Counseling Today, Features

Don’t Touch Me

Stacy Notaras Murphy April 1, 2011

Susan* can’t remember not being sensitive to tactile stimuli. Ever since she was a child, she has had aversions to many things, including light touch, the feeling of rain on her skin, being breathed on, tight clothing, and jewelry or hair brushing the back of her neck. “I was never a warm, cuddly person because of my difficulties with touch, and my family gave me endless grief about my short, stiff hugs,” she says. “But in general, on my own, I had coping strategies and just avoided situations that made me uncomfortable.”

It wasn’t until Susan’s young son was diagnosed with a sensory processing disorder (SPD) that she pieced together these bits of her history and began viewing them as parts of a nameable condition. With her son now in occupational therapy and developing a treatment plan, Susan’s knowledge of the SPD spectrum has expanded greatly. Asked what she has learned through personal experience that others cannot discover just by reading a book, she replies, “The problems that are often touted in children don’t go away with adults, and they can have a serious impact on interpersonal relationships and, therefore, happiness.”

By way of definition, individuals with an SPD might have trouble understanding, processing and reacting to information received from their senses. These individuals often feel their senses are unreliable or inconsistent, making basic tasks such as dressing and walking difficult. SPDs can make daily organization challenging, and they can lead to low self-esteem, anxiety and depression. Recent emphasis on diagnosis in childhood has raised the profile of sensory integration issues within parenting communities. SPDs often are recognized in tandem with other diagnoses, particularly attention-deficit/hyperactivity disorder and autism, but some people experience the disorder without a comorbid condition. Although the American Psychological Association does not plan to recognize SPDs as part of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the organization has requested further study on the topic.

It stands to reason that children with SPDs grow into adults with SPDs. But when children are not diagnosed, and do not follow protocols that include occupational therapy, they often reach adulthood without a definition for their struggles. Lacking effective coping strategies, they may find themselves in a counselor’s office facing depression, anxiety, addiction or other complicating conditions. Experts agree that SPDs can present more as a mental health issue, leading to misdiagnoses ranging from generalized anxiety and phobias to obsessive-compulsive disorder and bipolar disorder. Armed with an understanding of how SPDs present in adult populations, counselors can help these clients find more comfortable ways of living.

“I think that most people with SPD will assume their problems psychological and therefore seek either psychotherapy, medication or both,” says Sharon Heller, a developmental psychologist and author. “Few will know that SPD drives their behavior because it is generally considered a dysfunction of special needs children when, in truth, probably as much as 30 percent of functioning adults suffer from it to some degree. The more you learn about SPD, the more you see it all around you, manifested as disorganization, clumsiness, messiness, spaciness, irresponsibility, low motivation, underachievement, distractibility, social awkwardness, inappropriate behavior — the list goes on.”

What it looks like

Heller herself struggles with “sensory defensiveness,” which falls under the SPD umbrella. “I knew my over-reactivity to the world couldn’t be from just stress and anxiety because I had little to no control over it, and I hadn’t always been like that. It came on gradually, following head trauma. But I didn’t know why it was happening or what to do about it, so I built a cave and crawled in. What a sigh of relief when I found out it was an actual syndrome called sensory defensiveness.”

Heller began a “sensory diet” that included the deep skin brushing technique, proprioceptive input into her joints, exercises for her balance system and therapeutic listening, used in combination with cranial-sacral therapy. Her symptoms abated. “Today it’s mild and presents relatively little interference in my life,” she says. “As a writer, I knew that I had to spread the word to other adults with this relatively unknown syndrome who too were in the dark.” Her book Too Loud, Too Bright, Too Fast, Too Tight details the sensory defensiveness experience.

She explains how an adult client with an SPD might present in therapy: “If you have a client who is uptight but also ‘off-center,’ sensorimotor issues may be fueling their anxiety and depression. … Sensorimotor problems — [such as] low muscle tone, clumsiness, spaciness, over/under-reactivity to sensation, hyperactivity, attention deficits, learning problems — make ordinary activities effortful and interactions harder than they are for others. Succeeding in learning, relationships, careers, sports and life skills is a constant challenge.”

