I just finished reading Ralph Savarese's
Reasonable People, and I can't remember the last time I read a book that made me think about so many difficult things all at once. The book is told memoir-style, telling the story of what it has been like thus far for Savarese and his wife, Emily, an autism inclusion expert, to raise their adopted son, DJ. However, though the main tale is that of life with DJ, Savarese uses this as a platform for the discussion of many larger societal issues that affect us all, whether we know someone with autism or not, (though clearly pretty much anyone reading this blog does.)
The first issue, or rather, the first set of issues, he talks about are those of poverty, foster care, and adoption. He discusses in detail his own initial desire to not have children, because doing so would limit his ability to take part in the wider world and would not allow him to devote his time to altruistic causes he believed in. When they first met DJ, he and his wife were devoted to getting DJ and his sister back into their biological mother's care. Throughout the narration of their prolonged relationship with Rhonda, in which they helped her both financially and in the court system, Savarese also discusses many of the thoughts he had about the cyclic nature of poverty and his desire to see it truly confronted as a societal problem in which everyone needs to take an interest, because it is everyone's responsibility as a whole. He continued this discussion in his description of the foster care system, in which many of the families providing foster care are poor families doing it for the childcare stipend. He notes that this draws an inadvertent, sometimes antagonistic divide, often along class lines, between prospective adoptive families and foster care families. His stark look at the foster care and state adoption systems reveal a need for change, but also a realistic look at how overtaxed the systems are, being a essentially stopgap measure for addressing much larger societal problems.
Once Savarese and his wife succeed in adopting DJ, they are determined to get him into an inclusive educational setting. Up to that point, he had attended a closed center school, in which he had made little progress. Thanks to Emily's own inclusion expertise and both of the determination of them both to prevail over the school system, they succeeded, and DJ began on the road to literacy and learning. The arguments presented between Emily and the schools, both the center school and the public elementary school, are classic, and powerful, examples of the argument over inclusion. As one can tell from the chapter at the end of the book, though, DJ is most definitely a proponent of inclusive environments, which he makes clear in a letter addressed to his old preschool teachers.
One of the most important things DJ gains from his new intensive educational experiences is literacy. As it turns out, literacy opens many avenues of communication for DJ, because he says he didn't learn to decode spoken language until he learned to read. Their efforts towards literacy also led to an inadvertent discovery of facilitated communication (FC), and Savarese spends some time defending the method in its legitimate form, discussing the controversy that surrounded it in the early '90s, but presenting powerful evidence of research done since then proving its efficacy when used appropriately. He also mentions numerous successful users of FC, who now lead quite rich lives and are able to advocate for themselves. DJ looks well on the way to becoming one of these vocal, or should we say, typing advocates. Indeed, DJ, as well as his parents, have discovered the world of disability/identity politics, and these play a strong role in their story.
However, one of the things that makes this book so unique amongst the available books on autism, aside from its focus on adoption, is its exploration of the relationship between trauma and autism. DJ was severely physically and sexually abused by another child in foster care, and it was only after he learned to communicate that he seemed able to assimilate and understand this part of his past. This led to many problems with anxiety, anger, confusion, and separation. Dealing with this through therapy was much more complicated when combined with autism and communicating via FC, and Savarese describes many of the issues they and their therapists faced in dealing with something relatively unknown. Many of the standard therapy techniques became problems in and of themselves, as DJ began to perseverate on his past trauma, rather than moving through the memories to the other side. In addition, the more anxious and upset he became, the more violent and less communicative he would become. The combination of trauma, in this case PTSD, and autism is not a field that has been widely explored, and this book can be considered a call for more attention and research. Savarese points out that the nonverbal in our population are far more likely to suffer abuse, and this problem is probably much more widespread than we would like to think.
Though Savarese also writes movingly about the meaning of family, particularly in relation to the bond between DJ and his biological sister; dealing with loss in many forms; the relationship between poetry and DJ's unique perceptions of the world; and numerous other things, I fear that I have run on for too long already, so I'll simply end here with a recommendation that everyone read this book. Truly, it is a moving, fascinating, and of course remarkably well-written book, and I am sad to have had to condense it this much.
(As an interesting exercise, people might like to compare this book to Portia Iverson's
Strange Son, previously reviewed
here, which has its own particular view of nonverbal autism and another presentation of a form of FC, though they'll vehemently deny that's what it is.)
The theme of this year's TEACCH conference, which we were attending as a vendor for most of last week, was Current Research Advances in Autism. Amy Wetherby was one of the featured speakers, and she also happens to be one of the contributors to the recent book Social & Communication Development in Autism Spectrum Disorders. Though we've actually had the book in stock since January, I wanted to highlight it now, because it is so relevant. Not to mention an excellent collection of chapters by leading researchers in the field.
Posts
