The Family Room

Yes, my friends, this is a pep talk

Yet another study showing that children on the autism spectrum have roughly the same mercury levels as those without; a family, for their 15 seconds of fame, pretends their son floated off in a makeshift balloon (I'm not even going to bother linking this), and H1N1 continues to send chills up the spines of everyone I know, parents or not.  

The truth is, we're in a good groove. "Mommy's happy," Isaac told me today. And then, "You look better." This because I have spent the last week fighting H1N1, trying by turns to rest, get some work done, and wipe down every surface I touch, which is harder than it sounds. But it's up to the fates at this point; I'm a petri dish, no matter how many bottles of hand sanitizer I go through.  And every day that passes without Isaac showing symptoms is a gift, and so we wait and see if we can all get through this unscathed.

"You look better." If I could bottle the rush of feeling those words give me and hand them out to every newly-diagnosed parent I know, I would. Four years ago, when we were paralyzed with fear and grief, and experts gave us an endless procession of dark looks, pamphlets and assorted laminated materials, I prayed (and I am not, I admit, a religious person) for my son to look at me, really look at me, and tell me what was on his mind. I prayed for him to argue with me, to tell me how he was feeling, to ask a question, to snuggle up to me in a movie theater, happily munching popcorn. Now, at age six, he's done all these things, and worn the 3-D glasses to boot. 

Now he lies in bed reading a pile of Arthur books before bed (six is about average these days), tells us when he's upset and needs a hug and asks everyone--even strangers--how old they are. It's not much, as social gestures go, but the first step is a doozy.  I am grateful beyond measure.

And yes, for the sake of clarity, he's on the autism spectrum; autistic if you prefer. Still is, probably always will be. We're not talking recovery or magical thinking here. His autism is a part of him, as much as his sandy hair, his brown eyes, his impish sense of humor.

This year I made a 3/4 year's resolution, which I've never done before, being the sort of person who never makes resolutions of any kind. It came to me partly because of the economy, and partly because the kid is so full of surprises lately. And it's this: don't give in to fear. In these dark, celebrity-obsessed, culture-of-fear times, I'm going to drop a little "Greatest Generation" wisdom on you from FDR's first inaugural address: "The only thing we have to fear is fear itself."  I'm not usually one for Serious Quotes from the Greats, but this one feels very personal right now, especially given the recent (ahem!) Autism Speaks video, which rivals Paranormal Activity for scaring the living crap out of people.

A box came from Amazon tonight. "It's my surprise!" Isaac exclaimed as J. opened it for him. Isaac took out the packing plastic, and then the packing slip (looking frankly a little dubious), only to find nestled beneath a pile of new Arthur books. He paused for a moment, not having yet been inducted into the mysteries of Books That Come in the Mail. 

"Where did they come out of?" he asked. But that's a question for another day.

Postcard from Constantinople

Dr. Seuss knew what he was doing. Somehow in the last week Isaac has managed to pick up Hop on Pop--possibly the most annoying children's book ever written--and read it aloud, cover to cover, several times.

it's not memory either: he's sounding it out.

It's his new bedtime routine. And oh the joy on his face when he reaches those last long and lovely words: Con-stan-tin-o-ple and Tim-buk-tu.

*
I took a cab this morning. The driver showed up on my doorstep; he was an older guy with intense eyes. He was friendly, courtly even, and mentioned several times during the ride that he was glad we weren't going to Fisherman's Wharf, because it's the worst tourist trap in San Francisco.

He'd grown up here and was old enough to remember when the cable cars passed right by my house.

He knew the magnitude of the '06 quake, and how many people had been killed. He told me that Enrico Caruso had been staying at the Palace Hotel, and that he'd run out of the hotel with a suitcase in hand, still wearing his pajamas. He told me Caruso was really a baritone, but his range was so wide that he could sing tenor. He recited dates, names, numbers until my head was spinning.

I started to tune out. My mind wandered. I wasn't uneasy, but I wanted him to stop. And then I realized.

I think maybe he's from France.

