My Green Family. ramblings of one family's journey to green living

There is a huge controversy raging about autism: about why it occurs and how to treat it. I didn’t truly understand this debate until I read Changing the Course of Autism by Dr. Bryan Jepson (most of the information I’m going to be talking about in this post is from that book). Of course I’d heard the whole vaccines causing autism debate but there is so much more to that discussion than I thought. I feel to fully understand the state of the autism controversy and how it relates to our family going green it’s necessary to understand the history and origins of the diagnosis and treatment of autism. So I’m going to start off by doing an overview of the history of autism.

Autism was first described in 1943 by Leo Kanner, a child psychiatrist at John’s Hopkins University. Because it was so rare autism was placed in the same category as other strange and unusual psychiatric illnesses. Later on in the 1950’s a philosopher (yes you read that right, he wasn’t even a psychiatrist) named Dr. Bettleheim came along and said that he believed children were not born with autism but sensed from an early age that their mothers’ were withholding love from them. He said that these “refrigerator mothers”, as he called them, felt a need to defend themselves from their children out of a sense of insecurity. In response, the children withdrew from society and regressed into autistic behaviours. Dr. Bettleheim believed the only way to help these children was to remove them from their mothers and place them in an institution. Shockingly, this guy was the autism expert for most of the ‘50s and ‘60s. Can you imagine how devastating this would be as a parent to be told your child not only has a disability but you caused it because you didn’t love them? I continue to be shocked by this. So even at the very beginning of trying to understand this disease there was controvercy.

In 1964 Dr. Bernard Rimland who had a Ph.D. in experimental psychology and was also a father of a child with autism thankfully challenged Bettleheim’s theories. He suggested the root causes of autism were in biology and not psychology. He theorized that autism was a disease resulting from neurological and heritable factors. In 1967 he founded the Autism Research Institute. Today the ARI continues to conduct research about biologically based treatments for children with autism.

Than in 1987 Ivar Lovaas Ph.D., a clinical psychologist, published the first study showing that children with autism had recovered functionally when given intensive educational and behavioural intervention. This treatment is known as applied behavioural analysis (ABA) which is the foundation of intensive behavioural intervention (IBI) therapy. This therapy modifies behaviour through positive reinforcement and breaks tasks down into very small simple parts. More studies confirmed these findings and this started a move toward early education intervention for children with autism.

Today we can see two schools of thought emerging about the treatment of autism. One sees autism as a biological disease that can be treated by augmenting biological factors like diet and nutrition. While the other sees autism as a psychological disorder that can only be treated by behavioural modification and in some cases pharmaceuticals to suppress undesirable behaviours.

In the 70s many incident rate studies where conducted to understand the role genetics played in the cause of this disease. Twin studies where conducted comparing rates of autism in identical and fraternal twins. Incident rate studies where also conducted for siblings of those afflicted with autism. In theory, if genetics was solely responsible for autism than the incidence of autism in identical twins should be 100%. So if one identical twin had autism the other twin would always also have autism. The results of these studies showed that the rates of developing the disease where higher in siblings and twins of those with autism but not 100% in identical twins as would be expected if it was a purely genetic disease. Therefore this indicates that there is some sort of genetic component at work but it cannot be the only factor. In addition to this evidence against genetics being the only causative factor in autism, there is no such thing as a genetic epidemic and autism is now at epidemic proportions.

Before 1980 doctors rarely encountered autism. Autism, if mentioned at all in med school, was discussed as a rare disorder, and many general practitioners went through their entire career without encountering it. In studies done to estimate autism’s prevalence prior to 1980 the rate was estimated to be 2-5 per 10,000 people. Today in 2009 the rate is a staggering 1 in 150, an increase between 1200-3200%!

So what gives? Why the explosion of this disease in the last 20 years? Could it be some cases of autism where previously diagnosed as something else like mental retardation? Nope. Studies have been done to answer this question and it’s not a result of diagnostic substitution. What about changes in the diagnostic criteria of autism? Remember in my last post I linked to the Diagnostic and Statistical Manual of Mental Disorders. This is the manual that doctors use to diagnose mental disorders; it’s like a checklist of symptoms for different disorders. Right now they are on the fourth edition which was published in 1994, the third edition was published in 1980 which was revised in 1987. Many scientists wondered if the criteria had changed from one edition to the other accounting for the increase in autism rates. The criteria where narrowed in the fourth edition, so we would expect to see a drop in autism diagnosis, not such a huge explosion. We would also expect to see what’s called a “hidden horde”, a large group of undiagnosed adults with autism. So far no high quality studies have been done to prove this theory. And as Dr. Jepson suggests, if there where such a horde how bad would the medical community look for allowing a huge number of disabled individuals to go undiagnosed and untreated?

As you can see as much as there is a debate over how to treat autism there is also much debate as to why it’s occurring.

In part two of this series I’m going to expand on the history of autism and discuss current beliefs about the disease and how this all relates to our green movement.