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. 

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!

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.

Only rich kids have disabilities, the poor are just dumb

From the moment my son was born, I have found myself eating my own words.  You'd think I would have learned by now.  Really, they are not tasty words either.  Last night as my husband and I were returning home from a visit to the neuropsychologist’s office, I turned to him and announced, "Hey hon, we are officially rich now."  He looked at me strangely and asked if I was referring to Obama's decision to extend tax cuts.  No, I was reminded of a conversation I had with him years earlier which stuck in my mind.  Shortly after I graduated from college, I went to work for an asset management firm which catered to the country's ultra wealthy.  My responsibilities extended well beyond the financial.  I remember completing college application forms for my bosses' kids and personally delivering them to NYU in a chauffeured vehicle.  I also remember drafting letters to the admissions office.  That is how I learned that both his children were diagnosed with learning disabilities.  One had Tourette's Syndrome and the other child had dyslexia and a number of other conditions I do not recall.  As I heard of more and more children being diagnosed with an assortment of conditions, I had the strange feeling that this was entirely new (I don't recall any classmates or friends having any of these diagnosis) and I noted that the children being diagnosed came from families who fared well financially.  I jokingly mentioned to my husband at one point that apparently only wealthy kids had disabilities, the poor are just dumb.  I realize this statement may seem highly insensitive, so I will explain what I meant.  Really, I just felt that there are just as many children from less affluent families who have the same disabilities, but are not being recognized as such and are not receiving the services they need.  I feel even more strongly about this now.  Tristan's assessment is not yet complete and we have already spent $6,000.  I feel truly privileged to be in a position of being able to afford the cost.  I know many people are not so lucky.  I wonder how many children go through their lives being labeled as "lazy, stupid, dumb, careless and aggressive" when a more appropriate label would be "dyslexic, developmentally delayed, mildly affected, etc."  I know we ourselves fell guilty to labeling our son as "lazy" when he could not dress himself and failed to perform tasks involving several steps.  We now know that he is not lazy at all and it is just a manifestation of his Asperger Syndrome.  All of Tristan's teachers expressed their concern about his inability to complete tasks, his delayed reactions in general and the difficulty they had integrating him to the group.  However, most felt that this was all due to his personality and two of them suggested that we stop "coddling" him so much.  His current teacher has been amazing.  She even apologized for thinking that he was "lazy" and now says that she recognizes he simply cannot do things at the same pace as the other kids.  The manifestations of his Aspergers are so subtle that they were easily missed.  Although I once shunned the labels, I can now say that I am happy he has gone from being "lazy" to being a child with Asperger's. 
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How far does the genetic apple fall from the tree?

Inevitably, once your child is diagnosed with an ASD, the question will arise as to whose got the faulty family tree.  In our case, we know both trees to be rotten.  Really!  There is sufficient evidence that indicates a genetic component to Asperger Syndrome.  I am not sure that either one of us would be clinically diagnosed as having an ASD, but between us we have a preponderance of traits.  As I mentioned earlier, my husband has a huge problem with forming and maintaining relationships.  We have had many discussions about this throughout our marriage.  Even though he has reiterated that he does not feel the need for friendships because he has enough interests to make up for the lack of social interaction (he loves to jog and is a wine enthusiast) he does occasionally complain that he feels isolated.  He tells me that he "has always had a feeling of not fitting in anywhere."  As for myself, I have struggled with anxiety my entire life and have had several episodes of panic attacks.  I also suffer an occasional bout of depression which typically last several months.  I have a huge problem with change in my life and I have hypersensitivity to sound.  Tristan's doctor was particularly interested in the panic attacks.  I am not sure why that is the case. 

My good friend tells me that "we all have our issues" and I couldn't agree more.  Most people I know do have their own set of issues.  I guess it really does not matter why our son has AS although you can't help but wonder.  I wonder if taking my prenatal vitamins would have made a difference.  I couldn’t take them because I would vomit immediately.  I wonder if it was the medication my doctor prescribed for morning sickness.  I guess we will never fully understand the why.  I do know that I love him just the way he is. 

The 7 Year Puzzle Comes Together

It is our first meeting with the child Psychologist and she asks when the first time I noticed something unusual about my child was.  In all honesty, until a few weeks ago I had no idea there was anything wrong with him.  Yes, there are things about him that are a little bit odd, but nothing that alarmed me to the possibility that he may have a problem.  My husband, on the other hand suspected it long ago.  He did so not because he found Tristan's behavior odd or concerning.  It was a serendipitous discovery.  I will discuss that later since it is a story that will make you believe in fate (or something).  Well, we had to open up the closet and let all the skeletons out.  We talked about my brother's schizophrenia and drug abuse, my struggle with anxiety and depression and my husband's self imposed isolation and lack of friends.  Luckily, my father's death due to AIDS did not come up as a topic of discussion. 

When my husband first brought up his suspicions, it was as we were walking to the train on our way to work.  We had just had a meeting with Tristan's first grade teacher.  I requested it to discuss some issues he was having in school.  Really, I thought I would just reassure her that he always experienced these same problems at the start of each year (nursery, preK, Kindergarten had all been the same).  She indicated the same concerns each teacher had voiced in the past.  There was a problem integrating him into the group.  He could not complete his tasks and he was very slow in doing such things as getting ready to go home.  She suggested that maybe I "coddled" him too much and really needed to have him be more independent.  "These are skills he should have mastered years ago," she said.  I left wondering what the big deal was if it took him a few more minutes to put his coat on.  As we walked out of the meeting my husband said "Do you think he may have a problem?"  I was sure he did not.  There was a short silence and something made me think he had a particular concern so I asked him what it was.  He then asked me to look up Asperger's in the internet and I obliged as soon as I got to work.  I did so to check it off the list as a possibility and initially I did just that.  Tristan did not exhibit any of the classic symptoms on the checklists I pulled up.  He is not shy, he does not rock or flap his hands, he wears anything I put on him, he is loving etc.  However, as I looked further I found some very detailed lists that gave me cause for concern.  He cannot ride a bike (even with training wheels), he covers his ears often when the environment is too loud, he cannot maintain eye contact and is clumsy, he lectures us and is obsessed with war and the military.   I felt relieved and sick in equal measure.  Everything now seemed to make sense.  The puzzle was coming together.