Saturday, June 11, 2016
I think reactions to this book will vary greatly depending upon readers’ interests and circumstances.
The book positions itself as contributing to “critical autism studies” with four objectives:
1. To challenge the evidence base for biomedical models of autism,
2. To explore the impact of the diagnosis on the lived experience of people so labeled,
3. To offer a conceptual critique of the production, consumption and commodification of autism in the twenty-first century in a global context, and
4. To explore ideas for service provision and practice that move beyond a focus on the diagnosis.
This book is at its strongest when advocating for accommodations and services to be made available without first demanding a medical diagnosis.
Requiring people to “prove” their possession of what can be an “invisible” disability, lets society off the hook for the barriers it imposes against full participation by everyone. It also perpetuates inequality — those who can afford the expense and time of getting an “official” diagnosis are allowed access to concessions, while those who can’t afford to obtain diagnosis through an accepted avenue, must struggle to meet social norms.
I believe the book to be less-successful at examining the impact of an autism “label” on the person who actually bears it. In this aspect of critical autism studies, people who are themselves on the spectrum ought to lead the discussion and — unless I missed something in my reading — I could not find a first-hand perspective among contributions to this book.
If I did miss something, I’d appreciate being told, so I can update this response.
I've read several blogs by people on the spectrum and — far from feeling stigmatized by the label of “autism” — they find their possession of a known diagnosis to be vastly preferable to the labels they would otherwise have been subjected to.
I want to offer my perspective as an “expert by experience.” Given the authors’ acknowledgement of these experts’ belonging in a cross-discipline approach to autism, I believe my personal experience has direct bearing in discussion of this book.
From kindergarten onward, I was a school-wide outcast whose classmates taunted and shunned me. No one offered me a diagnosis of “autism,” but surely the ugly names imposed upon me by my classmates carried far greater stigma.
I hold a similar view of unsolicited criticisms that other adults offered to my parents: I would far rather have been known as “autistic” than be labeled a “brat.”
Only in adulthood, did I receive the label that, quite frankly, liberated me.
I’d known all along that I was “different” from everyone, and this finally provided me with the explanation I needed as to why I felt like an alien on earth.
If you would truly understand the impact of an autism diagnosis, then you have to include my experiences, or the experiences of others like me. We are the ones who live with the “impact” that researchers discuss academically.
Disclosure of Material Connection: I received a review copy of this book from the publisher. The opinion expressed is my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”
Subject Classifications (Partial list, via Dewey Decimal System)
- 006.754-Social Media
- 020-Library and Information Science
- 020.92-Cynthia M. Parkhill (Biographical)
- 023.3-Library Workers
- 025.04-Internet Access
- 027.473-Public Libraries
- 027.663-Libraries and people with disabilities
- 027.8-School Libraries
- 028.52-Children's Literature
- 028.535-Young Adult Literature
- 028.7-Information Literacy
- 158.2-Social Intelligence
- 323.30-People with disabilities--Civil rights
- 658.812-Customer Service
- 659.2-Public Relations
- 686.22-Graphic Design
- 809-Literature--Critical Appraisal