Autism was first described by American psychiatrist Leo Kanner in 1943. In his seminal paper, ‘Autistic Disturbances of Affective Contact’, he described eleven children who presented with common behaviours, particularly a ‘powerful desire for aloneness and sameness.’ Kanner followed these children for several years, noting that all families recorded ‘progress and improvement’ as their children matured. The exception was Vivian S., who was ‘dumped in a school for the feebleminded.’
So what did experts subsequently advise parents of children with autism (at the time regarded as a very rare disorder) to do? To institutionalise them. To render their lives routine and unchanging. To entrench their natural inclination for aloneness and sameness. To create lots of little Rain Mans.
It was only when parents defied the experts, kept their children at home and stimulated them, that we were able to witness the alternative, Temple Grandin being the best known example.
Of course, it’s easy to judge in hindsight. Neuroplasticity, the ability for the brain to change and mould itself in response to experiences, was unheard of then. It wasn’t until the late 1970s that it was recognised that children with autism could learn. We now know that if we work intensively with these children in the peak early period of neuroplasticity — 2-5 years— we can alter their developmental path, sometimes profoundly. It was this early intensive intervention that helped Sam, although at $100,000 it didn’t come cheap.
Several of the more recent intervention models on autism focus on providing an environment that is the opposite of institutionalisation. That is, an environment that is constantly changing, unpredictable and uncertain. It is this type of environment, with appropriate support to ensure the child is not overwhelmed or unsafe, that encourages development. Recent studies have shown the benefit of this approach in the early neuroplastic years.
What wasn’t clear until recently is that neuroplasticity also increases during the teenage years. It is for this reason that adolescence has been described as a ‘second infancy.’ To quote New York Times medical science and health editor Barbara Strauch, the teen brain is ‘still very much a work in progress, a giant construction project. Millions of connections are being hooked up; millions more are swept away. Neurochemicals wash over the teenage brain, giving it a new paint job, a new look, a new chance at life.’
While there is no scientific evidence that providing an unpredictable environment during adolescence is beneficial for autism, from what we know about autism and neuroplasticity, it seems logical. Because of the novel concept of what Sam and I are attempting, leading Australian autism researcher Dr David Trembath is studying and recording the effect on Sam of The Big Adventure. Measurement of Sam’s ‘adaptive’ skills (your ability to deal with day to day situations) and other measures will occur prior to, during and after the big adventure. This may provide a template for further research into a hitherto largely unexplored area of autism; what can benefit the adolescent.