I Have Been Buried Under Years of Dust Read online

  Emily also demonstrated a great resistance to even minor changes in her routine and surroundings, a quality that behavioral modification was intended to address. For example, she preferred a certain route when I drove to Target and became agitated if I took a different way. She resisted playing with toys and had to be coaxed into doing so. At times, she screamed at sudden loud noises like coughing or sneezing, and would gag at strong smells like bleach. I learned that not all children with autism show all the signs, and many children who don’t have autism show a few of them.

  Over time, I have had the opportunity to work with Deborah Budding, a neuropsychologist who specializes in sensorimotor development and subcortical contributions to neurodevelopmental and psychiatric disorders, including autism. Recently, at Emily’s request we met with her so that she could answer Emily’s questions regarding the disorder. She provided us with a definition of autism that was a little different from what we’d initially understood, and yet it rang true. She said that autism is a motor/movement disorder that affects the timing and quality of movements, including those involved in communication. “Movement is everything,” Dr. Budding said. “There is nothing that we do that does not involve movement in some way.”

  Further, Dr. Budding does not believe autism to be an illness, per se. She acknowledged that with autism there is often comorbidity with medical illnesses, like epilepsy or ADHD*; this has been well documented and makes sense because autism is a function of motor limitation, and it affects just about every part of a person’s being. However, she believes that much of what may look like “illness” is really a result of the nervous system’s dysfunction, including poorly supported communication. If one accepts that autism is not an illness, then it is not a disease to be cured but more a state of being that requires varying degrees of support given the world we live in. For example, people with autism may benefit from being trained to use typed communication, and though some are able to access speech, they may need speech therapy to do so more fluently. Other supports they would benefit from include assistance in developing daily living skills like grooming, home care, using public transportation, and navigating the ever-changing landscape of the world we live in.

  I agree with Dr. Budding that autism is not a disease or illness at all. The way I see it, it’s a condition made up of certain neurological challenges, a function of brain synapses that fail to connect adequately, and which results in physical attributes like an odd gait and arms that don’t move when the person walks. Fundamentally, it’s a neurological motor issue affecting motor skills, and most definitely not a psychological disorder.

  One of the most puzzling phenomena associated with ASD is when children seem to regress developmentally—Emily’s loss of emerging speech, for example, or her early imaginative play that seemed to disappear. The assertion that such regression occurs is not shared by all the experts. Many claim that about one-third of young children with ASD lose some skills during the preschool period, usually speech, but sometimes also nonverbal communication, social or play skills. No one really knows the nature or mechanism involved in this so-called regression.

  While Tom and I initially thought we were witnessing Emily’s preschool regression, the reality seen from today’s vantage point is this: When we look back at early photos and videos of Emily, it’s pretty clear that she presented with many elements of the disability long before she was formally diagnosed—we just didn’t recognize them. Maybe she didn’t really regress at all and we simply didn’t comprehend what we were seeing.

  Indeed, shortly after Emily was diagnosed, I was told by a developmental pediatrician that experts were looking closer at the movement of infants in their cribs; they believed they could see early warning signs of autism in very young infants. It really is a question of knowing what to look for, this doctor said. Perhaps what appears to be regression in these young children is misunderstood.

  Either way, as we’ve seen, Emily presented with all the markers of classic autism that had been identified in 1993. She toe-walked, and failed to make eye contact. As a baby, she made guttural, animal noises but these sounds changed over the years. Now those early sounds are gone, and though she still does not talk much, she makes near-constant noises, as if she is perpetually talking to herself. Her sounds are a kind of singsong cadence that’s somewhat like a background melody. She’s learned to be quiet when needed, in a classroom, say, but the ongoing sounds she makes are often when she is not under pressure to restrain them.

  Emily will still engage in self-stimulatory activity when she is anxious, overwhelmed, excited, happy. From what I’ve come to understand, the “stimming” that autistic individuals engage in is really not so different from some behaviors that many of us neurotypical folks do and has the same intended purpose. Biting your nails, tapping a pencil, twirling your hair: these are all activities that may help to calm or focus you and are all a form of stimming. What sets apart autistic stimming, though, is simply what is culturally tolerated.

  There’s no question that some stims can be quite extreme and legitimately upsetting or even frightening to other people. Meltdowns—which are a function of a person’s system being flooded or physically overwhelmed by sensory input—can be alarming in their intensity and duration. Deborah Budding makes a distinction between a tantrum, which is an effort to control others through acting out, and a meltdown, which is when a person is overtaken physiologically by some event in the environment. A person might learn how to rein in tantrums, but meltdowns are another story, often outside the person’s realm of control.

  IN 1993, WHEN Emily was diagnosed, all resources for remediation pointed to applied behavior analysis—what we’d been doing with Doreen and her team of behaviorists. ABA was then the most researched and commonly used intervention, the gold standard. We were told, like many other families at the time, that the only way out of autism was to provide very intensive ABA therapy, up to forty hours a week.

