For parents with autistic children, trying to find proper treatment and medication for their child can be a difficult task. In Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children (Vanderbilt University Press, 2014), author and mother of an autistic child, Amy S. F. Lutz, tells stories of her son, Jonah, as well as other children and parents struggling with autism and searching for help in the autistic community. In this excerpt from Chapter 1, “Jonah, 2009: The Debate on Cognitive Side Effects,” Lutz recounts her attempts to find a well-suited treatment for her 11-year-old autistic son, ultimately finding some hope and assurance in electroconvulsive therapy treatment.
Crisis, I’ve discovered, is a relative term.
When the care manager who coordinates the services my autistic ten-year-old son, Jonah, gets from the State of Pennsylvania asks me if I’m in crisis, I’m not sure how to answer.
Is it a crisis if your son has just attacked your tiny Thai au pair, even if he hits you or his father or his teacher or his aides every day? What if you’re afraid that your son’s aggression toward the au pair represents an expansion of his range of potential targets, so that now you won’t only have to anticipate Jonah coming after the adults in charge, but also strangers in Costco, or neighbors over for dinner? What if this isn’t an isolated incident, because Jonah also recently hit one of his sisters and your greatest fear of all is that, instead of ignoring the seven other young children who live in your house—kids who obviously irritate Jonah with their shrieking, their intrusions, their stubborn fearlessness—he may start unleashing his rage against his siblings and his cousins? Is that crisis?
Apparently, at four-thirty on a Friday afternoon, insurance company managers have no patience for the nuances of crisis. Mine gives me the number of a psychiatric facility where I can take Jonah for an emergency evaluation.
I hang up the phone and call the hospital. A receptionist tells me that I should take Jonah to the local emergency room because “we don’t really treat autistic kids here.”
I call the insurance company back, wondering if anyone will even answer, since it’s now past five. My manager is still there. He puts me on hold while, I suppose, he calls the facility and berates them into agreeing to do the assessment.
“I’m not taking Jonah someplace that doesn’t work with autistic kids,” I say.
I can tell he’s getting impatient with me: first, I call him late on a Friday afternoon in a panic over Jonah’s escalating violence and my fear that he may need another hospitalization to adjust his medications, then I reject the only offer he’s able to scrape together on such short notice. He says that if I can’t wait until Monday I have no other options.
“I can wait,” I say. What would clearly be a crisis for virtually everyone I know is just a more intense level of the kind of behaviors we’ve been struggling with since Jonah was a toddler. “My husband will be home soon. We can manage.”
Yes, we manage. We’re very fortunate to have a lot of support. My sister, Keri, her husband, Matty, and their young kids, Declan (5), Ronan (3½), and Molly (1½), live with us. Matty has, on many occasions, stepped in front of a raging Jonah to spare me the brunt of an attack. We also have two childcare helpers who free me up to work one-on-one with Jonah, as well as a veritable stable of aides who free me up to spend time with my four other children: Erika (8), Hilary (6), and twins Aaron and Gretchen (3½). But I don’t always feel so lucky. Managing Jonah’s behavior occupies us 24/7. It dictates the places we can and can’t go, the things we can and can’t do, and often necessitates that we split up, with one of us—usually my husband, Andy—taking Jonah to the wholesale clubs he loves so much, with their walk-in freezers, their mysteriously appealing stacks of tires, and their enormous sheet cakes. Meanwhile I take my four younger kids to their swimming lessons, to the movies, to family functions Jonah has no patience for.
