Thursday, September 15, 2011

The light bulb goes off!

As I mentioned on a prior post, my husband was first to realize that our son may have Asperger Syndrome.  He made the discovery while reading Michael Lewis' "The Big Short." My friend had given me the book.  It sounded rather boring to me, but at his insistence, I began to read it and found that I could not put it down.  I enjoyed it so much that I passed it on to my husband.  He was also fascinated by it, but when he reached the following excerpt, he froze, put the book down and Googled Asperger Syndrome. 
"Not long before, his wife had dragged him to the office of a Stanford psychologist. A pre-school teacher had noted certain worrying behaviors in their four-year-old son, Nicholas, and suggested he needed testing. Nicholas didn’t sleep when the other kids slept. He drifted off when the teacher talked at any length. His mind seemed “very active.” Michael Burry had to resist his urge to take offense. He was, after all, a doctor, and he suspected that the teacher was trying to tell them that he had failed to diagnose attention-deficit disorder in his own son. “I had worked in an A.D.H.D. clinic during my residency and had strong feelings that this was overdiagnosed,” he said. “That it was a ‘savior’ diagnosis for too many kids whose parents wanted a medical reason to drug their children, or to explain their kids’ bad behavior.” He suspected his son was a bit different from the other kids, but different in a good way. “He asked a ton of questions,” said Burry. “I had encouraged that, because I always had a ton of questions as a kid, and I was frustrated when I was told to be quiet.” Now he watched his son more carefully and noted that the little boy, while smart, had problems with other people. “When he did try to interact, even though he didn’t do anything mean to the other kids, he’d somehow tick them off.” He came home and told his wife, “Don’t worry about it! He’s fine!”
His wife stared at him and asked, “How would you know?”
To which Dr. Michael Burry replied, “Because he’s just like me! That’s how I was.”

Their son’s application to several kindergartens met with quick rejections, unaccompanied by explanations. Pressed, one of the schools told Burry that his son suffered from inadequate gross and fine motor skills. “He had apparently scored very low on tests involving art and scissor use,” said Burry. “Big deal, I thought. I still draw like a four-year-old, and I hate art.” To silence his wife, however, he agreed to have their son tested. “It would just prove he’s a smart kid, an ‘absentminded genius.’”
Instead, the tests administered by a child psychologist proved that their child had Asperger’s syndrome. A classic case, she said, and recommended that he be pulled from the mainstream and sent to a special school. And Dr. Michael Burry was dumbstruck: he recalled Asperger’s from med school, but vaguely. His wife now handed him the stack of books she had accumulated on autism and related disorders. On top were The Complete Guide to Asperger’s Syndrome, by a clinical psychologist named Tony Attwood, and Attwood’s Asperger’s Syndrome: A Guide for Parents and Professionals.
“Marked impairment in the use of multiple non-verbal behaviors such as eye-to-eye gaze … ” Check. “Failure to develop peer relationships … ” Check. “A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people … ” Check. “Difficulty reading the social/emotional messages in someone’s eyes … ” Check. “A faulty emotion regulation or control mechanism for expressing anger … ” Check. “One of the reasons why computers are so appealing is not only that you do not have to talk or socialize with them, but that they are logical, consistent and not prone to moods. Thus they are an ideal interest for the person with Asperger’s Syndrome … ” Check. “Many people have a hobby.… The difference between the normal range and the eccentricity observed in Asperger’s Syndrome is that these pursuits are often solitary, idiosyncratic and dominate the person’s time and conversation.” Check … Check …Check.
After a few pages, Michael Burry realized that he was no longer reading about his son but about himself. “How many people can pick up a book and find an instruction manual for their life?” he said. “I hated reading a book telling me who I was. I thought I was different, but this was saying I was the same as other people. My wife and I were a typical Asperger’s couple, and we had an Asperger’s son.” His glass eye no longer explained anything; the wonder is that it ever had. How did a glass eye explain, in a competitive swimmer, a pathological fear of deep water—the terror of not knowing what lurked beneath him? How did it explain a childhood passion for washing money? He’d take dollar bills and wash them, dry them off with a towel, press them between the pages of books, and then stack books on top of those books—all so he might have money that looked “new.” “All of a sudden I’ve become this caricature,” said Burry. “I’ve always been able to study up on something and ace something really fast. I thought it was all something special about me. Now it’s like ‘Oh, a lot of Asperger’s people can do that.’ Now I was explained by a disorder.”
He resisted the news. He had a gift for finding and analyzing information on the subjects that interested him intensely. He always had been intensely interested in himself. Now, at the age of 35, he’d been handed this new piece of information about himself—and his first reaction to it was to wish he hadn’t been given it. “My first thought was that a lot of people must have this and don’t know it,” he said. “And I wondered, Is this really a good thing for me to know at this point? Why is it good for me to know this about myself?”
He went and found his own psychologist to help him sort out the effect of his syndrome on his wife and children. His work life, however, remained uninformed by the new information. He didn’t alter the way he made investment decisions, for instance, or the way he communicated with his investors. He didn’t let his investors know of his disorder. “I didn’t feel it was a material fact that had to be disclosed,” he said. “It wasn’t a change. I wasn’t diagnosed with something new. It’s something I’d always had.” On the other hand, it explained an awful lot about what he did for a living, and how he did it: his obsessive acquisition of hard facts, his insistence on logic, his ability to plow quickly through reams of tedious financial statements. People with Asperger’s couldn’t control what they were interested in. It was a stroke of luck that his special interest was financial markets and not, say, collecting lawn-mower catalogues. When he thought of it that way, he realized that complex modern financial markets were as good as designed to reward a person with Asperger’s who took an interest in them. “Only someone who has Asperger’s would read a subprime-mortgage-bond prospectus,” he said."
At first he thought he must be wrong.  This was too weird.  He immediately bought Tristan a bike.  Many kids with AS find it difficult to ride one and my husband wanted to prove that Tristan could indeed ride a bike.  This, he felt, would alleviate his fears.  Unfotunately, after months and months of trying to teach him in vain he had to admit that there were too any coincidences.  I was angry that my husband conducted these "experiments" without my knowledge.  He never told me what he was doing until much later when he had finally concluded that Tristan met a good amount of criteria for AS.  I recalled how he was crying in the kitchen one day and told me that "Tristan was going to be just like him."  I did not understand what he meant at the time and why that would be something to cry about.  I wish he had spoken to me sooner. 