  Many families I have met and spoken with since then, though certainly not all, believe that ABA created a negative experience for their child. In fact, many young adults who were subjected to ABA have shared their experience from a personal point of view and feel similarly. Emily has written of her own frustrations with the ABA therapy, noting that doing mundane tasks like touching her nose on command did little to help her. As with anything, though, everyone has a different experience.

  I have my own perspective on the final results of the ABA therapy. I believe that because in therapy she was always responding to the demands of another person—touch your nose, touch your head, come here, put the toy there—Emily learned to always be in a reactive mode. She was never taught to be proactive. As a result, she developed a fear of initiating action, a personality attribute that has remained with her. To this day, she won’t ask for a snack when hungry. She rarely asserts herself verbally and originates very few actions on her own. She rarely if ever requests or demands anything of anyone. I believe this stems from the ABA.

  Meanwhile, the speech and occupational therapies we pursued had mixed results. School- and clinic-based occupational therapy, which addressed Emily’s fine and gross motor skills and issues with her internal timing, were helpful. However, the most significant contribution to Emily’s development came from a specialized gymnastics program, BIG FUN, that Emily attended from seven until about twelve. Gene Hurwin, an occupational therapist who developed the program, wanted to address the gross and fine motor issues of autistic children through gymnastics, and particularly their neurotiming—the synchronization of neural impulses within key brain networks for cognitive, communicative, sensory, and motor performance. His approach included work on the balance beam, tumbling, climbing apparatus, and trampoline to help children synchronize their bodies and minimize those aspects of their movements that were off by just a second or two from their neurotypical peers—an awkward gait, say, or arms that did not swing when walking. Though the program also focused on sensory integration—an effort to integrat
e the sensory sensitivity of the autistic child with environmental noises—Emily experienced limited progress in this area. From my perspective, one session with Gene was worth five sessions of generic occupational therapy because movement and timing were key issues with Emily’s limitations. By addressing those disconnects, we gained the most progress.

  The speech therapy services that we also sought, on the other hand, clearly did not help in the ways we’d hoped.

  All these observations come in hindsight and are limited to my experience with Emily. There’s a saying in the autistic community: “If you’ve met one autistic person, you’ve met one autistic person.” There’s such a range of behaviors and experiences that to generalize in any way is to do a grave disservice. Emily has certain skills and abilities that other autistic people do not, while others may have skills and abilities Emily does not. It’s all so varied. So of course, what would help her may be different from what would help someone else.

  To get a better sense of where Emily falls in the continuum of those who are considered to be autistic, I recently asked Nancy Wolf, MD, a specialist in child and adolescent psychiatry and one of Emily’s doctors who has seen Emily since she was thirteen, to give her assessment of Emily.

  “When I first saw her, my immediate impression was that I thought that there was something else going on besides autism, and that I was looking at somebody who was acutely intelligent. And yet she wasn’t able to answer me, and she was just making noises. She had way too attentive and intelligent a look for her not to be much more aware than she was credited to be, or at least having read notes of prior doctors and such.

  “She did have this aphasia”—the loss of ability to express speech, usually caused by brain damage. Still, “I thought that she had much more understanding and comprehension of things than we were really able to prove, or were aware of.”

  As evidence of this comprehension, Dr. Wolf pointed out Emily’s attendance in school.

  “When she went to school with an aide, she was able to take fairly sophisticated courses. I thought to myself, if she wasn’t comprehending any of this, she would get up and leave or have a tantrum, because she was prone to tantrums. She wouldn’t have been able to stay in the classrooms because she would have been stimming so much. She would have made a lot more noises and been so disruptive in the classes. They wouldn’t have been able to keep her there. But the fact was that she did attend school and was anxious to attend school, and wanted to be there.” That desire, Dr. Wolf implied, indicated a lot.

  “Her speech is really kind of odd. It would be very gruff. It was really hard for her to even verbalize those kinds of inputs.” Still, Emily was “way too appropriate in the way she responded. There were certain questions I could ask, and she would respond with a correct yes or no each time and was accurate.

  “‘Is your name Emily?’

  “‘Yes.’

  “‘Is your name Susan?’

  “‘No.’”

  Dr. Wolf varied the questions, but Emily always had an applicable, accurate response.

  “She did have enormous physical control challenges,” the doctor recalled. “Like tantrums, and if she stayed in one place too long, she’d become restless. I saw what you and Tom must have had to deal with at home. That would cause a lot of friction.”

  As far as her diagnosis goes, Dr. Wolf said to look at the DSM-IV and -5 as systems of categorization. “They’re like Chinese restaurant menus, two from column A and three from column B, and you have a diagnosis. . . . What I was saying, is that a diagnosis is a phenomenological entity. It doesn’t explain why somebody has what they have. They have [it], it just shows you what you see.”

  In discussing Emily’s case, she listed the evidence.

  “She stims, making unusual motions with her hands in front of her eyes. These are things people with autism do to calm themselves. She has the hypersensitivity to a lot of stimuli” that’s often seen with autism. “She has impaired communication and impaired social relationships” that are also common.

  “So she fits whatever criteria is necessary to call her autistic,” but that diagnosis doesn’t speak to whether she has this phenomenon due to brain damage, or whether she stims because she has an allergy, or anything else. “Could her symptoms be caused by variable diseases? Technically, they could.”

