I called my previous posting “So: Mourn For Us?” That
posting was concerned with the hardships autistic people supposedly face – how they
supposedly go through life, like their families, bereft of hope. But note that
I included a question mark at the end. This was to signal that it isn’t
necessary to mourn for people because they are autistic.
For this current posting’s title, I have added a key extra word from Jim Sinclair, the source of the quotation: “don’t.” What Jim Sinclair said, in his address from 1993, was: DON’T MOURN FOR US. Reaching out to non-autistic people, Jim asked that people don’t try to take away someone’s autism – it’s part of who we are: “Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism.”[1]
What Jim sets out here is a pole apart from precisely what many non-autistic people try to do, namely to look for a way to get back a child. Steve Silberman explores such moves in his Neurotribes by looking at some of the organisations that have been set up to try to recover autistic children, or to cure someone of autism. The names of some of the organisations alone are telling: “Defeat Autism Now” is one. Another is “Cure Autism Now.”[2] Occasionally, over the years, comments to my blog have been from organisations akin to some of these telling me about some supplement which, those promoting it tell me, has properties that can cure people of their autism. But, as Jim Sinclair was saying a quarter of a century ago, “Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.”
From this perspective, what can it mean to look for a cure? Taking this to a logical extension, from Jim’s perspective, what would you be left with? As Jim continues: “It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.” Another way to see autism is as a mode of existence: a ‘world’ as one autistic person puts it. This is Sue Rubin, as expressed in the title of her documentary film.
This is a world where
people think, act and behave differently from non-autistic people. What tends
to happen is this – the focus is put on how a non-autistic person strives to
understand, to reach, the non-autistic person. But Jim, like Sue a decade on, turns it round to the
autistic person’s experience. Where an autistic person manages to find a way to
communicate with non-autistic people, and to function in non-autistic society,
they are, as Jim puts it, “operating in
alien territory, making contact with alien beings.”
There is an excellent fit here with how Temple Grandin, as an autistic person, seeks to explain what it is like for her to deal with interactions with non-autistic people. As she has put it, she is “an anthropologist on Mars.” [3] Similarly, R. Young, quoted in Alis Rowe’s Asperger’s and Me, writes about “Planet Asperger…where everything seems the same as earth, but nothing actually is.[4] And as Alis herself says: “People with AS often feel like observers. Many feel they are here to simply study the world but never be a part of it.”[5]
For this current posting’s title, I have added a key extra word from Jim Sinclair, the source of the quotation: “don’t.” What Jim Sinclair said, in his address from 1993, was: DON’T MOURN FOR US. Reaching out to non-autistic people, Jim asked that people don’t try to take away someone’s autism – it’s part of who we are: “Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism.”[1]
What Jim sets out here is a pole apart from precisely what many non-autistic people try to do, namely to look for a way to get back a child. Steve Silberman explores such moves in his Neurotribes by looking at some of the organisations that have been set up to try to recover autistic children, or to cure someone of autism. The names of some of the organisations alone are telling: “Defeat Autism Now” is one. Another is “Cure Autism Now.”[2] Occasionally, over the years, comments to my blog have been from organisations akin to some of these telling me about some supplement which, those promoting it tell me, has properties that can cure people of their autism. But, as Jim Sinclair was saying a quarter of a century ago, “Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.”
From this perspective, what can it mean to look for a cure? Taking this to a logical extension, from Jim’s perspective, what would you be left with? As Jim continues: “It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.” Another way to see autism is as a mode of existence: a ‘world’ as one autistic person puts it. This is Sue Rubin, as expressed in the title of her documentary film.
 |
| Temple Grandin delivering 2010 TED Talk. Details here |
 |
| Alis Rowe: The Girl with the Curly Hair. Details here |
There is an excellent fit here with how Temple Grandin, as an autistic person, seeks to explain what it is like for her to deal with interactions with non-autistic people. As she has put it, she is “an anthropologist on Mars.” [3] Similarly, R. Young, quoted in Alis Rowe’s Asperger’s and Me, writes about “Planet Asperger…where everything seems the same as earth, but nothing actually is.[4] And as Alis herself says: “People with AS often feel like observers. Many feel they are here to simply study the world but never be a part of it.”[5]
In the next posting, I shall
look at what implications there can be in all this for my project and what its
goals are. Should I be aiming to help autistic children circumvent a strange
world? Or, should the project be about the autistic
world and how this world is experienced, and maybe how non-autistic people can
discover it? This opens up another question, namely what IS an autistic world like?
More soon…
[1] Jim Sinclair, “Don’t Mourn for Us,”
Autism Network International (ANI) website:
http://www.autreat.com/dont_mourn.html (accessed July 21, 2019; originally
published in Our Voice
1.3, 1993).
[2]
On
the quest to cure autism, with the launch of organisations including “Defeat
Autism Now!” and “Cure Autism Now”, see
Silberman, Neurotribes: The Legacy of Autism, 261–237 (Full details of Steve’s book in previous posting).
[3] See e.g. Oliver Sacks, An Anthropologist on Mars, London:
Picador, 1995; Silberman, Neurotribes: The
Legacy of Autism; Temple
Grandin and Richard Panek, The Autistic
Brain: Thinking Across the Spectrum, Boston–New York: Houghton Mifflin Harcourt, 2013;
Thomas G. West, Seeing What Others Cannot
See: The Hidden Advantages of Visual Thinkers and Differently Wired Brains,
Amherst: Prometheus, 2017, esp. 69–90.
[4] The
Girl with the Curly Hair – Asperger’s and Me, London: Lonely Mind 2013: 89, referencing R. Young, Asperger Syndrome Pocketbook. Hampshire
Teachers; Pocketbooks, 8.
[5] Asperger’s
and Me 117.
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