29 Apr 2017

"We Didn't Have Autism In My Day"

If you browse articles on autism, or follow any social media discussion on it, someone will show up and tell you that autism is new. This someone will usually be a 50+ bloke, who thinks it's all a load of old codswallop; poor parenting, too many chemicals in foods, vaccinations, labelling every kid who's a bit odd. Autism is new. Autism is a new invention that doesn't really exist, except in the Rain Man savant stereotype.

Autism isn't new. Autistic behaviours have been described in individuals going back at least 500 years. Just as epileptics were considered possessed by the devil, autistic people were considered soulless demons. Until relatively recently, disability was widely categorised as deaf, blind, crippled or imbecile/insane/feeble minded. Autistic people were broadly defined as mentally subnormal, where it obviously disabled them, and weird or criminally insane where it was less disabling. It was formally discovered and named almost simultaneously by Hans Asperger and Leo Kanner separately in 1938 (hence the confusion between Aspergers syndrome and Autism - they are the same disorder, described slightly differently by two people on different continents at the same time). Autism was initially thought to be the result of distant parenting, and was classified as "infant schizophrenia" until the 1980s. This idea of autism being the fault of parents, or a psychiatric disorder, still resonates in public discourse. But autism is not a psychiatric disorder, although it is usually grouped as a mental health condition - it is a pervasive developmental delay, pervasive because the person cannot 'grow out' of it. One significant change in the last twenty years has been a fine-tuning of diagnostic methods, which has enabled more subtle cases to be differentiated, diagnosed and helped. I know several adults who have discovered, sometimes to their great dismay, that they score highly on autistic diagnostic tests - the stereotype of the mute, asocial autistic person is not really accurate now. 

I read a comment from a man on twitter who said that there was nobody autistic at his school, and he was 37. I am five years younger than him and I went to a large primary school, and a large secondary school. There was at least four autistic people in my primary school yeargroup and many more in secondary school. Once you have an autistic person in your life, you begin to recognise the signs in others, but when you don't know the signs, you just think they're weird. The autistic people in this man's school would be the ones who were bullied, the ones nobody hung around with because they were strange or said the wrong things, the ones who never went to birthday parties, the ones who were regularly out of class, the ones who turned up for two terms and then disappeared. Jimmy's classmates know and broadly accept that he's different, but they don't necessarily know he's autistic - autism isn't a common word in an 8 year old's vocabulary. Autistic children are supported more obviously in mainstream schooling now, and there is far more help available if you qualify for it. 

But formerly, the only real option for autistic children was residential institutions. 

For those of us born in the last forty-ish years, institutions are a distant spectre. Huge Victorian asylums still stand in most towns, often converted into flats or hospitals, the residents broadly unaware of their history. But for our ancestors, institutions were a normal, if feared, part of life. If you had an obviously disabled child, you were encouraged to send it to an asylum as quickly as possible. Autism isn't usually apparent until toddlerhood at the earliest, but children were still sent away to residential hospitals. Parents were not encouraged to visit - a relative of mine was put into an asylum in early childhood because she had Downs syndrome, and lived forty miles from her parents. Her mother visited once a week until her death aged 13, in 1952. This is recent history. In the 1980s, the people who had lived in institutions for most of their lives began to be released as part of the Care in the Community Act. Many ended up in sheltered housing, having never been taught the skills to live independently. The issue with living in an institution is that you become institutionalised. Ironically, this rather suits autistic people, although it has the potential for horrific abuse. 
If Jimmy, my beloved eldest boy, had been born in 1949 instead of 2009, he would have been institutionalised by now. He would be living on the site of the old District hospital, in the vast Victorian workhouse and asylum complex that has been completely redeveloped. He would be considered dangerous and insane. 

Autism is not a new disease, and the reason older people claim they didn't have it in their day is because it was hidden away, concealed behind huge walls and gates, in stigmatic buildings, buried under sedation and restraint. There should be no pride in claiming autism wasn't around in the good old days - it shows how invisible and suppressed disability was, and how uncomfortable it makes some people that it's now 'mainstream'. 

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