Behavior analysis methods have proven very helpful to many young children with autism spectrum disorders, but continue to face cultural and individual challenges in communicating with the world about the approach. There is a great deal we can do when we directly communicate with parents, teachers and other professionals about our work with children, students or clients, to which I’ll return shortly. But we also face broader cultural challenges that collide with our basic scientific approach to working with children with autism, which is the topic of his article.
We are still living in an era in which some people believe that exorcism will free their family members from the grip of the devil. Many others count on angels to look out for their welfare. In a study by Rodney Stark of Baylor Univ he found 55% of Americans reported believing they are protected by angels. George W. Bush lent presidential legitimacy to disregarding empirical evidence, which won him the hearts, minds and votes of evangelical Christians as well as many others who wanted to continue polluting the environment for profit.
Discovering Your Child Has Autism: Consider a typical scenario. Would-be parents had hoped and prayed for the birth of a healthy, typical child during a woman’s pregnancy. When the baby was born, with great relief, Mom counted his fingers and toes, and was delighted with the baby’s Apgar Score. Everything looked fine. Early on in the child’s development the child’s parents had an inkling something was wrong, but tried to pretend otherwise, like whistling a happy tune as they walked past the cemetery. When the child was exhibiting no eye contact, not beginning to speak words, and exhibited repetitive non-functional routines, flapping his hands and staring at spinning objects, interspersed with severe tantrums, they were pretty sure something was amiss. Around three years of age the pediatrician delivered the terrible news that their child had autism. In almost an instant, the healthy, happy, normal child whose future they had already been planning, disappeared before their eyes. He wasn’t going to be quarterback on the high school football team, or be accepted at an Ivy League college, or open a medical practice with a prestigious clinic or get married and live with his wife and children in a white picket-fenced house in an affluent suburb. Parents began dreading the worst.
Telling Stories & Magical Thinking: In her book of essays, The White Album, Joan Didion aptly observed, “We tell ourselves stories in order to live." Parents of children with autism tell themselves stories about the loss of their normal child so they can survive, tales of alien causes and magical mystery cures. And they tell other parents those same stories because they are reassuring, and they know the pain their friends, parents of a little girl with autism, are suffering. And their friends who are parents of children with autism want desperately to believe that chelation, probiotics, hyperbaric oxygen or dietary supplements will return their normal child to them. Others are equally certain clay baths, neurotherapy, sensory integration or chiropractic alignment is guaranteed, to be 100% effective in curing autism, really, 100%, no exceptions. Deep down, of course, parents know that there is almost no likelihood their beloved typical child will be returned to them, but it is easier to engage in magical thinking than face the reality that their child has and will continue to have autism at least to some degree, so they continue to live in a world of illusions.
In her widely read book, The Year of Magical Thinking of reflections on her husband’s death, Didion wrote, “We might expect that we will be prostrate, inconsolable, crazy with loss. We do not expect to be literally crazy, cool customers who believe their husband is about to return and need his shoes." And so parents keep looking through the doorway expecting that suddenly their bright-eyed, rosy-cheeked typically developing child will enter the room asking for Mommy to give him a hug. Dad sits with his head in his hands muttering, “There must be something we can do.” That something, is too often a magical mystery cure.
Magical Mystery Cures: Especially in the first few years after diagnosis, parents cling desperately to the idea that somehow, somewhere will be a treatment that will restore the normal healthy boy who had disappeared before their eyes, the one who they thought had developed autism on the doctor’s examining table within minutes of his MMR vaccination. Of course he didn’t develop autism because of the MMR vaccine, but it is important to parents to have a specific cause to blame for their child’s condition. Blaming some crazy error, a mutation transmitted by their own genes, is far too painful to contemplate. Parent internet listserves are a mixed blessing, providing moral support through difficult daily trials and tribulations of parenting a child with autism intermixed with incorrect and often blatantly misleading information, frequently expressed with anger and seeking a target to blame, further encouraging magical thinking.
Today Occupational Therapists administer the Sensory Profile test instead of telling fortunes from cards or casting stones, and conclude a child has a sensory processing disorder and requires Sensory Integration Therapy for the remainder of his natural life, and perhaps well into the hereafter (if they can continue collecting insurance reimbursement). Few doubt that children with autism over-react to various sensory inputs, but in reality there is no credible evidence sensory integration has any lasting positive effect on functioning of children with autism. Nonetheless, nearly every child with autism receives some form of occupational therapy including sensory integration therapy. The approach is not very different from our ancestors who first settled this country and believed in witchcraft. It is much easier to believe people have souls that need exorcizing or psyches that require ever-so gently brushing, kneading or massaging, than it is to believe that the most effective course of treatment involves systematic application of applied behavior analysis principles, which seems to by-pass the soul and goes directly to how and why the child behaves so oddly.
Mental & Emotional Machinations; Each of us has a mind of his or her own, and we tend to think we are experts on that subject. The Norwegian proverb tells us the eyes are the windows to the soul. Remember when George W. Bush remarked on meeting Vladimir Putin, 'I looked the man in the eye. I found him to be very straightforward and trustworthy….I was able to get a sense of his soul." [George W. Bush, after meeting Russian President Vladimir Putin, June 16, 2001]. Nostrums that appeal to parents entirely understandable desire for a normal affectionate bond with their child, called social emotional relationship therapies, are incredibly appealing, whether they are effective or not. Not only are they appealing in principle, they are enjoyable to parents who are professionally encouraged to engage in spontaneous playful, enjoyable activities with their child (which they already wish they could do), which create the illusion that they are developing a normal parent-child relationship. It’s fun to play patty-cake and give your child a hug, though it generally contributes minimally to overcoming his core autism symptoms.