We’ve tried everything to control Jonah’s behaviors. At first, we were drawn to the alternative routes popular in the autistic community: we kept Jonah on a gluten- and casein-free diet for four years, and experimented with probiotics, B12 injections, auditory integration training, topical chelation, and hyperbaric oxygen therapy. When these didn’t help, we turned to psychiatry. Over the past six years, Jonah has been prescribed anticonvulsants that made him fat; stimulants that made him more agitated; antidepressants that made him manic; antihypertensives that did nothing at all; and antipsychotics that helped a little, but never enough, and made him even heavier. Now he takes lithium and Abilify, a cocktail created for him at the Kennedy Krieger Institute in Baltimore, where Jonah spent most of 2008 as a patient on the Neurobehavioral Unit (NBU). The NBU takes developmentally delayed kids with the very worst behaviors— teens so aggressive it takes seven armor-clad therapists to manage their outbursts, and children so self-injurious they wear helmets and padding so they don’t smash their heads against the walls or bite chunks out of their own arms. When Jonah was discharged from the NBU, with a diagnosis of rapid-cycling bipolar disorder with catatonic features to tack onto the autism diagnosis he’d been given at age two, he was fairly stable. Now, almost a year later, that’s no longer the case. In the past several weeks we’ve seen a ferocity in his tantrums we haven’t seen since before he was admitted to the NBU. Last month, while Jonah was riding in the car, he flew into a rage, whacking his head against the window and trying to kick, punch, and bite both Andy and the aide who was with them. Desperate to keep Jonah from attacking his grandfather, who was driving, Andy tried to restrain him. He ended up snapping Jonah’s arm. I will never forget running into the emergency room and finding my typically hyperactive son lying immobile on a gurney, asking surreally for a Band-Aid, while Andy sobbed over and over, “I’m sorry, I’m so sorry.” Neither of us could say what I know we both were thinking: How much longer can we do this?
I hang up the phone after my conversation with the care manager, feeling completely alone although right now there are fourteen other people in my house. Andy is still at work. Jonah is, for the time being, working quietly with his aide. The other kids are watching a movie in the basement, two floors beneath my feet. Keri and Matty are getting ready to go out with guests visiting from New York, a high school friend and her husband. I had seen them briefly in the kitchen, pretending they didn’t hear Jonah’s intermittent screams, notice his chapped and swollen hands, or hear that he had attacked the au pair. And I want to go down there and tell them—as I want to explain to everyone who’s witnessed one of Jonah’s violent outbursts—that this isn’t really Jonah, that these uncontrollable tantrums are part of his disorder, that at his core Jonah is a sweet, affectionate, funny kid who loves water parks and roller coasters and deliberately misquoting lines from his favorite videos. I want to tell them that these fits are aberrations, but I just don’t know if I believe that anymore. When something is as persistent as this rage has been; when it recurs again and again, despite the drugs and the behavior plans; when even the brightest minds in psychiatry and behavior can only control it for brief periods—well, when do you declare that something to be essential, not just an aberration? All this time, I think, burying my head in my hands. I really believed, all this time, we would beat this thing.
The phone rings on the desk next to my ear, right where I dropped it. It’s Dr. Lee Wachtel, Jonah’s psychiatrist at Kennedy Krieger. We haven’t seen Dr. Wachtel in almost a year, but she was the first person I called after I came home and found out about Jonah’s attack on Oat, our au pair. Not only does Dr. Wachtel know Jonah’s history, but I can’t think of anyone more experienced with the gamut of pharmacological and behavioral interventions used to treat this population. She stabilized Jonah once. Maybe, I had thought as I left what I’m sure was a frantic, semi-coherent message on her voicemail, she could help me stabilize him again.
Dr. Wachtel was calling from home. “I just got your message,” she says. “I was going to wait until Monday to call you back, but you sounded so upset I thought I’d better check in."
It’s a relief just to hear her voice. I tell her everything that’s been going on, from Andy breaking Jonah’s arm, to Jonah hitting Hilary in the car, to his aggression toward the au pair. I tell her that the medications are no longer working and I’m scared to experiment at home. I know the waiting list for the NBU is long, at times a year or more, but maybe she knows of another respected ward where Jonah’s medications could be safely adjusted?
