Who Speaks for Autism?
Parents need space to discuss openly the impact of our children's autism.
Posted Mar 31, 2017
April is Autism Awareness and Acceptance month. In recent years April has also become Divisiveness-Within-the-Autism-Community month. Cure autism now; stop spending money on research. Pathologize neurological defects; celebrate neurodiversity. Wear a puzzle piece; replace this insulting symbol with a rainbow image. I’ve written before about some of these debates and will continue to weigh in, but today I want to tackle another aspect of the vitriol: Who has the right to be part of the autism community? Should it be restricted to people on the spectrum, as many neurodiversity activists insist, or am I, a parent, allowed to claim membership?
Only autistic people have standing to speak for themselves. NTs (neurotypicals) should not impose their own perceptions and needs on a group whose own voices are the only ones that can be authentic or relevant. I agree. Leaving aside the fact that a non-trivial fraction of autistic people cannot communicate through language, the autism activists are right. I would not want someone else to speak for me, to decide what I want and what I need, to judge whether my life is worth living.
But autism is a family affair. Like it or not, parents are an integral part of their children’s communities, and autism affects parents in profound ways.
Research shows that parents of autistic children earn about 20 percent less, on average, than their peers with typically developing children. Mothers of autistic children have a higher incidence of heart disease than peers who do not experience chronic stress. Spouses spend less time together if they have a child with autism. These are some of the “bad” things. Evidence also suggests that parents gain greater patience, that parenting a child with autism can improve marital communication, and that siblings often develop greater empathy and tolerance than their peers. Families will be—and should be—participants in the conversation.
Putting aside the data-validated issues for a moment, parents also need to discuss their experience in order to become better parents. Mindful parenting requires that we make decisions about what we will embrace, what we will accept, and what we will try to change about our children. We make better decisions when we do so with an awareness of our own prejudices, preferences and ambitions.
Those traits and characteristics we pass on to our children, traits such as race, religion, language, socioeconomic status and geography, are transmitted as part of a vertical identity. These are the parts of a child’s identity that we understand and, unconsciously, most easily embrace. Some children, however, live with a horizontal identity, one that connects them to a group completely alien to their parents’ identity. How do parents rear a child who is so fundamentally different from the person they had anticipated raising? Should they push their children to be more like “everyone else,” e.g., by having the children learn social skills and eye contact in the case of autism, or should they encourage their children to find community in a place where they, the parents, would be the outsiders and where, to their mind, the children’s lives would be more limited?
Andrew Solomon, in his brilliant book Far From the Tree, articulates better than I can why an open conversation about these questions is so vital. Of the many quotable passages from Solomon’s introductory chapter, “Son,” two capture the parenting experience precisely:
If you have a child with a disability, you are forever the parent of a disabled child; it is one of the primary facts about you, fundamental to the way other people perceive and decipher you. Such parents tend to view aberrance as illness until habituation and love enable them to cope with their odd new reality—often by introducing the language of identity. Intimacy with difference fosters accommodation. (p. 6)
There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted—even in imagining another life. (p. 21)
My identity as the parent of a child with special needs does not supersede my daughter Sam’s identity as an autistic person. But her identity is hers to write about if she chooses. I write about my experience, my effort to understand how I impose my own needs and my own identity onto her so that I can, with some clarity, become (I hope) a better parent. Just as it is an effort to make peace with her horizontal identity, it is also, unapologetically, an effort to make peace with myself.
As I write, as I acknowledge the struggles as well as the wonder at my widening perspective, I become more intimate with the “difference that fosters accommodation.” It’s come as a pleasant surprise. I think about Sam’s autism with less ambivalence than I did when she was five or ten or even fifteen. Reminding her of her gifts is no longer an exercise in persuasion for both of our benefits. I believe it. My identity as her parent still requires “space for ambivalence,” but my ambivalence is different now. The pride and love are the same, but I am less imbued with regret. Exhaustion, yes. Regret, no.
The word autism was coined to describe a condition in which a person becomes an “isolated self.” (Though my observations suggest that the isolation is more accurately a failure on the part of NTs to understand how to communicate and interact with their autistic brethren.) The irony of the word is that autism can never be understood in isolation; it is a condition that is both impacted by and impacts upon the community at large.
Solomon, Andrew (2012). Far From the Tree: Parents, Children and the Search for Identity. New York: Scribner.