The Search For A Cause

This is the third of a multi-part series of postings that’ll describe our life with our son up to today. During the course of this series you’ll learn about the symptoms of an Autistic child that started to materialize in our son, how he received his diagnoses, the importance of a support network, the various organizations that helped us, the various therapies he’s received, what’s worked and not worked for us and what’s in store for our future.

I’d already noticed that Julien was different, but then, what child isn’t different?  And besides, I celebrate each person’s uniqueness and didn’t need my son to be like everyone else’s.  However, once Julien was officially diagnosed, it was hard for me to continue thinking that this was all a figment of my wife’s imagination or just a set of quirks that could be a charming signature.  There were ominous implications about his future.  Julien was in a “category”, a doctor had pronounced him “disabled” and I couldn’t ignore the facts any longer. 

This is not to say that I immediately accepted the label, got on board with my wife’s plan to get him services and started researching what Autism Spectrum Disorders are; that has only fully happened in the last 12 months (!).  Frankly, my first concern was to figure out what caused this.  I had heard that Autism was a genetic disorder and I took it pretty hard that I might have somehow contributed to the potential discrimination he’d face.  Of course, part of me wondered whether it was my wife’s side of the family that was responsible, which in fact is a telling sign of what was happening in my mind. 

I began to imagine the worst of the life my son would lead and wanted someone to be accountable for the pain I expected he’d live through.  Never mind that if the cause were in fact genetic, and I had wanted to have a child with my wife (which I did), there was no other option than to have an Autistic child.  And never mind that when we learned of our pregnancy, we were offered an amniocentesis test and we turned it down.  I realize that there is no test during pregnancy for Autism, but we had discussed the possibility of having a child with a genetic disorder, had accepted this possibility and were ready to take it on. 

But I certainly wasn’t thinking rationally.  This was even more clearly evident when I started trying to pinpoint which side of the gene pool contributed to his disorder, and I was confused about what the future held for my family.  I was emotionally vulnerable, extremely anxious, and downright confused about what lay ahead.  So, it was with great relief that I came across the book “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karyn Seroussi. 

This book told the story of how a mother saw her son go from normal development to missing development milestones shortly after receiving his MMR vaccines.  As I remember (it’s been years since I read it), the book went on to propose all kinds of scientific hypotheses that explained why certain children were Autistic: the vaccines somehow created an immune deficiency in certain children, this somehow created a “leaky gut”, then gluten and casein (from wheat and milk products primarily, but apparently in many, many other food products), leaked into the bloodstream and resulted in the drugged out look and behavior of autistic kids.  For the record, I have not reread the book; this is all from memory. 

I was delighted beyond belief.  This book effectively told me I hadn’t caused my son’s autism; I started to believe that it was the government’s fault, because they’d required me to vaccinate him.  Better yet, there was a way to deal with the symptoms: the Gluten Free, Casein-Free diet.  The second part of the book, detailed how to eliminate your child’s body from all of the components in his diet that were “causing his autism”.  But once I tried it, I was not so delighted. 

We were a single child family at the time, so doting on my son was not unusual for us, but this diet nearly broke us in many ways.  I’m the one in the family that enjoys cooking, so I took on the challenge of creating my son’s special foods (because finding prepared foods on the diet is difficult). I immediately identified all wheat and dairy food products in our house and “blacklisted them” from his diet.  I then visited our local supermarket reading labels to familiarize myself of the possibilities.  Seeing that a typical grocery store didn’t contain much to choose from, I made my way to specialty food stores like Whole Foods (called Whole Paycheck by some of my friends) and a more affordable alternative, Trader Joes. 

There I stocked up on all the foods that Ms. Seroussi recommended at the time for “the diet”: Soy Milk, Gluten free grains, organic meats and vegetables.  I knew my son was fond of baked goods, so I made my own Gluten free bread and cookies.  I even made Gluten and Cassein Free Chicken Nuggets, his favorite.  We made no prepared foods and rarely ate out, choosing to cook all our meals at home.  We did this for a long 2 months and watched carefully for a change.  We saw none. 