Dr. Wachtel tells me about Shepherd Pratt, another facility in Maryland I had researched online before our admission to Kennedy Krieger. She agrees that it sounds like Jonah may need a second hospitalization. We talk about some of the other drugs that might be helpful, including riluzole, which we had tried at the end of Jonah’s stay on the NBU, but discontinued because it didn’t seem to help. Dr. Wachtel suspected the riluzole might not have worked because it was supposed to be taken on an empty stomach; at that time Jonah took all his medicine in a peanut butter sandwich because he couldn’t swallow pills. Riluzole significantly helped another patient who was on the unit while Jonah was there, a teenager who had previously been so violent that whenever he was moved around the NBU one of his many aides would holler, “Mark’s in the North Tower/South Tower/ Common Room!” so everyone knew to get out of the way. Riluzole was added to Mark’s regimen following his acute course of ECT, Dr. Wachtel explains, and now he’s getting ready to be discharged to a group home.
While Jonah was on the NBU, I knew that electroconvulsive therapy (ECT) was used on some of the more intractable patients, but Dr. Wachtel had never suggested we consider it because Jonah initially responded so well to the new medications. Now, however, I wonder aloud: “Did you ever think ECT might help Jonah?”
Dr. Wachtel pauses. And then she talks for a long time, the hope evident in her voice. The short answer is yes, she thinks Jonah could benefit from ECT. She’s used it on eleven kids with extreme behaviors who failed to respond after numerous medication trials, and all eleven showed substantial improvement. As I know, the NBU has a long waiting list, but Dr. Wachtel has colleagues in other hospitals who have also been extremely successful using ECT to treat kids like Jonah—doctors at facilities in Jackson, Mississippi; Ann Arbor, Michigan; and the closest to me, New York, who boast an impressive 80 percent remission rate.
Because of my casual exposure to ECT on the NBU, I know that it no longer looks anything like the torture depicted in One Flew Over the Cuckoo’s Nest—and that it didn’t even look like that in 1962 when Ken Kesey wrote the book upon which the movie was based. Since the late 1950s, ECT has been performed under general anesthesia, with muscle relaxants to prevent patients from thrashing. Still, Kesey’s anachronistic images continue to define the procedure for most laypeople and even for many doctors. Despite a mountain of scientific evidence documenting the safety and efficacy of ECT—studies Dr. Wachtel promises to send me—vocal anti-ECT lobbies, including the Church of Scientology, have compared treatment of patients with ECT to torture, crimes against humanity, and the practices of Nazi doctors during the Holocaust.
I promise to read the studies and to pursue additional research on my own—and I will. But what I don’t tell Dr. Wachtel is that my Each Day I Like It Better 6 decision has already been made. More accurately, there is no decision to make: a decision requires multiple choices, and it’s obvious to me that we have run out of options. I can’t help thinking about the months Jonah was at Kennedy Krieger and how many times well-meaning friends patted me on the shoulder and sympathetically murmured, That must have been such a difficult decision. They seemed so surprised when I corrected them that after a while I just stopped saying that it was, in fact, one of the easiest decisions we ever made. Jonah’s school had expelled him, his psychiatrist was confounded by him. After all our failed interventions, taking him anywhere other than Kennedy Krieger, widely respected as one of the best treatment centers in the world for kids with dangerous behaviors, would have felt like giving up.
And now, what are our choices? Another hospitalization? Different combinations of the same kinds of hardcore psychotropics we’ve been pumping into Jonah since he was five years old? Honestly, it’s hard to imagine anything about ECT could scare me as much as antipsychotics. This most common family of medications used to treat aggression in autistic children has a truly alarming side-effect profile: acute dystonia (severe muscular cramping), akathisia (a frantic and reportedly unbearable restlessness usually described as feeling like “ants in your pants”), tardive dyskinesia (a transient or permanent syndrome of abnormal, involuntary movements), glaucoma, and neuroleptic malignant syndrome (a potentially fatal reaction to antipsychotics that presents with fever, stiffness, delirium, and autonomic system instability). In her book We’ve Got Issues: Children and Parents in the Age of Medication, Judith Warner reports that over two hundred children died between 2000 and 2006 due to complications from antipsychotic use, and she takes pains to point out that, because reporting these reactions to the FDA is not mandated by law, the number is likely much higher.
