Reasonable People: A Memoir of Autism and Adoption

For a long time, I refused to buy any books with the dreaded "A" word in the title (that pesky magical thinking again). Somehow the idea of having them in the house made our suspicions, and then the emerging reality, seem more intense. But the ice had to melt, and eventually I broke down and bought Greenspan's The Child With Special Needs, and then The Out-Of-Sync Child, desperately trying to understand how our son was like the children described in those books. But he wasn't, really, not in any clear-cut way, and the whole idea that he might be "on the spectrum" filled us with equal parts dread and confusion.

That didn't stop me from sidling over to the children's section in the bookstore from time to time, then furtively paging through Quirky Kids and The Maverick Mind and countless others to see if any struck a chord. But I'd always leave the store empty-handed and a little shaken. Is this really us? Am I missing something? The first memoir I read was Paul Collins' Not Even Wrong (love him; reading Sixpence House now, which is about reading, not autism), and then Kamran Nazeer's Send in the Idiots, and then one day, in an effort to find a bit of serenity, Susan Senator's Making Peace with Autism. Around that time, J. and I started to ease up on the whole is-he-or-isn't-he debate, and accept that a) if there is a spectrum, he's on it; b) this is, in J's words, "current events, not prophecy" and c) none of this changes who my son is: a smart, delightful, funny, loving boy.

What were we resisting? That he was different from other children? No, that was pretty clear. That he has difficulties with speech, and motor planning, and sensory integration, and social situations? No, we got that. That we needed to give him as much therapy as we could reasonably fit into his life--and ours? No, he had a full program of therapies by the time he was two and a half. That we should limit our expectations? That he might never be independent? That he didn't have empathy? That we should just accept all the received wisdom about what a child with autism spectrum disorder can do and will become? That our life as we knew it was over? No. No. No. No. No. We didn't, and don't, accept any of that. He's given us no reason to; in fact, he's full of surprises.

So I was delighted to find a link to Ralph Savarese's LA Times editorial on Mom-NOS's blog a couple of weeks ago (thanks, Mom!), in which he espouses a joyful, optimistic and, I believe, respectful model for parenting a child with special needs. I was even more delighted to read his book Reasonable People: A Memoir of Autism & Adoption this past week. Let me say this upfront: it is not a book to pick up lightly. It's about intense commitment: commitment to a child with autism whose biological parents were unable or unwilling to care for him, who had suffered extreme neglect and abuse, who did not speak, and who, with the aid of his adoptive parents' incredible love and persistence and ingenuity and patience, learns to communicate independently, reflect on his past, participate and excel in school and give us a glimpse--more than a glimpse--into what autism feels like from the inside.

Heroic? Heartwarming? A triumph of the human spirit? I would say yes, actually, but that's not at all what Savarese is after. Like any thoughtful memoirist, he resists the narcissism inherent in the form, and it gnaws at him throughout the book. He doesn't want to be praised or idealized. He's not looking for the easy out. He insists meticulously on detailing his own doubts, faults, frailties through the process of bonding with, adopting and raising his son DJ. He doesn't shy from political, cultural, psychological, even literary analysis of autism and disability. He wants us to see it all: the anguish, the confusion, the joys, the mistakes, the odd trajectories of progress and regression.

Most stunning about this book is that, through the process of facilitated communication (in which he types his thoughts with some slight physical assistance from his parents), DJ becomes able to express himself and thus tell his own story. Savarese includes many of DJ's thoughts, poems and school assignments throughout the book, up to and including the final chapter, which is DJ's work entirely (I did find myself wishing that his wife had had a chapter too). I won't go into the whole facilitated communication debate here (Savarese covers that in great detail), but I was touched to hear this lovely boy's voice as he wrestled with the circumstances of his life and of his own identity, finally coming to a kind of peace. In DJ's words, "Breathing feels great now. Breathing feels kind of like joy."

Comments

[Kristina Chew]

I know what you mean about at first resisting reading books with the "a" word----then, once I got started, I have found it impossible to stop and I more than wish that Savarese's book had been available when we had started our journey.

[jamie]

hi susan
i read some of the entries and liked them a lot. you are a very skilled and thoughtful writer and i love hearing more about isaac's out of school life. i am drawn to the autism books also, as i have been drawn to people with autism for a long time. i'm sure you have read donna williams (nobody nowhere and somebody somewhere are the two i have read)--her story is also the inspiring
against all odds type but she is really just trying to communicate with a world that didn't understand her for a long time. i would like to check out savarese--i've worked with so many kids with disabilites in foster care (good and bad) and also want to read an intelligent person's experience with fc which was, at least where i worked on the east coast, being sold to parents in the form of expensive devices with no evidence of success.

have a great summer susan. i will miss isaac. he is an amazing and wonderful little boy.

[Niksmom]

Thanks for that, Susan. I've seen many posts lately about this book. After reading yours, and Kristina's comment about wishing she'd had this early on, I will put it at the top of my summer reading list, for sure!

[Jordan]

Thanks for posting this, Susan! I have ordered this book and can't wait for it to arrive! Sounds amazing.

[mothersvox]

Wow, Susan, I am so happy to have found your blog!!! Thanks for commenting over at Autism's Edges and leading me back here!

I haven't been surfing the blogosphere enough lately -- too many work deadlines over here -- and so I hadn't noticed your arrival.

I'm so happy to see what you're writing and to learn about your life with Isaac!

[G]

I have yet to read this book, (wasn't in at the bookstore or library). I am curious, does DJ ever learn to type without any assistance at all? Do they ever try to let him type while the assistant is blindfolded or can't see the board? This is what I want to find out. That would be the only way to prove to the skeptics that it is really DJ doing the communicating and not the Ouija board effect.

I really hope DJ can write an essay with either no human facilitator (perhaps they could rig up a sling or other mechanical device?) or one who cannot see, or doesn't speak English. That would be the solid proof facilitated communication needs and a huge achievement for science and autistic kids.

[ralph savarese]

A comment for "G." Is she aware of the new studies that confirm FC's legitimacy with at least some people with autism? (I list them in the back of my book.) Is she aware of those, like DJ, who have passed message-passing protocols where the facilitator is indeed naive? Is she aware of those who, having at the outset failed such protocols, learned, like students taking an SAT prep course, to pass them? Is she aware of those who have learned to type independently? Many of these folks took YEARS to accomplish this feat. Is she aware of those who have multiple facilitators--DJ has 15!--and whose idiosyncratic writing style remains the same across this very disparate group of facilitators? If "G" ends up reading the book, she will see that we spent four years teaching DJ how to be literate. Once he "proved" his competence by pointing INDEPENDENTLY at answers on a page or blackboard did everyone--parents, teachers, aides--feel comfortable with the notion of facilitated communication. (If your kid is not literate, FC can't possibly work--this is how the FC movement got into trouble in the early 90s.) The idea of waiting for total independence at the keyboard BEFORE one accepts the communication of people with classical autism is both cruel and unfair. At the same time, one has to be very careful about facilitator influence. And we are.
The field of classical autism is changing VERY quickly. New studies are showing that the presumption of mental retardation in classical autism is almost entirely unfounded. (Some of this material is in the book as well.) By changing the intelligence testing vehicle, many who were presumed retarded are now considered of average, or above average, intelligence. So, there's lots of circumstantial evidence suggesting that a technique like facilitated communicating--but not just this technique--is reasonable. But, again, your kid needs to be LITERATE for it to work. I find it very sad that all most people know about FC is the controversy from the 1990s, not the new developments. Ralph Savarese PhD