Understanding Sensory Sensitivities versus “Behavior”
in Indigo Children with Autism

By William Stillman

As an autism consultant, people often ask me if I believe in behavior management; that is, a rigid program that drills children into compliance for hours on end. My response is yes, I believe in behavior management but I believe in managing the behavior of everyone around the individual with autism in order to understand their experience, because I teach from an "inside out perspective." In so doing, I don’t talk about "behavior," I talk about "communication" and discerning and decoding the function of that communication. This is particularly important when considering the sensory sensitivities of young people with autism, ADD, ADHD, OCD, and other experiences that may be grouped into the category of Indigo Children. Let’s remember, too, that many exquisitely sensitive children may not realize they’re enduring anything any different from anyone else; and some may not have the language or verbal skills to fully express what’s going on. Instead it may come out—and it’s got to come out—through communication that gets mislabeled as non-compliant, aggressive, tantruming or meltdowns.

In my opinion, and in my work as a consultant, such outward expressions of communication can be traced to one or a combination of three areas. The inability to communicate in ways that are effective, reliable, and universally understandable:

• One’s personal experience.
  
  Many people with autism are unable to speak, have limited verbal capacity, or may make vocalizations that are not understood. This does not mean that they don’t have valuable information to share about who they are and how their experience might serve to educate others. However, we must first be willing to shatter the stereotype that suggests that the majority of persons with autism necessarily have a co-occurring diagnosis of intellectual impairment, or mental retardation. We need to re-think autism in the same way that we negate the physical limitations of the person with Cerebral Palsy in favor of presuming a competence intact. Exhausting communication alternatives to speech is a must.
   
• One’s mental health experience.
  
  Living with communication limitations and discrimination manifests itself internally and outwardly in a variety of frustrations that can build and erode one’s mental health over time. Mental health is an issue separate from autism: depression, anxiety, bipolar disorder, or post-traumatic stress disorder are the most common of mental health experiences I’ve encountered. One mom, whose son was truly struggling with his autistic differences, and acute anxiety and depression, challenged me by demanding why God would punish her son, causing him to suffer with this "affliction." My response was that God was not causing her son to suffer anything; he was designed as naturally and as beautifully as God intended. Any suffering was being imposed upon him by the ignorance, prejudice, and intolerance for diversity by others who are judging his quality of life.
   
• One’s own physical and emotional pain and discomfort.
  
  The "flat affect" (minimal facial expression and vocal tone) of many autistic people may conceal their pain or discomfort. Many feel a kind of disconnect from their bodies so that their consciousness operates separate from their physical needs. Others don’t realize they’re supposed to report pain, and some don’t realize that it’s not okay to walk around in pain because that’s not the norm. A component of the inability to express pain and discomfort is sensory sensitivity issues.

The phrase "inherently gentle and exquisitely sensitive" best describes the autistic experience. The acute sensitivity that correlates to all five senses, in combination for any given individual, can cause this person’s nervous system to vibrate at a different frequency than what is considered typical. Take what you know to be true of your own experience and bump it up ten notches (at least), and you may be vibrating up in the stratosphere with the intensity of many autistics. This may predispose such individuals to perceive all things seen and unseen, and to filter out little of the environmental stimuli that the average person screens out naturally.

When someone is compelled to be exposed to overwhelming stimuli in their home, vocational, and community environments—stimuli that assault their sensory sensitivities—this exposure generates severe pain, which may or may not be expressed. How it is expressed outwardly may be misinterpreted as blowouts, tantrums or meltdowns. It cannot help but cause physical impairment, even literally impeding a person’s ability to move forward. Over time, this can also contribute to the erosion one’s mental health if relief and compassionate understanding are not availed.

We must be thoughtful, gentle, and sensitive in how we poise people with autism to be as successful as they can be, living in the community. We must ensure that they have respite at intervals throughout the day. We must be in tune to the sensory sensitivities of individuals in how they are supported. What follows is further explanation, delineated by each of the senses.

SIGHT

Visual thinkers and learners:

Many people on the autism spectrum (but not all) take in everything they see and filter out nothing. They are detail people. Many think in visual streams of pictures and movies, and can recall and replay these images in minutiae—this includes positive, loving experiences as well as those traumatic.

To demand eye contact is a myth about the "inattentiveness" of people with autism:

Lack of eye contact does not mean the child is not listening. Absorbing a vast amount of detail increases the potential for distraction. Demanding direct eye contact may cause the person to be less attentive because of the visual confusion of the human face in constant, abstract motion.

Specific visual stressors:

Many people "record" strong associative elements that are called up with visuals. Certain colors, for example, may cause distress that may be linked to disturbing experiences in the past.

Many children have an extreme sensitivity to lighting, particularly artificial lighting (fluorescent, halogen), but even intense sunlight. Exposure to this can be physically exhausting and draining. This can affect vision, causing it to be blurred; it can distort depth perception and a person’s ability to move and ambulate.

Accommodations:

Use natural lighting, filtering screens, offer visors or sunglasses or tinted (Ihrlen) lenses—although for some people the discomfort of the lighting may be preferable to that of the touch of something new against the skin.

Visual blocks, such as partitions or carrels in the workplace, can cut down on upsetting distractions.

HEARING

Unpredictable noises:

People’s voices, coughing, laughing, sneezing; dogs barking; sirens and alarms; babies or other children screaming or crying; vacuum cleaners; lights and fans humming—these sounds may be startling and assaultive. They cannot be usually be predicted. But in the home or vocational environment there can be greater control.

Children who are bothered by sound sometimes turn up the volume of their music or television. But loud music or noise perpetuated by the individual is controlled and chosen by that person. It’s their music, not someone else’s. This should not be misinterpreted as willful misconduct or inconsistency of behavior.