“Constant failure and difficulty in coping with day-to-day life causes stress and anxiety, and [in] not knowing why you fail to meet up to standard, you feel weird, stupid and inept,” Heller says. “Further, constant failure results in learned helplessness — ‘Why bother? It won’t work’ — and you get depressed.”

Heller gives an example of how this can play out. “Some people with SPD have great difficulty losing weight because they have low muscle tone and, uncoordinated and clumsy, find moving an effort,” she says, adding that exercise is not pleasurable for these individuals and physical activity has likely caused them much embarrassment in the past. “When they do lose weight, they feel less connection to their bodies. You need muscles for body awareness — to feel your body’s ‘edges’ — and, lacking them, you need extra weight to feel grounded.”

“[Overweight] and lacking control over your life, you feel depressed and go to therapy or take antidepressants,” she continues. “While this may help take off the edge and help you to cope better with life’s slings and arrows, it doesn’t cut off the head of the snake, and the central sensorimotor problems remain. If, on the other hand, you knew you had SPD and got therapy to increase body awareness and coordination, you would more willingly engage in exercise. This would give you greater control over your body, and the whole negative feedback cycle may be interrupted.”

Christopher Auer, a special education administrator in Denver and an affiliate faculty member at Regis University, didn’t recognize that his sensory sensitivities might be part of something larger until he got involved in the SPD community because of his young son’s diagnosis. “I was at a conference with [noted SPD researcher] Lucy Jane Miller, and I was presenting. I apparently appeared overwhelmed, and she asked, ‘You know SPD is genetic, don’t you?'”

“I think there are a lot of adults who don’t have a diagnosis but who have developed ways of being,” Auer says. He has learned to “disappear” into his smartphone when he feels overwhelmed so he can get grounded and check out for a while. “A better way would be for me to name the feeling and ask for space to tune out, then I can come back and interact with someone. It’s developing that communication piece so it’s clear for everyone. That’s the same for kids as well. You want them to recognize what their coping skills are, but you also want them to be able to come back and interact in a social way, to develop the inner resources or inner pool of energy so they can function more readily.” Auer and his wife Michelle, an occupational therapist, have written a workbook for kids with SPD, Making Sense of Your Senses.

Kristina Taylor is a developmental disability specialist and American Counseling Association member in Chicago. She became familiar with SPDs through her work with individuals with developmental disabilities while she was pursuing her master’s degree. “The longer I worked with people who had sensory integration or processing issues, the more I came to understand aspects of the disorder and how making small accommodations can really help,” she says. “I now work in the developmental disability field and see these issues in most of my clients.”

She notes that these issues present in many different ways. “For instance, if the therapy room or their work environment is too light or dark, too hot or cold, if things are not arranged in certain ways, or even if I am wearing my hair a different way that day, it can throw off their ability to engage in what we need to do because it takes more effort to process this input.”

As a result, Taylor says many of her clients have unconsciously developed their own coping strategies for dealing with their individual symptoms. “Many individuals I work with wear headphones or other things over or in their ears while working, riding the bus or being out in public. It helps to decrease the noise input they have to process. I have also seen individuals carry some small item they can squeeze to get needed sensory input when they are having difficulty processing their environment. Wearing certain types of clothing is another coping mechanism. Shutting their eyes when they are overwhelmed with input is common also, or just disengaging from their surroundings until they do not feel as overloaded.”

Cindy is a mental health clinician in California. She struggles with sensory processing issues, such as a sensitivity to artificial light and turbulence and consistently feeling that her body temperature is too warm, but she had not heard of the disorder until two years ago. “I thought I just had strong likes and aversions and adapted my life [and] surroundings to accommodate these things,” she reflects. “It was quite by accident that I stumbled across this disorder through a child I worked with whom had been diagnosed in the early 2000s. I looked it up on the Internet, and suddenly I found myself relating a little too much to some of the things that were mentioned.”

