Bad Animals, page 12
We are less wistful about our old dining room. If we had some plan to have impromptu, banter-filled dinner parties every weekend, the casual kind they always seemed to be having on thirtysomething, for instance, it was never a real plan. We have gone to dinner parties where our hosts have the menu for the evening printed on a tiny chalkboard. We’ve sat down to a real dining room table set with real dishes and an array of forks, with cloth napkins and crystal ware. How ridiculous, I remember thinking, how wonderful!
The fact is we became, after Jonah was born, isolated and self-sufficient. We were a content, busy little island. Permanent population: three. We all got used to each other fast and, at the same time, kept surprising each other. Cynthia and I hadn’t been together very long after all, and that made it easy to let go of our short-lived coupledom and carry on living our lives as a trio. The Three Musketeers-. one for all and all for one. Jonah didn’t change our family dynamic; he provided our family with its dynamic. The situation suited us fine for long stretches. My sisters were in and out, videotaping, bringing new clothes. Cynthia’s parents also visited regularly. Other relatives and friends would show up now and then. Otherwise, they waited for an invitation that we simply forgot to extend. Whenever the phone or doorbell rang we jumped like we’d received a small shock. My initial reaction to visitors, however welcome or needed, never changed. What do they want now?
This may explain why I still can’t get used to our regular Friday meetings, not even after all this time. The meetings can be hard on everyone—on our consultant, who feels pressured to show that, even in the last two weeks, there has been some small but identifiable progress; on the team of therapists, who are likely to be criticized if things aren’t going well; on Cynthia and me, who can’t win either way. We are not usually criticized directly by the team or directly critical of it, but we are keenly aware of how most meetings will encompass both possibilities, switching, without much warning, from our feeling blamed to our feeling like blaming someone else. We are always aware that while we are an essential part of the team, we are apart from it, too.
The meetings are also hard on Jonah. He doesn’t deal well with the expectations of others, no matter how modest those expectations might be. Often, it’s my job to distract him at those times during a meeting when it might be better if he didn’t hear what’s being said about him. Mostly, though, he needs to be around, so the therapists can practise new programs and strategies on him and so The Consultant can observe and take notes. Of course, hypersensitivity is a characteristic of autism, but—who am I kidding?—it’s also a family trait. What, then, is the determining factor in Jonah’s personality? Would he be hypersensitive even if he didn’t have autism?
This is one of the controversies stirring around autism now, one of the debates you’ll find addressed in websites like Neurodiversity.com or “Demystifying Autism from the Inside Out” at williamstillman.com. William Stillman is the quintessential insider. His website identifies him as “The Autism Whisperer.” He has Asperger’s syndrome himself and advocates for others on the spectrum. He’s a fierce opponent of treatments like ABA and encourages parents to accept their children for who they are. His books—like The Soul of Autism, The Autism Prophecies, and Autism and the God Connection—go way beyond acceptance as a matter of fact. They identify autism as a kind of supernatural gift. Stillman believes autism can imbue in people psychic and spiritual powers. “What if it has a purpose?” he asks. “What if there is a plan?”
These are not questions I’ve ever asked myself. Still, I wonder sometimes, as most parents of a child with autism do, what is the dividing line between an autistic personality and simply personality? Autism, like so many other things these days, has become politicized, an issue of equal rights and advocacy for some, including some very high-functioning and highly motivated adults on the spectrum. More and more, these are individuals who, as they grow older, refuse to be defined by their disorder or even view autism as a disorder or disability at all. For them, it’s hardly more than a difference, a variation on our infinitely various human nature. No different from skin colour, say, or sexual orientation. They also insist that if a vaccine were created or a magic pill introduced that would cure autism and make them neurotypical overnight, they would not take it. They wouldn’t even consider it. Take away their autism and you take away a fundamental part of who they are and what they have achieved. Not to mention what they might one day be capable of achieving.
TIM PAGE, A Pulitzer Prize-winning music critic for the Washington Post, was diagnosed with Asperger’s syndrome as an adult. He wrote about this discovery in The New Yorker and then later in his memoir, Parallel Play: Growing Up with Undiagnosed Asperger’s. His discovery that he was on the autism spectrum, even the highest-functioning end of it, helped him to identify what he calls “my lifelong unease.” What also became clear to him was that much of his success as a music critic happened “not despite but because of Asperger’s.” He seems both unable and unwilling to separate the disadvantages from the advantages of autism. Being on the spectrum meant a lonely childhood as well as a lifelong capacity to see the world around him from a unique and uniquely insightful perspective. This proved to be a useful skill set for a critic and a journalist.
