April is Autism Awareness month. “Light it up blue!” 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. I’ve written before about this debate 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 advocates insist, or am I allowed to claim membership?
Only autistic people have standing to speak for other autists. NTs 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 get it. 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 here is what I want to say to the autists aiming for exclusivity: this blog is not about being autistic; it is about parenting a person with special needs. Like it or not, parents are an integral part of their children’s communities, particularly when their children are minors. Parents will be—and should be—participants in the conversation
As Andrew Solomon explains in his book Far From the Tree, those traits and characteristics we pass on to our children are part of their vertical identity. Often our race, religion, language, socio-economic status and geography are transmitted as part of a vertical identity. To be sure, there are exceptions including adoptees, religious converts, and immigrants, but most of us develop at least some essential parts of our identity from our parents. In turn, we pass on at least some of these parts to our children. These are the parts of their identity that we understand and, without trying, most easily embrace. For some children, most of their identity is gained vertically. In my own household Kelly’s identity still seems to emerge easily from her parents and grandparents. Of course she will develop unique opinions and interests, but for now her intellectual, emotional, and physical identity are easy to recognize in myself or in my husband.
Some children, however, live with a horizontal identity, one that connects them to a group completely alien to their parents’ identity. Solomon introduces this idea by describing his own identity as a gay man whose parents struggled to accept that defining feature. Most people in the LGBTQ community are not raised by parents who belong to their community, so for most of them LGBTQ is a horizontal identity. When Solomon began learning about the Deaf and Hard of Hearing (DHOH) community as part of his job for The New York Times, he became intrigued by the similarities between his own experience and the experience of DHOH people born to hearing parents. Their parents, like his own, struggled with questions about rearing a child they could not understand, a child 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 child learn lip-reading rather than signing, or should they encourage their children to find community in a place where they would be the outsiders and where, to their mind, their child’s life would be more limited?
The book, based on hundreds of interviews and a decade of research, is one of the best books I have ever read. Far From the Tree examines the experience of raising children with a horizontal identity. Chapters include dwarfism, prodigiousness (child prodigies), schizophrenia, transgenderism, and autism, as well as five others. Notably, the book is not about these identities; it is about the experience of, the identity formed by, parenting a child with a horizontal identity.
I recommend Far From the Tree to all parents, not only those whose children have easily identifiable horizontal identities. Good-enough parenting requires all of us to decide what we will embrace, what we will accept, and what we will try to change about our children. Better than good-enough parenting requires that we make these decisions with an awareness of our own prejudices, preferences and ambitions. Reading about parents who faced these choices head-on can provoke all of us to be more thoughtful parents.
Of the many quotable passages from Solomon’s brilliant introductory chapter, “Son,” I include two here to illustrate why a parenting conversation is needed, to explain why blogs such as mine are written.
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 Sam’s identity as an autistic person. But her identity is hers to write about if she chooses. I write about myexperience. It is my experience trying to understand her so that I can be a good parent to her. It is my experience trying to understand how I impose my own needs, my own identity, onto her so that I can, with some clarity, become (I hope) a better parent. As it is an effort make peace with her horizontal identity, it is also, unapologetically, an effort to make peace with myself.
Writing this blog has already changed me. It’s come as a pleasant surprise. I’ll write more about it next week, but the bottom line is that I think about Sam’s autism with less ambivalence than when I began. 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.
My blog is not written to silence or speak or speak on behalf of my child. This blog’s for me.