Other Parental Voices and Autism: Where are They Coming From?

There are many parental voices and the activism for their autistic children has always been diverse and these voices often disagree, as I’ve demonstrated with the differences between McCarthy and Olivas (see this related post). These other voices continue to diverge, with divisive and harsh results. It also helps to know where some of these other parents are coming from and it helps to know that they have contributed to these discussions from a number of distinct perspectives (Langan, 2011, p. 194), since not all of these perspectives are those of celebrity parents. As I’m sharing these voices and analyzing them, I find a little bit of myself in each one, whether this makes me happy or not.

me and Jimmy at about 18 monthsThere are parents who claim “no particular expertise other than their own personal experience as parents” (Langan, 2011, p. 194; what I call the parent as expert); Olivas writes that she was worried that no one would understand her son when he went to preschool, that they wouldn’t be “speaking ‘Gareth-ese’; a mother is the best expert in knowing her child, right?” (p. 49). I know what is and isn’t normal for my own son, but that may be nowhere near what normal is for any other child. Jenny McCarthy wrote books on pregnancy and mothering an infant before her son received his diagnosis, so it would appear to be a logical progression for her to write about her own motherhood, autism included.

There are also parents who are “lay experts having painstakingly acquired expertise, often in areas of science and medicine, through personal research and study (facilitated in recent years by the internet)” (Langan, 2011, p. 194). McCarthy has made claims she got her “Ph.D. in Google” (Barnum Burgess, 2010, p. 118); many parents have bad experiences with professionals that leads them to be less trusting and begin to depend upon their own knowledge of their child as well as their basic instincts (Birmingham, 2012); Olivas writes, “After Gareth is diagnosed with Asperger’s I read everything I can get my hands (p. 9).” And I think the moment I confirmed my son’s diagnosis, I knew I had to confront the huge divide within “autism” (I’m starting to consider this the “IT” principle, my “IT” principle) and Autistic culture.  I knew Autistic people, I knew parents, I knew stories, but now it is at home, in my life, in my son.  I knew I had to do what many other more famous parents have done–I read as much as I can on the subject, but I specifically focus on either perspectives of other accepting parents and/or Autistic self-advocacy perspectives.  Whoosh—that’s the sound of a parachute unfurling, symbolic of the trite phrase “the mind like a parachute functions best when it’s open.” I’d like to think that I keep an open mind, of course.

There are also “parents with particular academic or professional expertise, in some cases in directly relevant disciplines” (Langan, 2011, p. 194).  Even more parents bring insights from even more “remote subjects such as anthropology, sociology or literature” (Langan, 2011, p. 194).  While many parents use their respective disciplines to gain knowledge, this is completely separate and distinct from economic background, class and privilege, and other demographic characteristics.

Finally, there is a category that is very lacking only because there are not a lot of them, but these parents do exist—Autistic parents of Autistic children.  This category of parent adds a whole unexplored dimension of autism parenthood.  There is much more to explore. Stay tuned.

SOURCES:

Barnum Burgess, D. (2011). Closing the refrigerator:  Maternal empowerment and the MySpace Autie Mommies.In M. Moravec (Ed.), Motherhood online (pp. 117-135). Newcasstle upon Tyne, UK:  Cambridge Scholars Publishing.

Birmingham, C. (2010).  Romance and irony, personal and academic: How mothers of children with autism defend goodness and express hope. Narrative Inquiry, 20(2), 225-245.

Langan, M. (2011). Parental voices and controversies in autism. Disability & Society, 26(2), 193-203.

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

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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