Vulcanesque Language: Behavior analysts have a problem with the language used in describing our procedures. When someone we love has had an especially difficult day, do we say, “Tell me about your schedules of reinforcement and punishment?” or “That sounds awful, You must feel terrible. Tell me what happened.” Many of us in the field of behavior analysis have a compulsion to prove our scientific bona fides by using off-putting technical jargon when talking to parents, teachers and professionals from other fields.
Consider for a moment how physicians typically talk with their patients or parents of child patients. They say things like: “So she’s having lots of pain?” rather than, “Looks like she’s hyperalgesic?” “You must have caught a bug,” instead of, “You have viral nasopharyngitis.” “He’s sick to his stomach and vomiting,” not “Looks like he has gastritis.” We seem to be intent on convincing parents, teachers and others who will listen, that we attended the Star Fleet Academy along with Spock, which accounts for our resulting Vulcaneque communication skills. When talking with parents, teachers and other professionals, we insist on saying things like: “Emitting mands,” instead of “making requests”, “Motivational operations,” instead of “Make sure he’s hungry.” Or “Extinction,” instead of “planned ignoring.”
“How Do You Feel?” Observeables are essential to us, though they are largely irrelevant to most other people with whom we speak, especially parents and media reporters. We tend not to ask parents or children how they feel. We prefer to ask them what they did or will do. We say, “For extinction to work, it’s important that you ignore Johnny when he’s having a tantrum.” rather than “How do you feel about ignoring Johnny when he’s having a tantrum?” The implication of the latter is that you understand it is going to be difficult for Mom, and you can put yourself in her shoes. We understand her perspective. We should commiserate with how difficult it will be, especially in the beginning, but reassure parents we will be by their side, and though it’s tough, we’re confident she can do it.
Graphs Versus Quality of Life: When we tell a reporter how well the kids we are working with are doing, we seldom indicate how wonderful that is for the quality of life for child and her family, and how terrific it is that they could all go camping together for the first time. We show the reporter graphs of the percent of goals reached as though we were presenting a scientific talk at a conference. No wonder they question what planet we’re from. The Floortime therapist waxes eloquent about the joy on Mom’s face and the laughter from the child with autism, as we point at the slope on a graph.
We are eager to show parents the amount of improvement in spontaneous requests, and the decrease in crying over the first few sessions, but don’t realize that all they see is that their child still has autism. Their goal is to make the autism go away not change the line on a chart. In talking with parents, I find it useful to use analogies from physical medicine, like Gabby Gifford’s painstakingly slow recovery from the gunshot wound to her head. By reminding parents that a fuller life for their child is like Gabby’s recovery, it is the endpoint way, way down at the end of a long pain-staking road that requires perseverance and work every step of the way.
Effortfulness of Treatment: Ignoring a child while he or she is crying is contrary to most parents’ concepts of being a good parent, regardless of culture, but we ask the families we are working with to do exactly that. It feels much better to pick your son up and give him a hug, even if you know intellectually that is probably a mistake. Parents hate it that they know they are doing exactly what they should not be doing, but they do it anyway. We need to help parents come to the conclusion we are helping them do what they want to do, not what we want them to do, and that we will be there with them to help them through that trying time.
The things we ask parents and teachers to do as part of behavior analytic intervention are extremely demanding and time consuming. We ask teachers to ignore a child’s screaming and throwing her pencil when the teacher makes a request… that’s easier said than done. “By the way, be sure to keep your data sheet up to date.” We ask parents to practice repeating a conversational exchange with their child with autism at every meal, three times per day. That can be very difficult when there are other kids vying for attention and parents need to talk about who is taking their daughter to soccer and their son to piano lessons.
It’s much easier to give a pill twice a day, or take their child for sensory integration therapy twice a week, than day in and day out follow the prescribed behavioral intervention plan from awakening to bedtime. The RDI therapist comes twice a week for an hour and shows Mom how to emotionally bond with her daughter, which is lots of fun through playing games, giving kisses and hugs, and Mom is absolutely sure its helping with her daughter’s autism symptoms. Actually, it’s helping Mom feel she is being a good mother and probably not hurting her daughter much, though it may make her tantrums worse.
Many of the things we ask families to do don’t fit in very well with their daily routines, which can be frustrating to families. They may be asked to set aside 8 or 10 three-hour blocks of time over each week for therapy, which is often very difficult for families. In the end, they usually feel good about having done so, but they need to know we understand the sacrifice they are making.
Summary: We are facing cultural challenges exacerbated by the growth of the Religious Right in America. The fact that major political leaders share those beliefs and cater to the antiscientific views of many of their constituents is a constant test of wills. Parents of children with autism often engage in magical thinking because it is too painful to do otherwise. They need a solution that is consistent with their world view and the personal pain they are experiencing. We need to stop contributing to these problems by the language we used and failure to express our understanding of parents’ perspectives. When a brain-injured physical therapy patient finally walks and talks, laughs and gives her kids “high fives,” the physicians and nurses who cared for her and oversaw the years of laborious physical therapy, never discuss the gains in technical medical terms. They do so in the language of humanity. We should do the same.
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