  Given the restaurant menu approach to choose from, Dr. Wolf said she technically fits the criteria as listed in the DSM to classify her as autistic.

  There can be no assumptions made within autism. We’re not all alike. Not at all. There is no textbook, as they say, no clear description of the word ‘autism’ that identifies all of us. If you ask me, it’s worse a crime than stereotyping to think of us as all being similar.

  I am one of the lucky ones. I had people who saw the person I was. I had people who knew that I was not as cognitively small as my speech was determined to portray.

  I also know that I can’t speak for every autistic person either, because if I did, my words would make me just as guilty as those who stuff us all into the same box.

  Which brings me to one example: the assumption so often made that all autistic people are extremely literal. But I can write figuratively and in metaphor and abstractly, and in turn I can hear these things and think around the words to uncover their true meaning within a sentence.

  When it comes to autistic people, it’s best not to make assumptions. Many of us have skills that might surprise you. None of us is the same.

  7

  A group of kids led by Alicia Elliott’s partner were singing “Baby Beluga,” a nursery song made famous by Raffi, when the three of us arrived at her office.

  Baby beluga in the deep blue sea

  Swim so wild and you swim so free

  Heaven above and the sea below

  And a little white whale on the go

  In no time, Emily was trying to follow along and enunciate the words.

  Tom had come with me to visit the group class on a Saturday. When I’d issued my ultimatum, I hadn’t thought through the implications of my words; I didn’t have a plan. I loved him, and I was lashing out in a moment of anger and exasperation. I’d wanted to force the issue, to make him pay attention. I’d been so obsessed with this new plan, I was ready to bulldoze my way there. The fact that he was willing to give my suggestion a try despite my strong-arm tactics, and he didn’t just throw up his hands in exasperation with me, was a testament to the strength of our marriage.

  Saturday was the one day a week when many of Alicia’s private clients all came together, so the room was filled to bursting with a half dozen kids and their parents. The minute we walked in, the happiness and joy were palpable, kids singing, parents relaxed, laughter in the air. Fun was taking place. After all the time we’d spent with the dour behaviorists, awash in their seriousness and data collection along with Emily’s vocal and pained resistance to them, this was such a relief. Kids here were enjoying themselves. The whole timbre of the experience was filled with ease and delight. Even Emily was glad to be there. My shoulders relaxed for the first time in weeks.

  I looked over at my husband and saw him tapping his foot to the “Baby Beluga” song, caught up in the joy of the room. He was being won over. Thank goodness. I would have sacrificed my relationship with Tom on the altar of Emily, and our marriage would have suffered as a result.

  I’ve talked with a lot of parents of special needs kids and many of them end up divorcing—the majority, in fact—because it puts such a strain on the relationship. As a couple, you stop having the kind of social life you used to have. While I can’t speak for everyone, certainly our hopes and dreams, as well as our plans, were impacted by our constant considerations for Emily. So much of our life stood still. Everything in our orbit revolved around Emily. Parents often have to choose between their spouse and their child, a Sophie’s choice no one should ever have to make. Though Tom and I don’t always see eye to eye on how to get Emily the care she needs, our commitment to our d
aughter as our first priority has been unwavering from the start. Still, it took a toll and made for some unhappy moments.

  Other relationships were strained, too. We were not native Angelenos and had no entrenched long-standing relationships in the area. It’s different when you live as an adult in the same place you grew up, where people have known you over the course of a lifetime and you have a shared history; you can rely on them to help you out. Having no extended family in the area didn’t help. Still, we did our best to have a social life, celebrating Emily’s birthday with a party at our home with her friends from school and our own friends. We often had small dinner parties. Milestones—her graduations, Tom’s appointment to the bench—were all fully celebrated. I did my best to punctuate important events.

  Over time, though, almost all our old friends drifted away—we had so little in common with them given our new reality. Our newer friends were people in the same boat, parents also raising disabled children. Socializing even within this new group was limited. We were never able to exhale around people, never knew what Emily might do, what behavior or screaming might interrupt an event. We didn’t try to hide her; we took her to parties and other social outings, but it was stressful. I didn’t know when or how I’d have to do a lot of explaining.

  On those nights when Tom and I could get away, we tried to connect with others, looking to escape the drumbeat of our daily life if only for a few hours; still, we remained socially isolated.

  I’m reminded of Maslow’s hierarchy of needs. We were stuck at the bottom rungs of that pyramid, trying to get the basic physiological and safety needs met for ourselves and our daughter. This meant little time or energy left over for higher-order satisfactions like friendships, social outings, and intimacy with others. We were just making it on a survival basis.

  Now, at Alicia’s office, though, we both felt a moment of reprieve. As we watched Emily with the other kids in the room, we noticed that both Alicia and her partner were exceptionally attuned to the needs of the children. It was wonderful how nurturing the environment was, how these women led them in songs, in games, remaining playful and encouraging throughout. No scolding. None of the zero-sum game of be-haviorists—If you don’t do what we ask, you won’t get the treat. Everyone was playful and learning through games and amusement, not via withheld reinforcement.