Autism and my child’s right to be understood …

Our story is one many families with autistic children will know well – the worry, the confusion, the desperation and the lack of understanding from society. Our eight year old son Fares, the eldest of our three children, is autistic.

In the past, I used to associate autism with the movie “Rain Man.” I didn’t really know much about it, until the early 90s, when I met the adorable 5-year-old son of a friend of mine in London. He was a bright, intelligent boy who was suffering from a mild form of autism called Asperger syndrome, and who sensitized me the fact that every child regardless of his health conditions is unique in his own way.
Autistic children are still hardly understood in Syria; in fact, many people don’t even know what autism is. Autism is a neuro-developmental disorder that affects the function of the brain and makes it difficult for the child to communicate with others and to relate to the outside world. It is as if the child is trapped within himself, unable to interact with others. First discovered in the 1930s, autism was considered a rare disorder. Only ten years ago one in every 10,000 children was diagnosed with an autistic spectrum disorder. In the last few years there has been clearly a sudden increase in autistic children worldwide, and today the latest figures show that it may be affecting as many as one in every 150 children.

Researchers and scientists have very little information on autism. There are a lot of speculations about its cause. Some believe that environmental conditions are to blame; others say that more children are simply getting correct diagnoses, adding to the prevalence of cases; another belief is that the cause of autism may be related to genetics, either one or both parents have to be a carrier of the gene. Recently there have been surveys about the increase of autism and the use of Thimerosal in childhood vaccines. (Thimerosal is an inorganic mercury compound that is used as a preservative in some vaccines to prevent bacterial and fungal contamination). Studies have shown that some developing countries that have been experiencing a sudden explosion in autism rates have been receiving vaccines with Thimerosal. The World Health Organization (WHO) continues to insist that Thimerosal is safe, and that there is currently not enough evidence that supports this thesis. One thing is for sure, however: as the number of Thimerosal-based vaccines increased, the rate of autism worldwide among children exploded. Russia was the first country to react; banning Thimerosal from children’s vaccines, and Denmark, Austria, Japan, Great Britain and all the Scandinavian countries have since followed suit.
Our son Fares was a beautiful and healthy boy when he was born and the first two weeks of his life he was a peacefully sleeping baby. On his 18th day, we took him for his regular check up at the pediatrician’s clinic, were he received a hepatitis B shot. That night directly after receiving the shot he displayed strange symptoms. He was very agitated, feisty, making strange noises and his tiny body was convulsing. My husband and I were confused and I remember my mother saying that she had never witnessed such a strange reaction before. Is it just a coincidence, then, that Fares’ life changed that night after he received the standard hepatitis B shot, a shot known to contain traces of Thimerosal? I am not implying that all children that receive vaccines preserved with Thimerosal develop autism, but I believe that certain kids have a higher susceptibility. Different people have different metabolisms and I believe that in some infants where certain genetic anomalies exists the shots are a contributing factor triggering autism. I also believe that the Syrian government has to follow the above countries’ lead and ban Thimerosal-preserved vaccines in Syria until the cause for autism is found.

Fares walked at 11 month, and he began to speak a few words. He laughed and cried as a normal baby would and showed a lot of affection towards others. He enjoyed being kissed and hugged. By the time he was two years old we noticed that he was not acting like other children his age. He did not seem to be developing speech as he should have. Most of the time he was extremely restless. We also noticed that he would sometimes walk on his toes, and that he constantly flapped his hands. Another strange habit was to look for a piece of string or cord, which he would twirl around endlessly. Fares was also suddenly exhibiting strange eating habits, refusing most kinds of food.

We were completely puzzled by his sudden change, but despite seeing countless doctors, we couldn’t get the problem diagnosed. It was frustrating to hear different opinions from all these so called professional experts, and discover that none of them was able to give us the right diagnoses. Somewhere deep within me, however, I felt that something was wrong. Finally, we moved to Beirut where he was placed for one month under supervision and evaluation by an efficient and professional child psychologist. At the end of the evaluation she told us that her diagnosis was that Fares had autistic tendencies and Attention Deficit Hyperactive Disorder. (The symptoms of AD/HD are the inability to sustain focused attention, impulsivity and hyperactivity). The pediatric department of the American Hospital of Beirut confirmed the diagnosis, and we were advised to put him in a regular school with a full inclusion program as this is the most effective way of therapy.

We started with the treatment in Beirut, where Fares would every day for two years after nursery attend an Intensive Behavioral Intervention Program. When we returned to Syria, it was a complete struggle to find an appropriate school for Fares in Damascus. From experience I know that parents of autistic children face incredible obstacles in their efforts to give their children the education denied by most schools. You will hardly find a school that is presently able to offer an inclusive educational program for children with special needs. I could name a number of well-known private schools in Syria that claim they do, but when it comes to reality, all of them are ill-equipped and absolutely not in a position to provide the necessary resources and care. Often none of the staff or teachers have any idea what to do and how to communicate with autistic children and parents are asked to pay an unreasonable amount of money, only to find their children being left with no support. Public schools are even worse. Fares’ speech therapist who has worked in a number of public schools in Syria has witnessed many sad cases of autistic children who have been left in the school’s courtyard on their own (often for hours, regardless of the weather-conditions) without receiving any kind of help, simply because their behavior was misunderstood and considered disruptive. I ask myself, “is it fair to make these vulnerable children suffer in silence and pay the price for a deficit-based approach of our educational system, and should not all children, regardless of their backgrounds and disabilities, be able to access appropriate support and teaching methods that meet their individual needs?”

The integration of children with autism in mainstream schools should be one of the main agendas for our educational system. Centers with qualified special needs educators have to be formed that help schools to develop capacity to provide appropriate care and support to special needs children. Mainstream schools need help in constructing a model program and school teachers need to be prepared and fully trained to effectively work with autistic children.
There is currently no cure for autism, but with early intervention it can be treated. We have worked hard on Fares and he has reached so many milestones since his diagnosis. All children, regardless of their disability, are capable of learning and as renowned clinical psychologist Dr. Ole Ivar Lovaas says, “If a child cannot learn in the way we teach, then we must teach in a way the child can learn.”