I Can’t Ignore It: Autism and Parent Narratives (or the fence I’m stuck on)

Should I do this thing? Should I not? (image of a rainbox picket fence with a butterfly and flowers)

Should I do this thing? Should I not? (image of a rainbox picket fence with a butterfly and flowers)

In comparing autism parent narratives, for example, the cure-centered parent autism narrative, Jenny McCarthy’s Mother Warriors, with a contrary, acceptance-centered autism parent narrative, Bernice Olivas’ What I Mean when I Say Autism: Re-thinking the Roles of Language and Literacy in Autism Discourse, it was more clear to me that there are definitely alignments with opposite models of disability (see below for brief descriptions) within the autism parent divide in our culture today. I am a burgeoning Disability Studies scholar, quite interdisciplinary, and this course of study infuses every subject I learn, every book I read, everything I see on TV.

The medical model focuses on the disability rather than the person; the social model focuses on how disability is caused by society not the person. A cure-centered perspective of autism aligns with the medical model of disability (autistic person is broken and must be fixed/cure), and the acceptance-centered perspective of autism aligns with the social model of disability (autistic child/person is disabled by lack of services, for examples).

I examined these two particular narratives using these models as well as comparing both to my own experiences, and I know that this clash, this divide amongst the autism community needs to be examined in more depth and analyzed before any progress in bridging this gulf can be made. But here are some things that I have discovered.

Jenny McCarthy’s narrative, a popular best-selling book that can easily be found in bookstores and libraries, her second on autism, is classified as a “parenting” book and focuses on curing autism, using biomedical therapies and treatments, and proclaims her son as “recovered” from autism (yes, I think this has recently changed). Bernice Olivas’ narrative, an unpublished master’s thesis, critiques “public discourse“ about autism, using her own experiences as a mother of two autistic sons and as well as her perspective as an English composition instructor, to understand what it may mean to be autistic. She also considers the danger of popular public perceptions of autism (including an examination of perceptions like those of Jenny McCarthy’s) and because of her analysis and those of other acceptance narratives, all of these stories should be more closely examined.

I have also known many autistic people in my life even before I became a mother, so this has given me an advantage when looking at autism from a parent perspective, especially these autism narratives. I do support autistic self-advocacy and the concept of neurodiversity. Neurodiversity is “a concept where neurological differences are to be recognized and respected as any other human variation…. For many autistic people, neurodiversity…view(s)…autism as a variation of human wiring, rather than a disease” (National Symposium on Neurodiversity, 2011). And while I do support neurodiversity and autistic self-advocacy, and it can make my reasoning seem progressive, I also find I need to study (and acknowledge) all perspectives in order to fully understand autism, and I also must admit to myself that I also have a lot in common with many autism parents that are at times divergent from my own views. But I feel conflicted—like I am stuck in a deep rift or valley; it’s like a fence that I am straddling and depending on my comfort level I may sit with my legs on one side or another.  Or some days, I am stuck, immovable, on the fence.

McCarthy, J. (2008). Mother warriors: A nation of parents healing autism against all odds. New York: Dutton.

What is Neurodiversity? [Website].  (2011).  National Symposium on Neurodiversity at Syracuse University.  Available: https://neurodiversitysymposium.wordpress.com/what-is-neurodiversity/

Olivas, B. M. (2012). What I Mean when I Say Autism: Re-thinking the Roles of Language and Literacy in Autism Discourse. Unpublished MA thesis, University of Nebraska. Retrieved from http://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1077&context=englishdiss.

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