Thursday, January 2, 2014
Navigating the diversity of autistic experience
BY MICHAEL ORSINI AND JOYCE DAVIDSON
We live in a world full of autism.
Full of a multiplicity of experiences that remind us of the diversity of autistic experience. Full of moments that teach us about the boundaries of our own knowledge about this complex condition. Full of contradictions about what it means to be “too autistic” or “not autistic enough.” If you are too autistic, your claim to speak on behalf of other autistic people is called into question. If you are not autistic enough, you are similarly dismissed as unrepresentative of “truly” autistic people.
Such is life among the many worlds of autism.
Assembling a book that could characterize the fullness and diversity of experience with autism without succumbing to the old tropes of fascination and wonderment at the otherness of autism was no small feat indeed. Mainstream advocacy organizations eager to bring autism into the public eye rely heavily on the use of metaphor, likening autism to a puzzle or mystery.
Autism is many things, to be sure. But there is one thing of which we can be confident: it is provocative. The very word commonly strikes fear in parents, sparking a countermovement of autistic people who categorically reject the doomsday scenario of a life with autism. Tearing a page from other disability rights activists, autistic self-advocates position themselves as fully capable of making decisions about their lives and futures, and draw on their own experiences to articulate a vision of a world that is inclusive of autistic people. They worry that the war against autism will devolve into a war against autistic people themselves.
As we outline in this collection, perspectives about autism that focus on deficits, rather than abilities, reinforce particular ways of thinking about what it means to be autistic. A focus on overcoming “deficits” repeats the age-old problems of trying to “fix” people who do not conform to expectations of what is considered normal. It is disheartening to imagine that autistic activists are required to teach others lessons that generations of disability rights activists the world over communicated in the last three or four decades: what constitutes normal behaviour or functioning is always historically and in many other ways contingent. Even the very term ‘disability’ has become normalized with the realization that most of us will be disabled in some shape or form over the course of our lives.
Worlds of Autism features a range of perspectives that seek to resist the imposition of an overarching narrative of life on the autism spectrum. Authors bring their own distinct ways of thinking they seek to share with readers of the volume, and while we hope that many will recognize the “worlds of autism” the book explores from personal experience, the collection is also intended to engage others with little to no previous understanding of this complex yet commonly diagnosed condition.
As Michael Orsini recently stated in an op-ed in the Ottawa Citizen (link here; second article), our knowledge about autism is deeply structured by how the condition is experienced by children, freezing out the possibility that we can have an “adult” conversation about what happens when autistic children develop into autistic adults. Orsini was referring to a local case that made headlines in Ottawa involving a mother who, frustrated with the lack of government support and exhausted from round-the-clock care of her 19-year-old son, Philippe, dropped him off at the office of an agency that deals with people with developmental disabilities. The move was a desperate effort to communicate the urgency of the issues faced by parents like her on a daily basis. But it also revealed “the widening cracks in our systems of care and support for individuals living with disabilities. When governments cut back funding or services to deal with elderly parents or disabled children, they are presuming that families (and typically women in those families) will pick up the slack, as they are often forced to do… (A) focus on the family as the locus of care conveniently deflects our attention from the role of public institutions in providing support for and promoting the welfare of its citizens.”
As Stuart Murray, one of the contributors to this book reminds us, we might know a lot about autism, but we also know very little. We hope this book is another reminder of the limits of our own understanding, and can encourage humility where arrogance once prevailed. We hope to invigorate a conversation about the need to account for and reflect the many varieties of “autistic presence.” As Murray explains: “It is the presence of the person with autism, in whatever form, that stops the condition being only subject to the workings of metaphor and fascination. In addition, the concept of presence reminds us of the systems of function and exchange that are often used to judge the lives of those with disabilities, and the ways in which disabled subjectivities challenge the vocabularies that seek to plot out the ‘meaning’ of such lives… Any engagement with autism as it is portrayed in the contemporary world requires the recognition of such centrality. Paying attention to the consequences of such a move can only mean a better understanding of a condition often willfully misunderstood.”
Worlds of Autism: Across the Spectrum of Neurological Difference.
-Stuart Murray. 2008. “On autistic presence.” Journal of Literary Disability, Vol. 2, No. 1, pp. 1-10.
-Michael Orsini. 2013. “Much study, little understanding of autism.” Ottawa Citizen, May 3, 2013.