Thursday, May 3, 2007

Reasonable People in an Unreasonable World

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.)

Wednesday, April 25, 2007

A Valuable New Tool for Teachers and Therapists

The authors of the popular Tasks Galore book series have developed an exciting new information-gathering tool that is now available for sale through our bookstore.

Titled Listen and Collaborate: Creating a Parent/Professional Partnership, this is a questionnaire set that is designed to help educators, therapists, and other professionals create targeted educational and therapeutic programs for students with autism and related developmental disorders. It is the authors’ view that a collaboration between professionals and parents is essential, and this tool allows professionals to obtain key information from parents and other caregivers in 8 major areas, ranging from expressive communication and social development to routines and self-help skills. The parent/caregiver questionnaire provides important information about each student, and it can be used to document a student’s progress over time. The completed questionnaire offers specific information that can help teachers formulate Individualized Education Program (IEP) goals for the student, and it also provides parents with valuable documentation about their child to share with other professionals, if they need to do so. A two-page student questionnaire is also included as part of the set.

Two versions of the questionnaires are available for purchase. Version 1 is designed for use with preschool and elementary learners, and it is also available in Spanish. Version 2 can be used with middle school, high school, and adult learners, and is available in Spanish as well.

Teachers and therapists who are trained in Structured Teaching methodology will be particularly interested in this valuable tool. The authors (Laurie Eckenrode, Pat Fennell, and Kathy Hearsey) are award-winning Division TEACCH-affiliated professionals who have provided extensive training in Structured Teaching to parents and educators for many years.

Thursday, April 19, 2007

Send In the Idiots Now in Paperback

Kamran Nazeer's brilliant book, Send In the Idiots, is now in paperback. (Yes, I know. I don't like the new cover as much, either.)

For those who haven't discovered this book yet, or were waiting for it to come out in paperback form, I can't recommend it enough. We hear so much about children who undergo early intervention programs, but what happens to them as adults? Kamran Nazee was one of those children, and in this book, he tracks down four of his classmates, and tells their stories intertwined with his own. He also tracks down his teachers and talks to them about issues of autism advocacy, such as whether it should be considered another legitimate state of being, similar to the deaf community.

In exploring the adult lives of his former classmates, he explores many fascinating ideas about how the larger world perceives individuals with autism, as well as how individuals with autism perceive the larger world. In one particularly poignant chapter, he explores the way one of his classmates is distanced by his partner, turned into something not-quite-human, by the label of "genius." Another classmate became a speech writer for the Democratic party during the 2004 US election cycle, and he and Nazeer explore some of the reasons they think the party failed to present themselves well. Not all adults with autism are happy and successful, though. The final classmate Nazeer tracked down had actually committed suicide. He spoke to her parents about her life and her struggles as she entered adulthood.

Nazeer's book offers a look at the broad range of people who make up the adult population of people with autism, which is an extremely valuable addition to the current literature. Exceptionally well-written and accessible to a general audience.

Friday, April 13, 2007

Banishing Verona

I recently finished reading the novel Banishing Verona, by Margot Livesey. It was a book suggested to us by an attendee at the ASNC annual conference, and we were surprised to have never heard of it before. One of the things we've noted is a lack of fiction for adults in the autism book field, but, with the amazing mainstream success of The Curious Incident of the Dog in the Night-Time, this seems to be changing. This seems to me to be a very good thing, because it is when things become more accepted and commonplace that they start appearing in mainstream fiction of writers mostly unconnected with autism directly.

In this case, Livesey says in the acknowledgements:
I'm grateful to those who talked to me, both professionally and personally, about their experiences with Asperger's syndrome.
I have to say, I think she did a fantastic job creating a real and very likeable adult character with AS.

I've had a hard time deciding exactly what to say about the story of this book, because I don't want to give too much of the plot away. The story has many unexpected twists and turns, and they are what make it so hard to put down. While I was reading this one, I had several days where I had to remind myself that I should, in fact, go home when the workday was over, because the book would be there to read when I got back in the morning. So I'll try to give you a basic idea, without giving too much away.

The story takes place in London, and is told in alternating sections from the points of view of each of the two main characters. Zeke Cafarelli is an adult man with AS. He has a successful house painting business, and enjoys doing all his jobs right, with a lot of attention to detail. His parents, on the other hand, think the painting business is a way of rebellion, and would far prefer for him to take over their produce shop. Verona McIntyre is a pregnant single woman slightly older than Zeke, who shows up out of the blue at a house he is working on, claiming to be the niece of the owners. She stays for two days, helping him paint, talking about anything than comes to mind, they unexpectedly fall in love, and then she disappears, leaving behind her grandfather's diary.

This is when Zeke's whole life changes. As one might expect for a person with AS, he has never felt very comfortable with change, and he has many problems with anxiety. At one point in the past, he had become completely agoraphobic. Now he finds himself confronting people he doesn't know in an attempt to find this mysterious woman, boarding a plane and flying to Boston on short notice, befriending new people in a strange city, and, just for added flavor in the background, having to mediate his parents' health crises and failing marriage.

Verona's story, too, is quite complicated. Before the book started, she was a successful radio interviewer with her own morning show. But now, a very strange series of events has thrown her life into chaos, and seems to be taking Zeke along for the ride, as he has become her anchor in the storm.

The dual perspectives on the story, and the sheer bizarreness of the continual series of near-misses that makes up their strange courtship, keeps the reader hanging on, wondering just what will happen next. I won't give away any more. You'll have to read the book to find out what happens!

Tuesday, April 10, 2007

Autism Awareness Month 2007

April is Autism Awareness Month! Therefore, during the month of April, if you place an order through our website and use the promotion code AAM2007 during checkout, you will receive 10% off your purchase!

Also, for AAM, the bookstore will be traveling to events. The soonest upcoming event is the Cabarrus County chapter of ASNC's 1st Annual Autism Awareness Fair, on Thursday, April 12, 6:30-8:30pm. It will be held at the NorthEast Medical Center (NEMC), in the Medical Arts Building, Hamrick Theater, in Concord, NC. If you're in the area, please stop by!

Monday, April 2, 2007