“I believe that unless I was speaking to a mental health professional, I would have no chance of relaying how I experience my world,” Cindy continues. “A general practitioner would probably send me directly to a neurologist for an MRI or make sure I got medicated.”

Today, Cindy never uses the overhead fluorescent lights in her office and often wears noise-canceling headphones when her officemate becomes distracting. She keeps a cooling fan near her desk or tries to sit near air-conditioning vents. At home, she avoids television, sleeps with a fan on, wears earplugs at night and often has ambient music playing.

On the positive side, Cindy believes her sensitivity has made her a more intuitive counselor for small children. “As my knowledge of SPD has grown, I have been able to make more and more sense of the behaviors I see in the classroom,” she says. “I think it’s probably easier for me to walk into a classroom and notice when the environment is too stimulating, loud, cluttered, boring, etc.”

“We had a child in our program who wouldn’t use the bathroom and would completely melt down every time the class had potty breaks,” she says. “I walked into the bathroom when the class was in there, and the sound was completely overwhelming. Imagine a completely tiled, six-stall bathroom filled with 15 3- to 5-year-olds! No wonder she didn’t want to go in. Sure enough, the teachers found that when they took her on her own, there was no issue. Sometimes, it helps to speak the language.”

In the counseling room

In addition to being diagnosed with Asperger’s syndrome, Karen has central auditory processing disorder, which is part of the SPD spectrum and impairs her ability to respond in conversations. She also has difficulties with tactile stimuli, such as cold temperatures and food textures, as well as strong odors. She describes the experience of walking through a department store perfume aisle as “all the keys of a piano being played at the same time.”

Karen’s journey toward understanding herself has included trips to her primary care physician, a speech therapist and an occupational therapist. “I’ve worked with counselors and other providers in psychiatry because from my teens, I’ve been treated for depression, anxiety, etc. I spent a lot of years in therapy and seeing doctors. The therapist was great and helped me think about some of my sensory issues.”

“Counselors need to work with any of their clients to try and address root causes of their suffering,” Karen advises. “It’s not always because of a simple chemical imbalance or because of negative thinking patterns. It’s not the case that the person can articulate what is really going on.”

“SPD is challenging to uncover in a case where someone comes in because they’re ‘feeling bad’ or clinically ‘depressed’ or ‘anxious’ and it’s not clear where the stress is coming from,” she says. “SPD can create other kinds of stress — social, executive functioning, which can lead to job stress, financial difficulties, alienation. It’s not enough to say, ‘Make friends’ when the person is overwhelmed by the sights, smells or sounds of other people in places where people normally spend time with others.”

Karen recommends that counselors “spend time with the person trying to understand their visceral experience of the world. If the setting permits, go out into the world with the person and explore what that is like. It may not just be the depression keeping a person from the grocery store.”

SPD treatment plans often include collaboration with occupational therapists, physical therapists and speech therapists, and Taylor says her experience working with these professionals has been highly positive. “I am not sure if this is typical or if I have just been very lucky, but many times these specialists have been very willing to work together to implement goals and sensory plans. Many work to increase independent living skills and vocational skills and help the clients work on making plans in advance for when they need sensory breaks.

“I have worked with these specialists to develop sensory rooms in homes, schools and workplaces, and to develop sensory diets, including meeting needs for deep pressure, wearing weighted vests, using weighted blankets, taking movement breaks, etc. I have found them all to be a very useful and integral part of a holistic therapy approach and full of great ideas and resources.”

Taylor notes that counselors can play an important role by advocating for SPD clients outside the therapy room as well. “I have written letters to employers to ask for sensory accommodations or to just explain certain behaviors that they often think are odd. I have written letters to state representatives to advocate for increased social services for these individuals, and I have protested at rallies. I also feel that just listening to [these clients'] needs and trying to understand as much as I can is a daily way in which I advocate.”

