Say It Loud, Autistic And Proud
For many, it’s a condition which evokes pity and even fear. But a campaigning group of activists is determined to change the way we view autism by dealing not with its many downsides, but by focusing on its positives.
The stark black-and-white photograph shows a large, ungainly young woman with a shaven head, wearing shorts and a T-shirt and sitting cross-legged on the floor. Her face is hidden. ‘The young woman in this picture has autism,’ reads the text beside it, ‘a debilitating developmental disorder that affects communication, socialisation and behaviour.’ The next photo shows the helmet she has to use to stop her damaging her head when she bangs it on the wall, her adult-sized nappies and the picture board she has to use, because she can’t speak. ‘Sometimes she screams, and nobody knows what she’s thinking,’ explains the text, ‘but she’s clearly frustrated about her communication disorder.’ More pictures show her lying on the floor staring at blocks of wood or sitting in a chair, unresponsive. ‘If she had a voice, we wonder … What is she thinking? What would she say?’ These are pictures designed to trigger pity and maybe a guilty twinge of revulsion; they might even move you to make a donation. But you’ve been suckered. They form the opening pages of an angry radical website designed to challenge familiar stereotypes. They are a knowing and brutal parody of campaigns to raise money to find a cure for a ‘terrible disorder’.
They are part of a grassroots revolution by a new breed of autism activists who identify with other once-marginalised sections of society like black people and homosexuals, engaged in the same sort of struggle to establish basic rights and to outlaw discrimination. The first Autistic Pride Day march took place in America this summer and the organisers declared their intention was to ‘promote the concept that those identified as autistic are not suffering from a pathological disease any more than those with dark skin are suffering from a form of skin disease’.
This point about the integrity and validity of the autistic state is also hammered home on www.gettingthetruthout.org. After the initial pitiful images, we see the same woman wearing a different T-shirt. It reads: ‘Not being able to speak is not the same as having nothing to say.’ She may not be able to speak, but she is fiercely articulate at the keyboard as she lucidly denounces the way autistic people are belittled in the name of ‘helping’ them: ‘I will not have my life medicalised this way so you can fund the elimination of autistic people from the planet.’ There are more than 500,000 people believed to have some (often undiagnosed) degree of autism in this country, and if the radicals are right we could be treating them in completely the wrong way. If this is the case, there are some major implications for many of our assumptions about education, brain sciences and psychology. Last summer, to pick up some clues about what the autistic pride movement wanted and what it might have to teach us, I went to the strongest manifestation of this new consciousness yet to emerge in the UK.
Called Autscape, it was the first conference in Britain organised by and for people with autism, a process described by the organisers as ‘like herding cats’. The media stereotypes I carried with me were three: the once-cuddly toddler now screaming and unreachable, lost to his distraught parents; Dustin Hoffman’s incompetent but endearing genius calculator in Rainman; and the shamelessly inquisitive, literal-minded adolescent in Mark Haddon’s The Curious Incident of the Dog in the Night-time.
None of them prepared me for the real world of autism; immediately I was struck by the badges they all wore. In place of the impersonal, minimally revealing badges of ‘normal’ conferences, these were raw shouts from the heart. There were three options. Red meant: ‘Do not approach me. I do not wish to socialise with anyone.’ Yellow said: ‘Do not approach unless I have already told you that you may approach me while I am wearing a yellow badge.’ Green declared: ‘I would like to socialise, but I have difficulty in initiating. Please feel free to approach.’ My first response was: what a brilliant idea. Who hasn’t wished for something similar at a party social occasion? ‘I really don’t feel like talking this evening unless you are a Bob Dylan fan/ Chelsea supporter.’ But, more than that, they immediately challenged one of the most pervasive myths: that autistic people lack a ‘theory of mind’, that they have no sense that other people have an interior world. While non-autistic people can predict social behaviour by imagining what is going on in other people’s minds, so the theory goes, those with autism behave as if other people are machines with no inner world. It’s this that makes their social skills so poor. But which shows more awareness of others: ‘Mark Tucker: Marketing’ or ‘Do not approach me’? Shortly afterwards, an even more firmly rooted assumption took a good hammering. Jim Sinclair is one of several legendary American activists, the founder of Autism Network International, and he has been organising a similar event, Autreat, in the States for nearly a decade. He is diagnosed as autistic and uses a wheelchair, however his clarity and intensity makes him a commanding figure. He tackles the hugely sensitive issue of the emotions of parents whose child has been diagnosed with autism. Few of us ‘normals’ could do anything else but mutter inarticulate sounds of consolation. But in discussing it, Jim is far clearer – and sterner.
‘These parents are grieving, but this grief does not stem from the child’s autism,’ he pronounces. ‘It is a grief over the loss of the normal child the parents had hoped and expected to have. But this grief over a fantasised normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult care-takers and who can form very meaningful relationships with those care-takers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both parents and the child.’ It is a point vividly made on www.gettingthetruthout.org. ‘I began to know that my future lay in an institution,’ writes an anonymous author. ‘Or maybe on the streets. Or dead. Because that’s what everyone around me believed would happen if I wasn’t cured. I reacted to this knowledge the way a lot of people do. I began my reign of terror. Other people’s response was to increase the restrictions on my life until I spent most of my time tied down and isolated from not only the outside world but the rest of the institution, too.’ This is not a picture of someone cut off, unable to respond to the words and actions of others – rather she picked up their messages all too clearly. It’s the sense of not being valued, not being respected for who you are, that gets to the heart of the radicals’
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