Sensory processing difficulties seem to go hand in hand with autism—-is sensory processing disorder a unique condition of its own? The June 5th New York Times notes that some therapists and researchers have petitioned the American Psychiatric Association to include sensory processing disorder in the Diagnostic and Statistical Manual (DSM); these attempts have met “resistance.” What is not in dispute, the New York Times article notes, is sensory processing difficulties in autistic persons:
“There’s a real resistance to recognizing this, and you can see why, because you’re introducing a whole new vocabulary,” said Dr. Randi Hagerman, a developmental-behavioral pediatrician who is medical director of the MIND Institute at the University of California, Davis. Dr. Hagerman added, “Many of the behavioral difficulties that are being labeled today as anxiety or A.D.H.D., for instance, may be due to sensory disorders, and that forces you to rethink the treatments,” as well as diagnoses. Everyone seems to agree that sensory problems are real and disabling in children with diagnoses like autism or Fragile X Syndrome, a genetic disorder that causes social difficulties and learning delays.
Most youngsters with these diagnoses react strongly to certain sounds, textures or other sensations — or appear unusually numb to sensory stimulation. They may gag at the mere whiff of common smells, or cry out when touched. They may spin or flap their arms as if seeking stimulation (or, in some cases, to relieve pain). Children with attention deficit disorders, too, frequently appear to have unusual sensitivities.
“What do you mean by ‘sensory’ issues?” I remember asking this over and over again to the first occupational therapists and special education teachers that we met when Charlie was being diagnosed with autism back in the spring of 1999 in St. Paul, Minnesota. “It’s about sensitivities,” they replied and asked if Charlie put his hands over his ears (he did not), or seemed only to prefer certain foods with certain textures (we had just started Charlie on the gluten-free casein-free diet and I was not sure anymore what Charlie preferred to eat), or seemed to like “deep pressure.” My answer then was no.
Was I ever wrong, in hindsight.
Charlie’s sensory sensitivities are not quite what might be expected: He does not mind loud noises but shrill, high-pitched ones (especially if the source is a human voice) result in him showing signs of distress (moans and tensing of his shoulders). He likes his food crispy (French fries), cold (soy milk ice cream), slushy (watermelon), sweet and a bit vinegary (pickles), gelatinous (sushi)—he does like to sniff certain foods before eating them. His vision is curious: He has 20/20 eyesight (we take him to a wonderful optometrist who specializes in special needs children), but he has a lot of trouble tracking moving objects (balls, cars); he seems to see the outline of a thing more readily than every detail (he used to call a letter S on its side “squirrel”). After school today—understandably exhausted after waking at 3am and calling out the names of his teachers, briefly falling asleep at 7.30am, and being roused 45 minutes later to catch the beloved yellow school bus—-Charlie went straight for my bed and wrapped himself enchilada-style in his faithful old “daddy blue blanket”—a king-size navy blue fleece blanket washed and stretched so much that there is no more fleece on it. He also pulled his hands close into the middle of his body and lay on his stomach, for proprioceptive input.
I do think that Charlie is so at home at the beach because it is an all-out all-around sensory experience, sand and salt and water that moves and tugs, that provides its own pressure. Also, in retrospect, we have learned that what might be called a “sensory stoppage” moment has been the prelude to Charlie anxious and distressed; has been something that happened prior to him head-banging in the past or (now) shrieking out suddenly with a yelp of pain. “You’ll be okay,” is a phrase I am still trying to say with just the right combination of certainty, sympathy, and gentleness when Charlie’s discomfort is apparent (by 8pm tonight he was tangling himself in the sheets and tossing and turning and crying—–a 3am wake-up can do that; “Charlie, it’s okay if you don’t feel too good right now, you need sleep!” I said through some fuzzy-headedness myself). When I talk to parents of autistic children, and to autistic adults, sensory issues often arise in the conversation—-who of our kids does not love the OT, who has all the fun equipment, swings and cheese wedge gym mats and mega big exercise balls? who has not learned to be wary of fluorescent lights and to much appreciate polarfleece?
Talking about sensory involves, as Dr. Hagerman notes, a “whole new vocabulary”—and, even more, a whole new understanding of something like self-stimulatory behaviors such as my son’s running back and forth and those enchilada blanket self-wrappings. The latter might, for instance, once have been seen as a sign of him wanting to withdraw into himself and avoid the world; while I do think Charlie is, at such moments, seeking some peace and quiet, it is because the busyness, the miscellaneous stimuli of everything are too much and he needs the much more simple and straightforward sensory experience of that faithful blanket. Who doesn’t cherish a certain gently beat-up couch or cushy chair to sink into after a bad day?
More and more fleece has made its way onto Charlie’s bed and perhaps this, besides melatonin, has helped him to sleep better. He always makes sure that a snowman fleece blanket (a former speech therapist gave it to him) is spread over the sheet. At the foot of the bed is a pile of three smaller fleece blankets, two that he has had since he was a baby (and that my mom had embroidered with his name and initials). And, randomly arrayed, are a rather motley collection of sensory pillows with shimmering colors that have also been in the washing machine more than a few times.
I don’t think you’ll be surprised to know that, all sensory needs acknowledged and accounted for, Charlie fell asleep before 10pm.
To paraphrase the poet Denise Levertov, O touch and see.