Sunday, June 10, 2007

A is for . . .

autism
adoption
alternatives
altruism
alacrity
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.

8 comments:

Maddy said...

I have my copy [still virgin] as well as a whole heap of the other books that have recently appeared on my nightstand to gather dust, but I'm going to pack them and I hope to read them soon - isn't that what holidays are all about?
Cheers

Anonymous said...

It is an amazing book. I read and reviewed it last week on my site. You'll be well rewarded in the last 100 pages (tho my guess is that you've finished it by now!)

Spartina alterniflora said...

Interesting that you've brought up psychoanalysis--I'm very curious to read your thoughts about it. I've been thinking a lot about psychoanalytic theory and fairy tales, lately, particularly about Bettelheim and his influence on the way we discuss fairy tales and take it sort of for granted that they are "good" for children.

I thought it was notable when Savarese talked about stepping away somewhat from the psychoanalytic framework (sorry if that seems incorrect, it's my very loose summarizing of what he wrote) when he found that a particular therapist was perhaps over-encouraging DJ to talk about his fears of abandonment. I found it striking that Saverese suggests that, for autistic kids, particularly with PTST, it may not always be beneficial to encourage exploring in depth such fears.

Anyway, I look forward to reading you post about psychoanalytic theory.

Kim Rossi Stagliano said...

Hi! So wonderful to meet you on Thursday. I bought this book too. I will start it soon. I'm sure I'll blog it, once I dry my eyes, right?

Annie D said...

WOW ! this book looks amazing ! I can't wait to read it ! Going to add it to amazon wish list right now and just as soon as I have the money and making that purchase , along with a few other books :O)

thanks for sharing with us ! my son is not autistic, but is 4 years old and unable to speak (though he is not deaf).. he uses sign. he has sensory issues.. so while he is not autistic, he does attend a special preschool with children who are, and I sympahize much with autism familes.. because I know about the communication issues, the sensory issues, the IEP issues... etc, firsthand.

again thanks !!

i heard about this book that also seems amazing, though it isnt about autism, called "Crashing Through" Go check it out on amazon.. it might interest you.

annie

Anonymous said...

I'm reading the book. It is as powerful as I'd expected.

And here's a strange coincidence - Ralph AND his son DJ just signed with the same literary agency I'm with! I hope to meet them as soon as they come to NY.

kristina said...

It's intriguing to me how Ralph seeks to bring psychoanalysis back into discussions about autism---not on the parents, but in regard to the child. It's an intense read, for sure.

Anonymous said...

i've begun reading my copy and i love it. i had it on my nightstand for a week but as soon as i heard Savarese's interview on NPR (during which I cried and cried and cried), i had to start the book immediately. very powerful. it makes me want to become an RDI consultant and bring the program to the kids in foster care. hell, it makes me want to adopt a whole slew of kids from foster care.