In The Politics of Autism, I write that many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism.
My older brother suffered from a severe developmental disability and mental illness. He did not speak until he was 6. Was not toilet trained until after that. This was the 1950s and early '60s, and there was little support for parents with children stricken with autism, schizophrenia and epilepsy. My aunt and uncle urged my parents to institutionalize Andy. A child like that could destroy their marriage and our family.
I wasn’t with my parents when they disdained those warnings, but I watched them calm Andy when he would freak out at the sound of screeching subway wheels or a dog on the street or pigeons at the park or the approach of garbage trucks, which he seemed afraid would swallow him. I watched them indulge his interests in order to draw him out. I watched him watching records spin round and round on the phonograph and I saw him take an LP with him into his bed and sleep next to it. I watched him take pictures with an Instamatic camera, snapping through 24 exposures in a few seconds, and I went with my mother to the drug store where she had them all developed and printed as if the random images might unlock something in Andy’s mind.In the short-lived 1975 comedy The Hot L Baltimore, she played the eccentric mother of a never-seen son with a developmental disability.
Cos Michael has an article at Autism titled "Why We Need Research about Autism and Ageing."
Research into any lifelong condition usually follows the lifespan of individuals with that condition as a way of understanding its trajectory and to provide a point of reference against which the success of interventions can be marked. Yet, with only a few exceptions, autism research has generally excluded autistic people over the age of 40 years (Howlin and Moss, 2012; Povey et al., 2011). We know virtually nothing about what happens to us, autistic people, physically, cognitively, emotionally and socially as we pass through middle and older age.
There is so much to learn. What is the long-term outcome of autism interventions such as selective serotonin reuptake inhibitors (SSRIs) or behavioural interventions? Understanding of the experience of older generations has the potential to affect the support offered to younger people.
What we do know is that there is a much greater risk of premature mortality in autism (Heslop et al., 2013; Hirvikoski et al., 2016); on average, autistic people with additional intellectual disability die 30 years before non-autistic people (Heslop et al., 2013) – with epilepsy identified as the biggest cause of premature death in this group – and those autistic people without an intellectual disability die 12 years earlier than typical adults. We do not know why the risk of premature mortality is so high. Without research into its potential precursors, professionals lack the tools to combat this high death rate. Why invest resources in researching autism interventions in earlier years and then ignore their long-term outcomes or monitor the trajectory of autistic lives to their conclusion?
