Last week, the American Academy of Pediatrics (AAP) released a policy statement (1) on sensory integration therapies. The AAP recommended that pediatricians should not diagnose sensory processing disorder as a stand-alone diagnosis, but should refer children for an evaluation for other possibilities, like autism, ADHD, motor, or anxiety disorders. AAP also advised pediatricians to inform parents of the limited amount of research for sensory therapy and to help them set up a program to determine its effectiveness.
Stating that we should monitor and judge the effectiveness of sensory therapy seems straight-forward and logical. However, the pediatricians' statements about the policy reveal an underlying problem. Their argument that sensory issues may actually be behavioral is not untenable. But it also has the potential to cause harm. Given the discomfort, the related issues like emotions, relationships, brain science, parenting, and the risks of treating sensory issues as behavioral, we need more from our doctors. We need common-sense, evidence-based "monitor-and-evaluate" advice, but also need to consider the whole context. Consider adult autistics as a valid resource. Address the pain, emotions, and related problems of sensory issues, not just behaviors. Evaluate the whole person. Think beyond "we can't tell for sure what it is" to the science we do know about the amygdala and brain chemicals. Acknowledge research about sensory overload and genetic hard-wiring in the brain (2).
My son Jack, diagnosed with autism at 3 1/2, has received sensory-based therapy for most of his life. Jack was born seriously ill and spent his first six weeks in the NICU. In week five, he was moved to a bassinet by the NICU door. Every time the door banged, he startled awake. How I hated that door.
Today, Jack's system reacts strongly to certain sounds (zipping, clapping, for example), visuals (cloth flapping in the wind, for one), and anything wet or sticky on his hands. He also has difficulty with balance and with figuring out where his body is compared to objects outside his body. He experiences anxiety from trying to manage his environment of constant sensory input, and as a result often feels overwhelmed and exhausted. Sensory approaches like swinging are a huge source of relief for him. Other sensory approaches seem to help a little, like weighted blankets and jumping. But I couldn't see results from spinning or listening therapy, so we didn't keep these in our repertoire. So, in my experience it seems logical that parents should judge the effectiveness of sensory therapy for themselves since the current studies are insufficient.
But then a HealthDay report (3) suggested that sensory issues were, in fact, behavioral problems:
No one disputes that children with conditions such as autism can have abnormalities in their responses to sensory stimuli, including sight, taste, touch and sound. For example, autistic children may have aversions to loud noises, to certain food textures or to being touched unexpectedly, Zimmer said.When asked by phone about this issue, Dr. Susan Hyman explained her position. While sensory issues exist and are biologically based, she says, we cannot disentangle sensory from behavior. While a child's reaction to a fire alarm truly does have a biological basis, anxiety builds up around the event, so we have to teach them ways to soothe their anxiety, such as earplugs. Since we don't have evidence that an sensory solution like auditory integration training works, we have to have a complex treatment plan, and the main component should be behavior therapy.
But that doesn't necessarily mean the problem is with their brain pathways for processing sensory information, as the term "sensory processing disorder" implies.
Instead, some other issue could underlie their reactions to stimuli, such as a behavioral issue, said Dr. Susan Hyman, chair of the American Academy of Pediatrics subcommittee on autism and an associate professor of pediatrics at University of Rochester Medical Center, in Rochester, N.Y.
As another example, Dr Hyman continued, Pica, or eating non-food items, may be a result of sensory-seeking or it might also be a developmental delay, since mouthing is a way that younger children explore the world. However, she added, it might also be a perseveration as a result of autism. She suggested, we could give the child an appropriate object to chew. (Maybe the line between sensory and behavioral has blurred, but ear plugs and chewy toys are standard sensory tools.)
Pressing forward. When Dr. Hyman noted that the sensory/behavior issue hasn't been resolved yet by neurobiology, I asked her whether we've talked to autistic adults about their experiences. She noted that some case studies have been done with adults and that some autistics, like Temple Grandin and Donna Williams, have reported their sensory experiences, so it is important to look at the biological basis.
Still, her conclusion remains the same. Though sensory issues are real, they might not continue after the original sensory experience, so subsequent experiences may be behavioral. Since we can't tell sensory experiences from behavioral presentations, the treatment may include sensory therapy, but the main treatment should be behavioral.
Dr. Hyman was quick to assure me that "behavioral" does not mean "volitional," but the general understanding of the first term is fuzzier. People often use "behavioral" to mean "misbehavior." Applied behavior analysis uses rewards and consequences to identify and change problematic behaviors, so, on some level, "behaviors" must involve choice, like choosing to avoid a negative or to get a positive.
Even without resolving the willfulness problem, though, the AAP's sensory/behavioral position still raises questions. We have to ask about 1) the physical pain behind sensory issues, 2) the interrelated issues, 3) the risks of treating sensory as behavioral.
1. The Physical Pain of Sensory Issue
I am not autistic, but I have a highly active alarm system. I startle more often than other people. Loud noises or unexpected events, like seeing someone I didn't expect, startle me. It's a physical reaction. I jump, my heart pounds, my breathing stops. It isn't an anxiety problem around those particular issues. I don't avoid loud noises or unexpected events. I don't think about them any more than other people. I don't think about them at all. I just get startled.
