Saturday, 03 September 2011
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.