Then there’s the increasingly celebrated case of Temple Grandin. Grandin has a Ph.D. in animal science and teaches at the University of Colorado. Her ideas and inventions, dedicated to improving the lives and particularly the deaths of livestock, are used in more than half the animal-handling facilities in North America. She acts as a consultant to multinational corporations like McDonald’s and Burger King. She also has autism; in fact, she is arguably the most famous autistic individual in the world, perhaps even more so than Dustin Hoffman’s fictional character, Raymond Babbitt, in Rain Man. Oliver Sacks brought her story to public attention in his 1996 bestseller Anthropologist on Mars: Seven Paradoxical Tales. (The title paradoxical tale is about Grandin, a reference to the way she defines herself and her interaction with the rest of the neurotypical planet.) In recent years, she has lectured widely about autism. She’s also written about the subject, most notably in her memoirs Emergence: Labeled Autistic (co-written with Margaret M. Scariano) and Thinking in Pictures: And Other Reports from My Life with Autism. Both books were the basis of a 2010 Emmy Award-winning HBO movie with Clare Danes playing the part of Grandin.
Neurodiversity is a new term that further stretches the already elastic nature of the autism spectrum. It is a kinder, less stigmatizing label. Simon Baron-Cohen, the British psychologist and autism expert, has gone so far as to say that in the future “it is going to be increasingly controversial whether autism is something that needs to be cured or not. Perhaps it is more a personality type.”
It helps, too, when there are talented writers around like Page, Grandin, and Kamran Nazeer to tell their stories from the inside out. Though, in some ways, their ability to articulate their experience alters it to the point where it is no longer purely autistic. At the end of Send in the Idiots, Nazeer gives some credence to the neurodiversity argument, but he concludes that while there may be something distinctive about the autistic mind, even advantages to it, “at least some of that autism has to be removed, or eased, before autistic people can communicate meaningfully, even with one another, and set their minds upon the world.”
Grandin no longer thinks of herself as autistic in the classic sense. But she recognizes she’s not indistinguishable either. She figures if she were evaluated today the diagnosis would likely be Asperger’s. In her books, Grandin is straightforward, almost matter-of-fact about her disorder—about the deficits she has because of it and also some obvious advantages it has afforded her. (The advantages, not surprisingly, are emphasized in the HBO movie.) Like most people with autism, Grandin is a visual thinker; in her case, this has made her an expert at empathizing with animals. “If I could snap my fingers and be nonautistic, I would not,” Grandin told Sacks. “Autism is part of what I am.”
Neurodiversity has its selling points for parents, too. It can be a convenient way to dodge the big question, the one that will invariably come up for every parent of a child with special needs or, for that matter, special problems. Would I take away the autism now, knowing what I do about my child, knowing him or her the way I do? Would I flick a switch and have it vanish, understanding that this would fundamentally change my child’s personality, change who he or she is? I can’t deny it would in Jonah’s case. How could it not change the funny, unusual, mostly happy boy I love so deeply and am so deeply frustrated by? So, would I do it? Perhaps the more significant question is: do I have to think about whether I would? No. If it were up to me, I’d do it in a heartbeat, one guilty heartbeat.
“HE’S SO CUTE,” The Consultant says during every Friday meeting. In fact, she says it so often it begins to sound like her verbal stim. She hasn’t always been an easy person to work with or to have as such an important part of our lives. This has been especially true for Cynthia: the two are always butting heads. I’m convinced now, after seven years, that’s the way The Consultant wants it. Parents are an occupational hazard in ABA therapy, just one more variable that has to be managed, manipulated, modified. They are too emotionally involved and, as a consequence, prone to inconsistency. As an added consequence, they can’t always be expected to know what’s best for their child. No one ever comes out and says this of course; it only feels as if they have. But if our relationship with The Consultant has had its inevitable ups and downs, her dedication to Jonah is genuine. It’s true, too, that he listens to her and behaves well for her in ways he seldom does for us. There’s a reason for this—she’s unflappable. She has no buttons to push. Whereas I sometimes think I am nothing but buttons: big flashing, beeping, unconcealed buttons. The Consultant’s ability to keep Jonah in line is another source of frustration for Cynthia and me. Why can’t we do what she’s doing?
“Just be his parents, just act like his parents,” she told us at a meeting a few years into Jonah’s ABA therapy. It was delivered like a pronouncement. It was received like a head-smacking revelation. Why Didn’t we think of that? By then, though, it was no longer so simple. By then, we had spent too much time studying him, analyzing him.
Besides, he is cute. Still, there are times when The Consultants impulsive, almost compulsive comment about Jonah’s appearance can’t help sounding like a euphemism. Like a default position. As if, after all this time and all this therapy, that has remained the best thing she can say about him.
“He’s so interesting. Don’t you find him interesting?” she asked Cynthia in the course of one particularly stressful meeting about two years into ABA therapy. When Cynthia didn’t answer, she repeated the question. Then she turned to me. I didn’t answer either. Instead, I bit my lip so hard I could taste a tiny drop of blood. This new question came at a time when Jonah’s therapy was going poorly for reasons no one could seem to figure out. The Consultant was insisting there was an antecedent for his behaviour; according to her there always was. So, yes, in that regard, the mystery of his misbehaviour was interesting. However, the misbehaviour itself was driving us crazy. Jonah had stopped complying with the simplest requests. He wasn’t doing well in his sessions with his therapists. It felt as if we were starting over again. As if we were back in those early days, when his sessions were torture for everyone involved.
