Sensible Accommodations for Sensory Issues

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.

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    • laurentius-rex

      What really needs to be abandoned it the “triad of impairments” sensory issues were included in the first diagnostic descriptions of autism, they deserve to be back in there as they go unrecognised, undiagnosed and unaccomodated otherwise.

    • Niksmom

      Oh so true, Larry. I have ben saying to my son’s school for the past year that he needs a sensory diet but they haven’t done a darn thing yet. Now, with the official ASD diagnosis, I will ave (hopefully) more leverage to use. Niksdad and I see sucha difference when Nik gets the right types and amounts of input.

    • Caroline

      Thank you for this post Kristina.

      ‘Sensory Issues’ are my child’s biggest difficulty right now, and my child has always responded well to sensory integration therapy. When we first started, I thought it was a little new-age, but it really helped more than anything else. (besides anti-seizure medication! and a few good teachers!)

      Without the specific therapy for 3 years, my child is having a lot of trouble where he used to go with ease.

    • Marcie

      I’ve been reading Grinker’s “Unstrange Minds” in which he explains that as the DSM progressed, they tried to use more and more observable behavior and dealt with the actual causes less and less. I can understand trying to get away from abstract Freudian-psychoanalystic causes, but I think maybe it’s time to “get back to the basics”, i.e. the root causes. Maybe that’s why talking about sensory issues is causes such distress, it could cause a paradigm shift back to thinking about the person’s experience. Psychology likes to think of what it does as more objective than that (even when it’s not).

    • Kristina Chew, PhD

      I have to include the weather as a big player in Charlie’s sensory experience—–my parents live in the Bay Area in northern California and that’s a wonderful climate, no humidity, temperature stays 40-80 degrees, near the water: A combination that suits Charlie well (and myself, too—but Charlie still does not always think to wear shorts on a hot day or to put on jacket on a cold one).

      Thanks for the insight about “cause,” Marcie—–Caroline, I thought some of the treatments (brushing….) were kind of “new agey” too at first; now they seem so much more like common sense, and remind me of how Charlie is very attuned to his surroundings, just not always able to explain this. I don’t think of these sensory needs as “impairments” but as signs of Charlie’s differentness (neurological, etc.)—-and I have to say, who doesn’t feel like lying down on the couch after a long day?

    • mcewen

      Sensory issues are part and parcel of the diagnoses as far as I’m concerned. Huge, complex and we’re still learning.

    • Leila

      I wish they had more occupational therapists that specialize in feeding issues. My son can eat a variety of consistencies and likes different flavors, which can be sweet, sour or salty, so it’s hard to know what makes him reject some foods (many times in school he’ll skip lunch altogether). My husband thinks he dislikes bland food, but then why does he like to eat plain rice? It is one source of stress for him and the whole family, and I think ABA therapists don’t have a clue about this issue. We’ve been working with ABA people who were supposed to be specialized in feeding programs and so far it’s been a complete failure.

    • Joe

      Sensory issues are a big deal. Some sounds really bother me, most of them loud grating sounds, but those that would just bother a non-autistic person is painful to me (finger nails on a chalkboard don’t just send chills up my back, they bring me to my knees doubled over in pain.) I have worse issues with light, I’m happiest in Walmart if I have my sunglasses on IN the store.

      My son is more sensitive to sound than I am and slightly less sensitive on light. So even though I understand, each of us is different.

      I’ve gotten accomodations at work for sensory issues. It’s not mentioned on my diagnosis, but it’s considered common with ASD and no one has had an issue with that being why having a bright light in my face makes me unable to work because of the pain.

    • Lolasmom

      Hmm… this is an issue I keep revisiting, because Lola seems to have few sensory issues. Nothing really seems to make her anxious (except social situations where I leave her). I mean, she screams when I brush her teeth or hair, but she is FINE when she does it by herself, which makes me think it is less a sensitivity issue and more an independence issue (which follows Lola’s personality!)
      The most I can come up with is that she is orally hyposensitive, needing to chew and liking intense flavors, and seems to need a lot of physical activity. (I don’t really understand proprioreceptive issues, so I don’t know if that applies.) Can you be autistic without having sensory integration problems?