This list doesn’t even include the most ubiquitous side effect— weight gain—which is so common it’s taken for granted, although it obviously predisposes patients to significant health problems, such as diabetes and heart disease. A 2006 study reported that these chronic conditions contribute to a significantly abbreviated life span for patients treated in public mental facilities—an average twentyfive years shorter than that of the general population. When Jonah was admitted to Kennedy Krieger, the first thing Dr. Wachtel did was wean him off the Risperdal that, although it failed to improve his behavior, did earn him a new diagnosis—obesity—to add to his growing list of labels. By the time he was discharged, Jonah had dropped twenty-four pounds—almost a quarter of his initial body weight.
After Dr. Wachtel offers to send me the contact information of parents whose children have been treated with ECT, I let her go back to her own kids, whom I hear clamoring for her attention in the background. Eleven out of eleven, I think, as I hang up. It’s hard to argue with those numbers.
When Jonah was first diagnosed, I spent a lot of time looking for what I referred to as “Jonah’s miracle.” Since the first book we read about autism was Karyn Seroussi’s account of how her son was virtually cured by a gluten- and casein-free diet, (Unraveling the Mystery of Autism and Pervasive Developmental Disorder, Simon & Schuster, 2000). Andy and I hoped that diet would be Jonah’s miracle as well. After four years of soy pretzels and rice pasta, we realized the diet wasn’t helping. Other candidates for Jonah’s miracle included the melatonin we started giving him when he was four that caused a substantial improvement in his behavior, but only for a few months; the forty hyperbaric oxygen treatments that would have definitely bought us a miracle, if one could be purchased with enough time or money; even the lithium, which we had erroneously imagined as the missing puzzle piece that would meet the jagged edges of Jonah’s bipolar disorder and create a complete and harmonious design suitable for framing.
We don’t talk much about miracles anymore. Now that Jonah’s almost eleven, it’s clear he won’t be the handsome but socially awkward math geek who can’t be pried away from his computer by the hottest coeds M.I.T. has to offer, as Andy and I used to joke. Now when I dwell upon the future, my thoughts evolve into a prayer of sorts about the life I don’t want for Jonah: a locked ward, heavy sedation, restraints. Jonah is likely to be big and strong like his father, who is 6’1” and weighs over 220 pounds. Even if he only has violent tantrums once a week or even once a month—a huge reduction from his current, medicated level of aggression—they will still preclude him from working, participating in the community, and staying with us or transitioning to a group home.
On February 6, 2009, Kent State Professor Trudy Steuernagel died following a brutal beating at the hands of her nineteen-year-old autistic son, Sky Walker. It chilled me to read the parts of this heartbreaking story that echoed our struggles with Jonah: how smart Trudy always said Sky was, when he was in a good mood; the obsessions with food that often fueled Sky’s tantrums; Trudy’s persistent hope, despite the medicine cabinet filled with useless prescriptions, that doctors would find the right cocktail of drugs that would stabilize Sky’s behavior. Then, the ominous warning that echoed what I had heard before—how Sky’s violence escalated during puberty, a common pattern in autistic boys. Jonah, two months shy of his eleventh birthday, is just starting to go through adolescence; when his arm was in a cast from shoulder to thumb, we tried to stretch his daily showers to once every two or three days and discovered that it was time for him to start using deodorant. There isn’t a day that goes by now that I don’t think, we haven’t got much time.
So no, we don’t talk about miracles anymore. But, regardless of whether we are objectively, officially, “in crisis,” it’s clear we need one, more than ever. Sitting in my office, the phone lying belly-up on the desk in front of me, I recognize the excitement humming along my nerves—it’s the same giddy hope I felt when my school district agreed to pay over $60,000 a year to send Jonah to the Nexus School, a lovely little private school for autistic children that kicked him out less than a week after he transferred there; that I felt again when Kennedy Krieger called after four months of home-schooling to say that a bed had finally opened up for Jonah. It was that feeling that never really goes away, whether or not you articulate it: Maybe this could be Jonah’s miracle.