Psychologist Jerome Kagan (4) would say I was born with a "high-reactive temperament" due to an inherited, genetically-wired, low-threshold, highly sensitive amygdala (5), the part of the brain and sympathetic nervous system that takes sensory input in and processes emotions out. The amygdala pulls in sensory information and figures out the basic emotional responses: fight, flight, or freeze. We can't change our amygdalas. They are inherited and hard-wired. We can learn tools to cope with our individual amygdalas, but it causes unnecessary stress to suggest it can change. That startle I get from loud noises or unexpected events? It is a physical jolt. My body flinches and my heart jumps. It's painful.
My son, who is autistic, has a high-reactive amygdala, too. He startles easily and he has a high-reactive sensory processing system. For example, when Jack eats or has his teeth brushed, he manages sensations that are painful, strong, and unpredictable. He describes the sensations as worse than a headache but not as bad as falling down on his knees. So, it's more than a dull ache and less than a sharp pain. It's painful.
Lynne Soraya, a writer with Asperger's, describes being hit by a car when she was nineteen while crossing a busy street. She was already experiencing overload from an earlier argument as she waited for the walk signal and stepped into the crosswalk. Unable to process her environment, she didn't see a car turning into her path until it was too late. The car hit her, causing permanent hearing damage. Lynne asks, "What is the behavior that needed to be managed there?" The problem is not crosswalk safety. Lynne followed all the rules; the driver did not. The problem with a behavioral approach is that we ignore the context of the individual and his sensory issues. As Lynne says, "just ignoring the pain, discomfort, and danger that can come with sensory integration issues is simply not acceptable." We have to consider the issue of pain behind sensory issues. To do otherwise, Lynne notes, "is inhumane."
2. The Interrelated Issues
Not only does the amygdala process sensory input, it also processes emotions. As Lynne puts it, "Emotional upset and sensory integration issues, for me, go hand in hand -- the energy it takes to deal with one will vastly affect my ability to manage the other." Because the amygdala is busy attaching emotional meaning to the sensory input it receives, it makes sense that once Lynne had depleted her emotional energy, she no longer had the energy to process the visual signal of a car coming into her path.
But there's also the emotions a person feels upon experiencing a sensory overload. The fear and helplessness (6) a child feels during a sensory overload is genuine. We need our pediatricians to consider the whole child, not just sensory or behavioral, but the stress and emotions that come with it. When we talk about a child's sensory distress, we should hear doctors validating that distress and offering ways to help our child. Not just to be empathetic, but to help us understand the brain's complex relationship between emotions and sensory processing. For example, when we provide safety, comfort, and reassurance, our calmness releases helpful chemicals (7), like oxytocin (8) and opioids, in our own brains and our child's, calming the overactive amygdala. If we ignore or walk away from a child in distress, as some parenting techniques may suggest, those chemicals are not released. The same is true if we treat the distress as a discipline issue.
It's not merely an "either sensory or behavioral" choice as the AAP position would suggest. As parent Alysia Butler reports about her son's experience, "his inability to process his world is his biggest issue" and drives his other challenges, like "social skills issues, his hyper-focus, his sleep troubles." His sensory issues are intertwined with other aspects of life.
Sensory issues, emotions, brain science, relationships, parenting - these things don't happen in a vacuum. They are interrelated, affecting and dependent on one another.
3. The Risks
Let's consider this: What if it is sensory and not behavioral? What if autistics are telling us that and we're just not listening? What will constitute proof? How would you feel if someone was trying to modify your behaviors without addressing your emotions or pain? What about the exhaustion when your sensory processing is constantly working harder?
Dr. Hyman believes that sensory-based therapies have more risk. She equates sensory therapies to a hammer and nails. "If all you see are nails, you'll always use a hammer," she explains. In other words, if all you see is sensory, you'll always use sensory therapies, and they're not always effective. So the downside to sensory therapy is that it isn't always effective, so we might be wasting time, energy, and money.
What's the risk of seeing only behavioral nails and using a behavioral hammer? From Matt Young, an autistic adult: "A reductionist approach where everything comes down to behavior fundamentally dehumanizes us in a profound way." It reduces an individual, with his own sensory, emotional, and contextual experiences to a set of behaviors. It means we risk not believing his experiences. It means we risk dismissing his emotions.
One tool that a sensory-based approach gives us is the opportunity to take the person's or child's unique perspective. It connects us to them, encouraging us to see things from their individual viewpoint. That connection encourages compassion, and a compassionate response allows a contextual, creative approach to the whole person. Sensory-based therapy means we don't ignore or walk away from sensory stress. It encourages us to acknowledge the genuine distress.
The AAP's position, on the other hand, questions that distress. It says we cannot believe an autistic's experiences. It means we might lose faith in the autistic individual, in our child, and he might lose faith that anyone would believe or understand him.
And that's a loss we can't risk.
We know pediatricians are overwhelmed (9) by lack of information about autism and autism therapies. We encourage the AAP to partner with adult autistics, parents, and autism professionals, like occupational therapists, to consider the whole child, not just individual therapies. The pain, emotions, parenting issues, and risks of treating sensory as behavioral are too real. We need more from our the AAP and our pediatricians.
Phone interview with Dr. Susan Hyman, May 30, 2012.
Email interview with Alysia Krasnow, May 31, 2012.
Email interview with Lynne Soraya, June 2, 2012.
Email interview with Matt Young, June 2, 2012.