Taking time to understand

Roxanne Nichols is an ACA member and senior staff clinician at Boise State University. Despite her training, she admits she was only “minimally familiar” with SPDs as a whole until this past summer. That’s when her daughter, after years of struggle and being diagnosed with bipolar disorder, was referred for neuropsychological testing.

“My daughter has a sensory processing disorder called nonverbal learning disorder,” Nichols says. “As I began to read about it, I recognized almost all of the symptoms in her, whereas [the bipolar diagnosis] kind of fit, but never fully grasped all that she had going on. And bipolar is supposed to be treatable with medication, but that didn’t seem to alter her much, except for the sedation.

“Since her most recent and I believe accurate diagnosis, she has been off medication completely and with great success. We have educated ourselves on how to more effectively communicate with her. I would suggest [to counselors] that if a client presents with symptoms that have you shrugging or the symptoms seem to have atypical patterns, think outside the box and outside the DSM.”

Noting the paradigm shift that comes when a family member is diagnosed with an SPD, Nichols says counselors ought to ask clients questions that might point to the disorder. For example: When did you learn to ride a bike? How do you organize your room? How well do you handle transitions?

Taylor says counselor education programs could do more to educate students on sensory processing issues but adds that many related fields are also lacking knowledge. “I have several counselors and psychologists who are close friends, and since they do not usually work with clients with sensory processing issues, they don’t understand the needs or aspects of the disorder,” she says. “I have discussed aspects of cases, ensuring confidentiality, with them for consultation purposes [and found] out they do not understand why someone would flap their hands, bang their head or need deep pressure to help regulate themselves. I do not think most counseling programs offer enough training on these issues either. I know I never learned about a sensory diet in my [master's] program.”

Taylor suggests that all individuals can be classified somewhere on the sensory spectrum, which might be a helpful mind-set for counselors to adopt. “Some of us can regulate our sensory processing systems well and do not need many coping mechanisms, while others need more help and support. However,” she says, “we have all had experiences when we were overwhelmed with sensory input. We can take how we felt in these situations and use that to better understand what daily life is like for those with sensory processing disorders. I think counselors can apply many of the tools and resources used with [the SPD] population to any client.”

Heller laments the lack of SPD information available beyond that which targets children with special needs, so she is writing a new book specifically for adults with SPDs that will be published next year. She notes that many online communities provide support and information on the topic and encourages counselors to spend time educating themselves. “I believe the role of the counselor is to help the client cope with the psychological sequelae that accompany this dysfunction and to give the person guidance and hope, especially because many, if not most, have been crippled by learned helplessness and feel too defeated to take steps to improve their condition,” Heller says.

On the whole, Cindy is optimistic about the counseling profession’s ability to help those with SPDs. “I believe that counseling is moving toward a more holistic view of the person, and not just in the social work way. The systems that support a person are critical, but just as critical is the way a person perceives their experiences and environment — and that is through the senses. Your clients may not even know they have SPD, but as mental health clinicians, we can help them explore the differences between how their senses bring information to them and how that can help or hinder them.”

“Become familiar with SPD and the work that occupational therapists do to assist those who are struggling with SPD,” Cindy advises counselors. “Support your client in becoming their own advocate and in finding coping skills to help them become more successful in their lives.”

At the same time, Cindy says, counselors should not assume that these clients automatically need, or necessarily want, to function just like everybody else. “Those of us who have SPD and don’t know it don’t even think we’re perceiving things differently than other people. But if we donotice, we just think we’re ‘quirky’ that way, or lazy, or whatever we were called growing up because of the sensory differences we had. Every single person out there has some sort of sensory issue. That’s normal. It’s when the processing of sensory input becomes interruptive to quality of life or success in school or employment that it should become a focus of treatment. Don’t diagnose everyone. And don’t make everyone go to an occupational therapist for treatment. Some of us are very attached to our quirks. … They are part of what others love about us as well.”

Note: *Some names in this article were changed by request.

Stacy Notaras Murphy is a licensed professional counselor practicing in Washington, D.C. To contact her, visit therapygeorgetown.com.

Letters to the editor: ct@counseling.org

 

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