Thursday, April 14, 2011

An Alphabet Soup of Disabilities


Well, I have now had plenty of time to absorb Tristan's diagnosis.  In between, I also had to absorb a more disturbing diagnosis at home, but this is not a blog about my husband, but instead about our son.  The full assessment has now been received.  We were a bit surprised as to the severity of the learning disabilities he has been diagnosed with....most notably the dyslexia.  My husband and I had long suspected he was dyslexic since spelling is the one area he scores consistently below avearge.  Tristan has been receiving scores in the 40's in spelling since he began first grade.  In al other subjects he displayed inconsistent achivement sometimes earning 90's and as low as 50's.  Here comes the really perplexing part.  A few months ago I tried implementing an icentive program.  I told Tristan that for every test he scored above 80, he could buy a lego minifigure from Ebay.  He loves legos so I thought this may work well.  We never expected it to work so well!  Since I instituted this instant reward program, he has brought home nothing but 90's (including in spelling).  We are left asking ourselves how it is that a child diagnosed with an alphabet soup of learning disabilities is able to do this???  Honestly, I don't know the answer.  Is he just smart enough to be able to overcome his disabilities on his own?  Does he really have dyslexia?  His sudden and dramatic improvement has put everything into question.  The one diagnosis we are still sure of is the Asperger’s.  Although he has not exhibited the disturbing behavior that prompted our concerns at the beginning of the school year, there are still the subtle signs and historical situations that lead me back to confirming the diagnosis.  Most children (and adults with AS) exhibit intense interest in one or several subject matters to the exclusion of all others.  My feeling is that Tristan was not able to do well because he simply did not think it was important.  No, I don't think he's a genius, I think he has some difficulties with the work.  However, I think his attitude was one of "learning this will require some effort which I am not willing to put in."  By incentivizing him to do so hi grades have soared in just a few months.  His teacher is equally amazed although I think she credits herself with the drastic improvement.  In any event, we are all happy of the progress he has made not just academically, but in all other areas as well.  He is much happier and relaxed and that is what is most important to us!



Tuesday, January 25, 2011

How Bad is Aspergers?

When I first suspected Tristan may have Aspergers, I did what anyone else would do, I turned to the internet.  Now, I will admit I have not learned my lesson yet about doing too much research on the net.  Although it is highly informative, it is a dangerous tool when used by someone completely ignorant on the topic they are researching and when it is being used as a single source of information.  I remember crying when I read that by third grade "The Aspergers child will have no friends."  I felt consoled when I read that "Many people with Aspergers marry and lead fulfilling lives" only to plunge again into depression when I later read that "Most people with Aspergers have difficulty completing college, finding employment and forming relationships."  What will happen to my child?  I thought.  How bad can this be? 

If you look at Tristan, he seems like a typical child.  He does not look like a child with a problem.  By now I have realized that the information I found and digested was, for the most part, simplistic.  I have read about amazing people like Michael Bury who is an accomplished Doctor and entrepreneur.  He has a family and children.  I read about John Elder - another amazing man who has succeeded in every thing he set out to do.  I realize that Tristan's future is as uncertain as any other child's.  I can only guide him and help him achieve his full potential.   He will always have the full support and love of his parents.  The biggest disability a child can have is a family that is not supportive.  That is one disability Tristan is lucky enough not to have.