And I relaxed subtly, and just let his words tumble over me as we drove. As I left the cab I asked if he'd always been so good at numbers and dates. "Yes," he sighed. "But I forget the other stuff. It's why I drive a cab." He over pronounced the word, letting it linger in the air.

No moral here, no prophecy, just a story. But I wonder how things were for him; whether he had help, whether there was something else, whether it was hard or lonely or just different, whether he knew I recognized him.

Book Review - Look Me in the Eye: My Life with Asperger's

by Jordan Sadler, SLP

John Elder Robison has just had a wonderful book published.  Mr. Robison lives in western Massachusetts with his wife and teenage son; he runs a successful company, repairing and restoring fine European automobiles.  Mr. Robison also happens to have Asperger's. 

For much of the book, this is the way the story plays out - the fact that Mr. Robison has Asperger's takes a back seat to his fascinating life story.  Despite many roadblocks - some of them enormous, such as his mother's mental health challenges and his father's alcoholism - "Look Me in the Eye" ultimately reads as a success story. 

Mr. Robison was blessed with a very high level of intelligence, but what he makes clear in his book is that he was unhappy for many years.  It was a long time before he found a job that fit his abilities, and his first marriage did not last. Asperger's was not an identified diagnosis when this author was a child, and none of the professionals he worked with understood his unique set of characteristics. That is, until a close friend bravely handed him Tony Attwood's book, "Asperger's Syndrome" (the link is for the current edition of this book), noting that the characteristics outlined in the book fit Mr. Robison perfectly.  At age forty, Mr. Robison agreed.

The author explains the enormous shift in his understanding of himself upon reading Mr. Attwood's book and the impact this had on his entire life.  The last few chapters were particularly insightful, chronicling the years after diagnosis and the ways in which Mr. Robison processes thoughts and emotions.

As a therapist I found this book to be immensely interesting.  It is a rare gift to hear from this fifty-year old man exactly what he wishes he'd known about himself as a child, how his logical brain works, and what kinds of skills he would have liked to have been taught.  Here are some of the highlights:

• Making eye contact with others has been difficult for him for most of his life and when he is looking at someone, he is "unable to form words".  Later in life, he taught himself to glance at the eyes of a conversational partner to check in, but mainly looks away.  This fundamental challenge led others to describe him as "hiding something", a "criminal", a "sociopath", and a "psycho", beginning at a young age.  He states, "I came to believe what people said about me, because so many said the same thing, and the realization that I was defective hurt.  I became shyer, more withdrawn."
• There is an account of a simple conversation with a good friend, in which the author details his internal dialogue and the difficulty he frequently has in knowing what the expected, socially appropriate response is.  He notes, "It's clear to me that regular people have conversational capabilities far beyond mine, and their responses often have nothing at all to do with logic.  I suspect normal people are hardwired to develop the ability to read social cues in a way that I am not."
• The author makes a fascinating argument that as he gained "greater insight into [his] emotional life", his logical thought processes took a nosedive; he states that when he looks at the complex electrical circuits he designed when he was younger, he is no longer able to understand them.  I was glad to hear the author state clearly that he feels this was a worthwhile trade.
• Mr. Robison makes it very clear that doctors who describe children with autism and Asperger's as "preferring to play alone" (which we hear all the time), are "dead wrong".  He writes, "I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life."
• The author described the ways in which his wife helps him with his sensory processing challenges (e.g., sleeping "in a pile" with him, petting him when he gets jumpy), and how she deals with his anxieties.  One of my favorite sections on his marriage was his extremely analytical dissection of choosing a mate; he wonders if he got the "best sister" (his wife has two sisters, or "units", as he calls them), and likens this to a man wondering for years after buying a new car if he chose the best model.  Although he has heard the reactions of his neurotypical friends, he is unable to relate to their arguments because his mind works in such a strictly logical manner.

This book is a treasure for people with Asperger's as well as their families, friends, and the professionals who work with them, but it is also a very interesting book for anyone interested in human interaction and psychology.  It deserves a special place on the bookshelf right next to Temple Grandin and Daniel Tammet.

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."