There were times when he would cry through the entire three hours of therapy. Times when his protests would become so vehement, so painful to hear, Cynthia and I retreated to our bedroom, closed the door, and put pillows over our heads to shut out what was being inflicted on our son, what we were, by proxy, inflicting on him. Often, I had to physically restrain Cynthia from leaving the room and putting a stop to what was going on at the other end of our house. Often, she did the same for me.
Things weren’t much better in daily life. Tantrums had become routine—for Jonah and me. He’d cry and rage and I’d explode. I can’t count the number of times I was exiled to the basement. “If you have to brood, brood there,” Cynthia would say. During one particularly bad patch, I stayed with my sister for three weeks. I’d come down with a flu, which persisted and developed into pneumonia. Cynthia was at the end of her rope. “I can’t take care of both of you,” she said. I know there were people close to us who couldn’t understand what was going on. I couldn’t either. That’s what I said anyway whenever my sisters or a friend tiptoed around the question of whether this was some kind of trial separation. But I knew why I had to leave. It’s because the worse Jonah behaved the worse I behaved. Or perhaps, it was the other way around. There was no way of telling. It was entirely possible that I was the antecedent. I talked to Cynthia on the telephone every night, and our conversations became increasingly strained. Things were fine, she’d say, a hard response to interpret. Did that mean she was managing? Or that she was managing better? Once I was feeling better, I visited Jonah a few evenings a week, which provided a glimpse of what it might be like to be a part-time father, to be one of those men who leave. It had never occurred to me before that I could do that. Simply go. I could dispense with responsibility, obligation, loyalty, the way you dispense with old clothes that don’t suit you any more. I could be one of those guys—a selfish jerk, an oblivious asshole.
There was something to be said for being an asshole, for leaving. I learned that while I was away. It required a kind of boldness I began to believe I might be capable of. A person could get used to the anxiety of coming and the relief of going, even used to the guilt attached to both. A person could pretend he was free to meet other people, to start over. A person could see how that might be feasible, might even make him happy again.
Anyway, it was during this period that The Consultant began to mention the possibility that Jonah might be shutting down. This is a persistent worry in ABA therapy: that a child will regress, find his treatment program aversive, and lose all the skills he has been so painstakingly taught. It’s not always clear why this happens. Often, it can be as simple as thinking a child is capable of doing something he’s not capable of. This explains the decision to shelve Mr. Potato Head. The consequences of a simple mistake or miscalculation can be devastating. It can mean starting all over again, returning to a time when Jonah had to practically be dragged, kicking and screaming, to his table for a session. Compliance is an essential starting point in ABA therapy, and when he first began ABA, Jonah had learned it slowly and also grudgingly. Still, once it was mastered I assumed it was mastered. Didn’t Pavlov’s dog respond to the ringing bell forever after? Wasn’t that the whole point of behaviour modification? That the new behaviour, once established, stuck? Money in the bank: bell, salivate, bell, salivate. Except Jonah was taking a stand; he was no longer doing what the science, the data, expected of him.
There were reasons for this—extinction burst was one. We heard the term used often as a way to explain why Jonah sometimes seemed to be regressing when, in fact, he was not. It was just a jargony way of saying things were likely to get worse before they got better. This time, though, they just got worse. Jonah’s tantrums became more frequent, more intense. That’s what The Consultant found interesting enough to comment on repeatedly that day at the meeting—our son’s unexpected, unexplained turnabout, our son as the exception to the ABA rule. Clearly, this was a turn of events she could learn from, if not for Jonah’s sake, then for the sake of future clients. This is, clearly, the advantage of being the person who is running the lab experiment as opposed to the people being run through it.
During the remainder of the three-hour meeting, The Consultant returned frequently to some variation of the isn’t-he-interesting question. For this meeting, anyway, it had replaced her usual running commentary on Jonah’s cuteness. I even began to develop a conditioned response to when she was going to ask it. After an outburst by Jonah, followed by a particularly uncomfortable silence in the room, I’d flinch and then there it would be—that question. Cynthia sensed when it was coming too because she got up and left the room just in time and did so more than once. The entire session was beginning to feel like a kind of enhanced interrogation, as though we, Jonah, Cynthia, and I, were being pressed to divulge some secret. The assumption was we knew more than we were letting on. We were like spies: we knew the antecedent, but we’d trained ourselves not to reveal it. The Consultant assumed that something must have happened or changed at home, some inconsistency, some slip-up that had set all this off, that served as the missing piece in the puzzle. The other therapists squirmed on our behalf and tried, without success, to change the subject. Meanwhile, Jonah became less compliant, even aggressive. He bit his arm and then tried, half-heartedly, to bite one of his therapists. We’d never seen that combination of behaviour before. He was not an aggressive child. The level and frequency of his stimming, particularly his verbal stimming, escalated, too. He babbled non-stop and incoherently.
I did my best to convey a look to The Consultant that would indicate we’d had enough, all of us. And that if she really wanted to see an extinction burst, I was about to give her one to remember. How about the flame-thrower scene? Like Pacino, like Jonah, I had had my limit; I was regressing too. I’d have to be retrained. But, to her credit, The Consultant was not concerned with me. I would have to say something, I thought, hut what? All I could think of was a simple unmistakable request for her to shut up. Shut the fuck up.
