“He Isn’t Learning Through Reading!” How I Discovered Hyperlexia

By the time my son was 15 months old I knew something was  wrong.  When I tickled him he never  reacted.   When I called his name he didn’t respond.   It was just before his third birthday he was  diagnosed with classic autism.  I was  told he was neither high functioning or severe.
Moderately affected was the phrase they used to describe him.   He also had a number of accompanying  disorders such as Auditory Processing Disorder and Sensory Dysfunction.  I was devastated and I grieved the loss of  “normal” expectations I unconsciously had of him.  But I didn’t have the luxury of being  paralyzed by his diagnosis for long.   He  was not my only child and with a daughter only slightly older and a husband who spent a lot of time away with the Air Force, I reluctantly picked myself up and  began the journey.  Being a teacher I felt  completely responsible for my son’s education and wellbeing.  I took it upon myself to research and implement  whatever psychological, biomedical and environmental interventions I thought  could benefit him.  I tried diets and  supplements, occupational and speech therapy, and approximately 15 hours of ABA a week.   I am not going to pretend I was  okay in those early years.  In all  honesty, I was an emotional wreck, holding on by the simple fact that I thought  I was responsible for his “recovery.”  I  remember pouring over autism websites that issued instructions for 40 hours a  week of ABA and countless therapies that would ensure his recovery and I felt  completely inadequate.  I felt guilty for  not doing more.  It was a vicious cycle  of misery.

As my social circle began to morph into friends also with  children on the autism spectrum, I started to notice the difference between my  son and others.  No one else in my circle  of friends ever reported their son or daughter being obsessed by numbers or  letters.  Rubbish trucks and posting and  lining up of objects perhaps, but never the alphabet.  I didn’t think about the significance of this  at the time.  Perhaps I was simply satisfied that this was his particular area of obsession.  It became obvious in my ABA work with him that this obsession was in  fact very significant.

I remember trying to teach him the concept of long and  short.  No matter how many times I showed  him and explained it, he could not  demonstrate he understood.  I thought perhaps if I wrote down the words  he would be more likely to focus.  After  all he loved the alphabet and I was willing to try anything.  What I discovered was miraculous.  He could remember and associate the word with  the concept but only if the word was in writing.  I would attach a written word to concepts and  he could differentiate between them.  Eventually,  I could then attach the written word to the spoken word.  The spoken word was more likely to be  forgotten, but had a better chance of being remembered with the aid of writing.  How could this be? As an early childhood  teacher, and having taught children to read for some years, this made little  sense to me.  What did make sense was  that I had discovered something that could help him.

I was excited.  I made  appointments to see the team of professionals that were looking after his  development.  This included his teacher,  psychologist, speech therapist and pediatrician.  One by one they dismissed my claims.  They attributed his ability as a mere rote  based memory skill that was devoid of meaning.  How could this be?  I was  devastated once again.  I knew I what I  had discovered.  I knew he could do  this.  They tried to insinuate that I was  grasping at straws and that I should just accept the reality of his  limitations.  I was determined that I was going to give him every chance to succeed.  I started to teach him everything using writing.  It was his window to the world.  I carried a mini whiteboard with me  everywhere and in place of talking to him, I wrote.  In kindergarten he was in the top 2% of the  state in reading, albeit with limited comprehension, but he was beginning to  understand the world around him.  It was  then that I returned to the Internet.  This time I typed in “reading to learn.” 

I found a number of links that discussed  children with Down syndrome.  Some  mothers had found that by teaching their toddlers to read, their learning  improved faster than by speech alone.  I  felt confident that I was looking in the right place.  I stumbled across the term “precocious  reading”, which essentially meant very early reader.  I had never taught my son to read.  It seemed to be his first language.  He learned to read in the same way most  people learn to talk.   He spent an  inordinate amount of time in front of the fridge playing with magnetic letters,  sounding out sounds and saying the names of the letters repeatedly.  I typed into the search engine “precocious  reading “along with “autism” and hit the jackpot.  Hyperlexia.  It described a disorder that matched my son perfectly.  It described a precocious reader that struggles with language comprehension and showed many characteristics of  autism.

According to Wikipedia, approximately 5-10% of all children  with autism are hyperlexic.  There are  many people who believe that hyperlexia, being the other extreme of dyslexia, is a stand-alone disorder.  Others believe that everyone who is hyperlexic also has autism.  For my son, I believe that it is an  accompanying disorder.  He has not grown  past his symptoms of autism as they suggest in some hyperlexic literature, but his verbal comprehension is vastly improved.   The auditory processing disorder still makes it difficult for him to be  as eloquent as his same aged peers and his lack of abstract thought also  impedes his comprehension, but he is a far cry from the little boy who didn’t  understand anything I was saying to him at 4 years old.  He attends mainstream school as a Grade 5  student with a teacher assistant that is required less and less.  I’m very proud of all his efforts.  He tries very hard to achieve what he does.

The lesson I learned from this experience it is wise to  trust your instincts.  You know your  child better than any professional.   Clearly professional advice is to be sought but if I had listened to my  pediatrician, who offered me these sage words of advice, “Just concentrate on  your daughter,” I would not have had the joy of watching my son learn with his  greatest strength assisting him.  What  beautiful lessons our children on the spectrum teach us.  Without doubt, it is a struggle at times, but  seeing them develop, makes those struggles worthwhile.  He has changed me forever. I am more compassionate  and empathetic.  I am stronger for having  him to advocate for.  I am a better  person than I would otherwise have been.  I owe this to him.

Author: Tara Kaberry  (http://www.hyperlexia.net/)

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About MakingRoomASD

Father to 3 boys on the autism spectrum.

Posted on July 12, 2011, in Parents and tagged , , . Bookmark the permalink. 2 Comments.

  1. Wow, thanks for giving this a name for me! My six year old must be hyperlexic. He was also diagnosed with straight autism at about 2and a half, at which point he was completely non verbal. He started watching the Baby Einstein dvds, most particularly the Language Nursery, and one day he just started reading all by himself! That , in turn, opened the door to talking and we are now focusing on comprehension. Gives a whole new meaning to the phrase,”the power of the written word!”

  2. I have had a strong belief that my ASD son is hyperlexic since he was less than 2 years old. His obsession with letters, numbers, and logos was incredibly evident early on. The very first time he made a request was to have the Cartoon Network logo labeled for him. He is 3.5, and though he only began speaking 6 months ago, he showed us that he knew all of his letter names and most sounds before he was 2.5. Now he obsesses about them and tells me things like “K is for kangaroo” etc. all of the time. At one point I thought that he would read before he spoke. He amazes me in this way and I really look forward to seeing how he continues to develop. Thank you for sharing. This is the first post that I have seen about hyperlexia.

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