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    • Marcie

      “Can you be autistic without having sensory integration problems?”

      I don’t think so, simply because, as has come out in recent studies, “autism affects the whole of the brain”

      That is, the various parts of the brain are not integrated like they are in neurotypical individuals. A person can have aspects of autism, like sensory integration dysfunction, because sensory integration is control by specific parts of the brain (like the parietal lobe and cerebellum). Someone with “whole brain” non-integration would necessarily have sensory integration dyfunction, at least that’s my going theory.

    • Marcie

      What I meant to say was “A person can have aspects of autism, like sensory integration disfunction, without having the rest of autism…”

    • Caroline

      I agree Marcie – and I think autism is currently being overdiagnosed because it is easier for school districts to sort and classify children by this umbrella…ultimately though, it can harm some individuals that are misdiagnosed as being ‘on the spectrum’ where some teaching styles are not appropriate.

      People should not have to get a ‘harsh diagnosis’ in order to be eligable for services.

      I also think segregation of ANY individual from the ‘NT’ population is wrong no matter what the diagnosis.

      Ralph James Savarese and his wife and son have the right idea and message that needs to constantly get out there in this cynical world…the PR agency at Autism Speaks could learn a lot about the right thing to do from listening to this family.

    • Jannalou

      Sensory processing differences are common in ADHD and other developmental disorders, as well. I think, unless people are willing to pull all of those other disorders into the umbrella of either PDD or ASD, it is best to keep SPD as a separate diagnosis. But that’s me – an ADDult with various sensory processing differences and coordination problems.

    • Marcie

      “I also think segregation of ANY individual from the ‘NT’ population is
      wrong no matter what the diagnosis.”

      I disagree, to an extent. It’s good for kids on the spectrum to be around NT kids IF they are understanding. But sometimes the best thing you can do is keep them away from other kids. Of course, there’s the issue of bullying. Hand in hand with that is another issue: when I’m around people who are somewhat like me, even if they’re technically nt, I can emulated that to a certain degree. If I’m around people who are on the opposite side of the human spectrum, then I just get confused and don’t know what to do.

      But then I’m coming from the exact opposite perspective you are. That is, I had NO diagnosis growing up. I was expect to just “deal with it”, no matter what “it” was.

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    • Bonnie Sayers

      Good post. Sounds a lot like my son Matthew. I too can remember the first visit to an OT for Nick in 1998 at the childrens hospital in Los Angeles and not knowing any of the terms. I say sensory issues so often now and no one ever asks what that means.

      I am looking forward to the post conference with Dr Stanley Greenspan on sensory processing disorders that will take place online in May.

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    • http://autismvox MINDY

      Hi Caroline – I wanted to ask you about the anti-seziure drug your child takes for SPD. I am a physical therapist with 23 years experience in pediatrics, many of those doing sensory integration therapy. In fact I am probably a SPD info junkie. I have seen so many success stories and have helped so many children just by being able to tell their parents I knew why their child did the things they do and what they could do to help them feel and fit in better. I now have a daughter who is 4 1/2. She was adopted at 10 months. She is legally blind, drug exposed and very smart! However, she has significant sensory modulation problems and behavior issues that we struggle with daily. I also have a 12 year old son (biological) with SPD, but much more mild and managable. Long story- sorry, anyway, I feel like I’ve tried most of the treatments recommended for SPD, including diet changes, listening therapy, and ALOT of vestibular and proprioceptive stim (even brushing which I don’t really use much). I have struggled for a while with the idea of trying medication, but I feel like sensory integration therapies alone are not enough. We tried Abilify this summer, It just made our little girl tired and weepy, so not a good trade. The behaviors we deal with are primarily emotional outbursts, hitting, screaming, biting, kicking… .Poor self calming, difficulty with transitions, poor peer interactions, very low frustration level… . Please let me know what your child takes. I have been thinking about asking the pediatrician for an anti seziure drug, as I’ve heard this is sometimes a good choice. Thanks for listening!

    • Kassiane

      I’m not a parent but an autistic/epileptic with massive sensory issues.

      Topamax is freaking excellent for mine, I’ve noticed. Except at the wrong dose it made me really out of it.

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