(I was recently told by a friend who follows this diet very strictly that Soy Milk might have been the cause for failure…apparently this is now known to be interpreted by the body the same as Casein.  She also stated in her message that following the diet 99% of the way is not good enough, only complete adherence can generate visible results, but that when it’s done properly, children start speaking and making eye contact, disabilities become abilities, etc.  Typically, you start to see results after 8 months, she told me.) 

With our apparent failure, I was back in a void.  However, I remembered that the books’ author had proposed that all of her son’s symptoms had begun shortly after his immunizations.  I pointed this out to my wife and asked her not to take our son in for the MMR vaccination.  We seriously considered it, but wondered how he’d be admitted into school without his shots.  We postponed the appointment, just in case, but eventually we were faced with the prospect of having to home-school Julien.   

We knew that if he attended school Julien could qualify for Speech Therapy, Occupational Therapy and Behavioral Therapy, amongst other treatments, and our friends assured us that vaccines were not the cause.  In fact, this was sometime in 2003 and since the FDA had removed all Thimerosal (the mercury agent suspected of causing autism) or left only trace amounts in all vaccines required for children under 6 years of age, our concerns were misplaced.   

If in fact damage had been done, it had been done in the first two years of his life.  I say “if” because, although Thimerosal has been virtually eliminated from vaccines, the rate of Autism continues to rise, which should cause one to believe that the problem is not with Thimerosal.  This is a source of much debate, one that has divided most of the people in the Autism community into two camps similar to the Hatfields and McCoys, the Jets and the Sharks or the Republicans and Democrats: I like to call them “the Mercuries” and “the Genetics”.  More on this in a later posting. 

So, you might wonder, what was happening with Julien while I mulled over all the possible causes for his disability?  He was soaking up all kinds of information around him.  He would pretend to read the newspaper and ask me how different words were pronounced.  Then he actually started memorizing letters and their sounds, all at his own prompting.  He would see signs and memorize them based on their look (McDonalds was one of the first, I hate to admit).  By the time he got to preschool at age 5, he was already reading the more complex of Dr. Seuss books. 

After memorizing signs, he started memorizing street names.  The kid might not say two words at us at home, but when we’d get in a car, he’d always want to know what street we were on.  As soon as we made a turn, he’d want to know the next street’s name.  We were mostly intrigued by his thirst for this information (I figured he’d at least be a great taxi driver), but often annoyed because it became impossible for the adults to have a conversation in the car.   

We didn’t realize the extent of Julien’s memorization ability, until one day I had to stop by the office on a Saturday and I took him along in the car.  He asked me where we were going, I told him, and he asked me whether I was taking Maurice, to Crown Ridge to Ivy….he described every single street (10) and every turn (8) I’d need to take! 

I was stunned, but not as stunned as during the next demonstration of his memorization capability.   One day, when he was closer to 5 years old, Julien asked me what day of the week my birthday was on this year.  Not wanting to give it much thought, I said Tuesday.  He looked off into space and corrected me, “No it’s on a Friday”.  I looked at his face to see if he was joking and he stared back with cold certainty.  I ran through the door of my house and found a calendar.  He was dead right! 

I quizzed him on his own birthday, his mom’s, Thanksgiving, Christmas and other important days (to him) and he determined the day of the week correctly in each case.  I then started asking him to do it on random dates (e.g. October 15 this year, July 12 next year) and he was able to do it about 60% of the time.  I realized what he’d done was memorized the day of the week in the previous year and then shifted it by one day for each year.  Ok, so he hadn’t memorized every year’s calendar, but it was amazing that he had figured this “algorithm” out on his own. 

I started to think about my own childhood, and I remembered being fascinated by books at a very early age.  I also remember my dad telling me that I would throw tantrums that lasted a very, very long time.  I also remember him telling me that he’d felt he had to get me out of Cuba before I was indoctrinated because I tended to see everything as black and white (an allusion to my inflexibility?) and he feared I’d turn Communist.  I also had a better than average memory when growing up. 

So was this proof that my own Autistic tendencies had been the cause of my son’s own?  I don’t know, but it was interesting that as soon as being Autistic had some perceived strengths, I was ready to take credit for my genetic contribution.  The one thing that was certain is that my son was indeed different.  Unique and special, and by that I didn’t mean “special”.  He had talents and he had issues and together, this was what made him him.  This is when I truly started to appreciate and accept him, when I started letting people know that my son was Autistic.