine has a daughter who comes under the same heading. I never think of them being afflicted with a disorder. I find I admire every inch of them, especially that which doctors like to consider a diagnosis.

    P.S. Your son sounds like a wonderful, young man. You must be so very proud!

  13. Oh, Gosh, DeeDee. My daughter is a speech therapist, and she works with children with Asperger's. She once suspected her son of having it, and she had him assessed. The assessment was inconclusive, but like your son, my Munchkin is also very bright, but sometimes socially awkward. I believe we all have a degree of something similar to this, and it manifests itself in different ways. There is no giant cookie cutter that makes us all identical. Putting a label of "different" on someone can do more harm than good. I dislike the word "disorder" and would rather think of people as all being special. I think you should be very proud of your son. Not everyone can be in the same category as Einstein, who did indeed have Asperger's. But then, so did Beethoven and Elvis. Not bad company to keep.

  14. That was a great post. Very informative, and for someone like me who knows very little about aspergers, it shed some real light. Best of all things for your family and your bright boy.

  15. Hello, Deedee and family:

    Merry Christmas and Happy New Year!


  16. I hope that your time away from blogland is happy and productive..
    It's been a pleasure getting to know you this past year, and hope for further wishes for the New Year!

  17. Deedee I don't know how I missed this post. but I'm glad I scrolled back today when i saw you had posted again. You have certainly done a wonderful job educating me on this and I have found it valuable info. My brother has two grandchildren with it and they are really wonderful children. I know there are challenges, but you have been an inspiration to me and I'm sure to others as well. I wish your son all the best in his life. Isn't it amazing how children with differing abilties bless the lives of others?