Accommodations:

Often something inserted in the ear canal, like earplugs, is not well tolerated. We can offer headphones or a Walkman that plays soothing music selected by the individual. In school workspace environments, classical music played softly in the background can help kids focus and concentrate.

SMELL/TASTE

Gag or vomit reactions:

Some kids react this way at the sight or smell of certain foods. Some children’s palates are so sensitive that certain foods and food textures are intolerable, ranging from soft/slimy foods (jello, pudding) to crunchy textures (celery, carrots). Resistance to foods may also be associated with memories (forced feeding of food; painful in the mouth and throat).

Food allergies:

Allergies can be culprits that induce pain and discomfort; these may include dyes, preservatives, casein (dairy), and gluten (wheat and other grains). Gastrointestinal pain can manifest itself in behavior that may not appear to be linked to digestive problems. In discerning what is being communicated, it is crucial to first rule in or rule out physical pain or discomfort.

Accommodations:

Consult with a dietician and nutritionist to assess the diet of the child and, in collaboration with that person, partner to factor in or out substitutes for the foods that cause distress. Do not get caught up in power struggles around food in the name of normalization. Children will sample other foods if and when they choose, though we should continue to make a range of choices available.

TOUCH

Clothing textures:

Skin can be exquisitely sensitive. Children might be limited in the types of fabric that their skin can tolerate, such as cotton. Clothes that feel fine to the average person might need to be washed repeatedly to soften them; tags might need to be cut out. Sometimes used clothing is preferable, since it has a long history of being worn.

Do not get caught up in power struggles around clothing, compelling kids to wear clothes they reject and interpreting their communication through rejection as "non-compliance." Listen to words or behavior that communicate things like "these clothes scratch." People with autism are often inherently blatant and direct. If someone says clothes scratch, it is because they do; figure out where and why and take measures to make it right.

Unwelcome touch:

Be respectful of people’s personal space; we so often trespass a child’s personal space because, well, they’re a child. In supporting a kid with differences, we want to feel reciprocation of the love and care we are demonstrating. It is there, but the person with autism may not rush to greet you or embrace you. The person may turn or go rigid or push you away, because your touch may cause shock waves of over-sensitizing or desensitizing stimulus. Do not touch someone suddenly or from behind or without permission.

Await the "invitation in": a subtle communication that it is acceptable to get closer. This might mean that the child who rarely makes eye contact looks at you, locks eyes, and holds the gaze. Or, you might be allowed the privilege of touching an object that has personal meaning.

Deep-pressured touch:

The same kids who do not welcome abrasive, unexpected touch may seek the weight of extra layers of clothing or self-swaddle in comforters or burrow under cushions and mattresses. Some children even ask family members to sit on them! Deep-pressured sensation is a way to maintain focus, to decompress, to reorganize before re-entering the sensory-insensitive world.

Extra layers of clothing or individually-styled weighted vests (perhaps a hunting vest, instead of a stigmatizing vest sold specially for the disability market) can fill deep-pressure needs in public.

Self-regulating activities:

A repetitive action or activity, such as twirling a string, can be soothing in its tactile or visual self-controlled sameness. (In other words, the repetition is the same every time.) Often this calming, coping strategy is mistakenly called self-stimulation or "stimming." Try using new language to describe self-soothing actions or activities. This is the proper response to such so-called "behaviors."

Recommendations for educational support staff:

Staff must be as aware of the sensory sensitivities of autistic or Indigo children.

If not, we are setting people up for failure. A checklist of sensory sensitivities needs to be developed for our kids, and reviewed regularly.

• Staff must develop courtesy and respect by removing or diminishing sensory factors they contribute.
  
  They must assess themselves: hygiene (odors like coffee or cigarettes), no distracting jewelry, no perfumes or colognes, no scented detergents.
  
  They must be sure to shop for foods that the person can tolerate, both to eat and to watch staff eat.
  
  They must pay attention to the volume and frequency of phones ringing, television, and radio.
   
• HOME, SCHOOL, AND COMMUNITY
  
  Notice floor textures in living environments, the differences in light and reflections—how a room appears at different times of day and night.
  
  Rethink community outings. Do not set children up for sensory overload: many kids cannot tolerate fireworks, race cars, malls, or amusement parks and would prefer a picnic, walk in the woods, sitting by a pond, visiting a farm or zoo.
  
  Scout environments in advance of going, especially doctors’ offices. Gather information (especially visual: photos or videos) so the new place can be anticipated. Practice prevention in the future, not intervention in the moment.
  
  Rethink traditional education environments, creating separate spaces tailored to individual needs.
  
  Low cost solutions can be strategize. Do away with break buzzers and assign the child to walk around and tell people it’s break time. Look at lighting; listen for noise of equipment, slamming doors, and blaring radios; put felt pads on the bottom of chair legs to avert scraping noises; be mindful of too many conversations. Sensitive children taking in these sensory details cannot productively work when concentrating on blocking out stimulus.
  
  Provide lots of visual opportunities to convey educational curriculum through computer technology.

Without respectful, compassionate understanding of the acute sensory sensitivity needs of our children with autism, we may disservice them by labeling outward expressions of pain and overload as severe behaviors. Please use the ideas communicated here as a starting point in your continued dialogue for best supporting the very sensitive child with autism.

© 2006, William Stillman

William Stillman is an autism consultant, and an adult with Asperger’s Syndrome (high-functioning autism). He is the author of several related books for parents and caregivers including his groundbreaking study Autism and the God Connection: Redefining the Autistic Experience Through Extraordinary Accounts of Spiritual Giftedness. His web site is www.williamstillman.com