Autism’s Edges

A is for...

A is for…
analysis and
all night . . .

when I stayed up reading Ralph James Savarese’s A-list account of his adoption of DJ, a six-year-old boy abandoned by his birth parents because of his classic autism and their own emotional impairments, then cast adrift in the rough, unforgiving seas of the American foster care system.

At four in the morning, just shy of three-quarters of the way through the 400-plus-page account, I reached a point that I sometimes encounter in reading — I wanted to finish, get to the end, know what would happen next, and I didn’t want to finish, get to the end, and not be able to stay wrapped inside this astounding narrative where the boundaries between parenting, activism, and advocacy are fluid if not seamless, an account that certainly complicates some of the recent discussions of the role of parents in the autistic rights movement.

First, for those who’ve not yet picked up their own copy of Reasonable People: A Memoir of Autism and Adoption (and I urge you to do so right now), a brief plot summary (spoiler alert: skip this paragraph and the next if you don’t want to have the narrative trajectory derailed): Savarese and his wife Emily, an autism inclusion advocate and expert, met DJ through her work. DJ had been abandoned by his birth father, and neglected and abused by his alcoholic birth mother. He’d been sodomized and further abused in an overcrowded fostercare home where an adolescent boy, also a victim of sexual abuse, had tried to work through his own trauma by violating the then-speechless-thus-perfect-victim, DJ,

The story retraces the Savareses’ journey through the twisted legal terrain of fostercare adoption, and into the pioneering territory of full-inclusion for DJ in a public school, in the least-restrictive educational setting, the contested terrain of facilitated communication, and the heartwrenching reunions of DJ and his birth sister — the child who had taken care of her little brother when addiction had rendered their birth mother incapable of mother-work. Through uncompromising love and commitment to DJ and his personhood, the Savareses create a home that is safe enough for DJ to reveal — in his own typed messages — the magnitude of the abuse he’d suffered in fostercare. I did skip ahead to read the last chapter, written by DJ himself, so I know that there is an amazing conclusion, if not a saccharin-laced smiley-faced happy ending.

While there is much to love in this book and this family (pictured here), and much to discuss about it, what appeals so profoundly to me in the story is Savarese’s unwillingness to throw out the baby with the bathwater, whether that baby is his son, a commitment to inclusion and the principle of the least restrictive setting, or the emancipatory possibilities of psychoanalysis — a theory that has a well-deserved bad reputation in the autism world, saddled as it has been with the legacy of mother-blaming encapsulated in Bettelheim’s “refrigerator mother” hypothesis.

I have been grappling with this very theoretical issue in my own more work, wondering what to do with psychoanalysis, and wondering what atypical language acquistion means for the development of structures like the unconscious and desire. Like Savarese, I came of age intellectually in the cultural studies milieu of the late 1980s and 90s and was steeped in a heady brew of psychoanalytic theory, dialectical materialism, and feminism.

Autism parenting has challenged each of these frameworks, but none more aggressively than psychoanalytic theory. I’d backburnered my questions about this until recently, when my psychoanalytic reading group had asked me to present a paper about autism and psychoanalysis at a regional conference in February. I had agreed, and then, still conflicted about the role of psychoanalysis in autism’s misrepresentation, I was sick the weekend of the conference and wound up not going. Conflict can do that to any body.

Savarese’s narrative, healing for himself and his family, has been similarly healing for me. With an easier integration of my lived experience and theoretical models, I hope to be able to present that paper this summer at a national conference — thanks to Savarese and his intellectual and emotional integrity.

And more on Reasonable People in the days to come . . . 100 or so enveloping pages to go.