No easy answers for autism sufferers
If you think that autism doesn?t affect many children, you should know that autism is more prevalent than childhood cancer and cystic fibrosis combined.
This was the word from Dr. Vincent Strully Jr., executive director of the New England Centre for Children in Southborough, Massachusetts. He was invited to the island recently by the Bermuda Autism Support & Education (BASE) group.
Autism is a neurological disorder that begins in the toddler years and persists throughout adulthood. It affects three crucial areas of development: communication, social interaction, and creative or imaginative play.
?Autism occurs in all races and creeds,? said Dr. Strully. ?It is found everywhere around the world. One in 250 children are somewhere on the autism spectrum.?
The spectrum ranges from very high-functioning children to children with very severe problems. There has been some suggestion lately that autism is linked to childhood vaccinations, but Dr. Strully said this has been conclusively disproved.
?There seems to be a small increase in the prevalence of autism, but no one is clear on why that it is,? said Dr. Strully. ?We do know that it has nothing to do with vaccines. That is absolutely clear.
?There has been a mass of research in multiple countries around the world. You?d have to believe in a conspiracy the likes of which the world has never seen to believe that that many researchers would change their records.?
He said one reason for the increase may be that more children are being diagnosed. Also children who previously would have been classified merely as retarded are now being put on the wide autism spectrum.
?We do know that many studies have shown that early diagnosis combined with effective behavioural intervention, between ten per cent and 40 per cent of children do so well that they lose their diagnosis. We don?t say cure, we say ?lose their diagnosis?.
?That is with trained, experienced, licensed behavioural analysts spending 35 hours a week with the child and supervised by a senior behavioural analyst.?
Unfortunately, in Bermuda behavioural therapists are few and far between, which is one of the reasons The New England Centre is sending one of its professional behavioural therapists, Dr. Rebecca McDonald, to oversee the needs of certain local families with autistic children.
Dr. Strully was in Bermuda to lay the ground work for the Bermuda programme.
?A couple of months ago a Bermuda family visited the New England Centre for Children and asked us if we would set up an intensive programme for their child in Bermuda,? he said. ?So we have organised for a behavioural therapist teacher to come to Bermuda.
?I came down to check on things and see how our families and students were doing and responding to the programme, and so far people are pleased.?
Dr. MacDonald will be in Bermuda at the end of April to give a lecture on improving the social repertoire of children with autistic spectrum disorder. She has been working with autistic children for over 20 years.
?There is growing evidence that the neuroanatomy of the growing brain is very plastic between the ages of two and ten. That is why behavioural intervention can work.
?There is also evidence that other therapies aren?t just harmless, they widen the gap between an autistic child and their peers.
?There is no research evidence to support these other therapies such as floor play or horse therapy do anything. Throughout my career in autism there has always been the cure of the day, spa treatments, diet based treatments, mega vitamins, you name it. There are no easy answers. This is a complex disorder that requires sophisticated treatment that is based on data and research.?
He said that a parent is not going maximise the human potential and future independence of children with autism with a diet cure. ?That is all wishful thinking,? Dr. Strully said.
Dr. Strully became interested in working with children with autism in the 1960s, just at the time when certain terrible theories about autism were being overturned.
?In those days people were still working with Bruno Bettelheim?s absurd claim that this was caused by ?refrigerator moms?,? Dr. Strully said. ?It damaged a generation of mothers unnecessarily.
?It is a neurological disorder. You don?t get it from bad parenting. A lot of things can happen from bad parenting, but autism is not one of them.
?There is an unquestioned genetic component. High numbers of siblings, cousins and twins will have it. There are probably multiple causation in the genetic structure or makeup.?
At the moment, ten to 15 percent of children coming to the New England Centre lose their diagnosis completely, and Dr. Strully and his colleagues hope to enlarge that number dramatically over the next ten years.
He said that while in Bermuda he has met with several families belonging to BASE. They have told him that in Bermuda there is a need for services, prospective intervention and treatment for children with autism.
?There is a need for public education and awareness first and foremost,? said Dr. Strully. ?There is a need for information. We also need to look at the extent of the problem here in Bermuda. My guess is it reflects the extent of the problem everywhere else and the numbers are the same, but we don?t know that for sure.?