Cos Michael is an autism consultant and trainer. She contributes to this Autistica blog series examining what we can learn from history in order to guide future autism research.
The historic sweep of Steve Silberman’s book, Neurotribes illustrates how autism was identified and how perceptions of it changed, throughout the 20th century. The backdrop is of wars where we see how fear of the different infected entire nations, leading to devastation. Wars now darken the 21st century.
Autism is characterised by differences. At present there is much debate about the language of autism and for a reason. Language gives shape to thought and the way autism is described has an impact on the way society responds to autistic people. When I read Neurotribes, there is a warning in the echoes from the past.
Think about the way autism is being described in today’s literature. Articles are written about the burden of autism and hysteria is whipped up about the potential cost of autism crippling economies. As if to validate these fears, the descriptors of autism are overwhelmingly negative. Disease, disorder, impairment, challenge – in nearly every context, autism is pathologized.
It concerns me whether people understand autism as intrinsic to autistic people, or if they regard it as an adjunct? This makes a huge difference to the valuation of autism. If people “have” autism, the implication is that they can “not have” autism. So if we can “cure” the autism, we can keep the people. However, if people “are autistic”, what happens to them if we “cure” autism?
There are geneticists being funded to identify the genetic markers of autism. Are they aiming to ameliorate autistic difficulties or to find a “cure”? Once it is out there, the scientists will lose control over how the technology is used, so whose agenda do they serve? Do they know?
The ethics of medicine has been an issue for thousands of years. The Hyppocratic oath contains a line that should be plastered over the doorway to every clinical research establishment,
“If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.”
Think about difference in this context: if one in a hundred people is autistic, it is a tiny minority, but is it a tiny minority if we scale up to one hundredth of all humanity? How “different” are autistic people? We are 100th of the world population. There are millions of us. We contribute to the societies we live in at every level. Some of us need various degrees of support and a small minority need total support, as do a small minority of people with other differences, physical or mental. We are individuals, contributors, not burdens. We have talents, abilities, preferences and opinions.
So what we should learn from history is that we need to monitor those who use negative language because it creates prejudice. Nobody ought to be marginalised for an aspect of their human condition. For their race, their age, their religion, their mental or physical makeup.
If you want to find out about autism, ask autistic people. We are not “other”, we are one of us and we can speak for ourselves. If you want to build a career as an autism researcher, please make it your aim to improve the lives of autistic people and those around us. Provide a lesson to pass on through history.
Cos Michael, autism consultant and trainer, specialising in adulthood and ageing.
More in the series:
The Lessons of Autism History: by Neurotribes author Steve Silberman
The Lessons of Autism History: by parent and GP Mike Fitzpatrick
The Lessons of Autism History: by autism researcher Michelle Dawson