Action Research in Partnership with the Autistic Community
Interview with Dora Raymaker
Written by Elesia Ashkenazy
The Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) brings together the academic community and the Autistic community to develop and perform research projects relevant to the needs of adults on the autistic spectrum. AASPIRE's partnership adheres to the principles of Community Based Participatory Research (CBPR or PAR), whereby researchers and community members serve as equal partners throughout the research process. The special skills, expertise, and perspective that each community offers to the project as a whole is the strength of Community Based Participatory Research.
Elesia: Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Whew, what a mouthful! How was AASPIRE created and how did you decide upon a name for your organization?
Dora: In 2006, my friend Christina Nicolaidis and I, plus some other local parents and self-advocates, formed a "journal club" that met in my living room. Our plan was to review autism research and geek out like the science nerds we are.
But we found ourselves instead talking about larger issues with the research. A lot of it wasn't relevant to what the Autistic community cared about, nor was it likely to ultimately improve our lives. Some of it used degrading, dehumanizing, and offensive language. Some of it had questionable validity because the methods didn't take autistic thinking into account. Some of it reinforced false sterotypes.
The idea is that since NTs are taking part in Communication Shutdown, and are at least going to not be saying anything on Twitter and Facebook, that we should take the opportunity to share our experiences and our strengths, and what it's like to be autistic.
The Proposed DSM-V Changes: Is it a Step in the Right Direction?
Written by Corina Becker & Amy Caraballo
Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available onlinefor comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.