Chapter

Dr. Tony Attwood’s Advice on Living with Sensory Issues

At last, the DSM-5, a clinician’s textbook that defines Autism Spectrum Disorders, has included “hyper- or hypo-reactivity to sensory input” as a diagnostic criterion for ASD (American Psychiatric Association 2013). Thus, sensory sensitivity will be evaluated during a diagnostic assessment, recognized by clinicians and academics as one of the defining characteristics of ASD. This will subsequently lead to the development of conceptual models of sensory sensitivity and effective treatment.

To date, we do not really know why sensory issues occur in association with ASD. However, we do know that this characteristic tends to be a life-long issue. The good news is that adults with an ASD have greater opportunities to create and maintain a lifestyle that minimizes experiences of sensory sensitivity, and greater maturity enables the person to temporarily endure the experiences, rather than have an irresistible need to escape from them.

It seems that all the sensory systems can be affected in ASD, and often the person has various levels of sensitivity in not one, but several sensory systems. The most common is auditory sensitivity, with tactile, visual, olfactory and taste sensitivity often co-occurring. There can also be sensitivity and a disturbance of proprioception (a sense of the position of the body using information from internal signals) and vestibular systems (sense of balance and orientation). It is not simply hypersensitivity; there can be hypo-sensitivity, especially a lack of perception of, or reaction to, some sensory experiences such as pain and temperature. There can also be temporary fluctuations in sensory perception, such that the same experience is perceived as less or more intense from day to day or hour to hour; fragmented sensory perception (focusing on parts and detail rather than wholes); and sensory agnosia (difficulty interpreting from which sensory system a sensory experience comes). There can also be a desire to experience more intense sensations that might be unpleasant to neurotypicals, such as the taste and feeling of exceptionally spicy or “hot” food. The reactions to such sensory experiences may be perceived as eccentric by neurotypicals, but are a recognized characteristic of the sensory profile associated with ASD.

ASD is also associated with synaesthesia, or cross-sensory perception, such as seeing images in association with specific sounds, and prosopagnosia (face blindness, that is, a difficulty recognizing people’s faces). There can also be an association with Scotopic Sensitivity or Irlen Syndrome, a visual perceptual dysfunction that affects reading abilities by distorting print and the visual perception of the environment. Thus, sensory experiences can be extremely intense, confusing and frightening for those who have an ASD.

Strategies to Cope with Sensory Issues

The Aspie mentors have provided several personal strategies for coping with sensory issues in this chapter and you may find that you benefit from having an assessment of your sensory profile by an occupational therapist or psychologist, which could provide valuable information on which of your sensory systems are affected. You may also find it helpful to read literature (see the end of this chapter for suggestions) on the sensory sensitivity associated with ASD.

Occupational therapists have designed assessment instruments for the sensory sensitivities associated with ASD, and often use sensory integration therapy for both sensory sensitivity and difficulties with sensory processing. Irlen lenses, developed by Helen Irlen, can also reduce visual distortion.

AVOIDING OR TOLERATING AVERSIVE SENSORY EXPERIENCES

As an adult, there can be greater opportunities than as a child or adolescent to create a lifestyle that minimizes the risk of encountering specific unpleasant sensory experiences. You will need to explain to others why you are perhaps choosing to engage in such eccentric avoidant behaviour, but there will be greater understanding and support when the neurotypicals around you know why you are avoiding certain situations. Most neurotypicals will not have experienced personally the intensity, pain and distress that you experience because of your sensitivity, but may have greater understanding and sympathy if you make reference to the sound of fingernails scraping down a blackboard—many people hate this. Almost all neurotypicals find some sensory experiences mildly unpleasant; try asking them which sensory experiences they find difficult to tolerate, and then explain how for someone with an ASD, there are many more sensory experiences that are perceived as unpleasant, and to a much greater degree, than there are for neurotypicals. The problem in ASD is that the distress or pain is so much more intense, and is often in response to common daily experiences. This should elicit more compassion than the somewhat heartless comment, “Just try to ignore it.”

The good news is that with maturity there can be greater ability to temporarily endure the sensory experience, using cognitive strategies such as reassuring self-talk (“I will be out of here in ten minutes,” or “I must be brave and try to keep going”), which can inhibit the impulse to escape. Mature adults with an ASD may also have the assertiveness to ask for changes in environmental experiences, for example, requesting that the volume of music in a store or restaurant be turned down, or to be seated in a secluded area of the café.

REDUCING THE INTENSITY OF THE EXPERIENCE

Sometimes the intensity can actually be reduced. For example, in the case of auditory sensitivity, you might choose to wear industrial noise-reducing headphones or earplugs, or listen to music using earphones. This strategy can camouflage the external auditory sensory experience in community settings, such as supermarkets or shopping malls.

Tactile and visual sensitivity can be reduced in some cases by choosing clothing carefully. The problem can be the uncomfortable feeling of the fabric on skin, and the scratchiness of labels and seams; but you may also find bright patterns and colours visually overstimulating. People who have an ASD may prefer to choose subdued colours, and often wear clothes that are all black; this also solves the problem of the colour coordination of clothing. However, a problem for women with an ASD is the expectation by neurotypical women that one should be fashion conscious, which often involves wearing uncomfortable and impractical clothing that may be brightly coloured or highly patterned. It may be more important that you feel comfortable rather than fashionable.

ALTERNATIVE SENSORY EXPERIENCES

It may be worth considering having with you a portable “repair kit” of alternative sensory experiences that neutralize specific sensory sensitivity. For example, have a scent that you perceive as very pleasant in a spray bottle, and when you experience olfactory sensations such as someone’s body odour when using public transport, spray a tissue with your chosen scent and inhale it as an antidote to the obnoxious olfactory experience. The sensory repair kit could also include a good book or a small computer game console that could act as a temporary distraction, mesmerizing enough to block out specific sensory experiences.

A common characteristic of sensory sensitivity for those who have an ASD is an aversion to fluorescent lights, which may appear to flicker, and downlights in ceilings that provide too intense a level of artificial light. An alternative is to ensure greater access to natural, but not too bright, light, or to wear a baseball cap or visor indoors to stop the effect of downlights on visual perception.

Strategies that Do Not Seem to Work

Neurotypicals may assume that if you have repeated exposure to an unpleasant experience, you will gradually habituate to it and it will be perceived as less intense. They may also believe that if this does not work, you should just try to ignore it. Neither strategy works in reducing sensory sensitivity; it is an interesting characteristic of ASD that repeated experience of an aversive experience (desensitization) does not lead to habituation, and if an experience is particularly unpleasant, it is almost impossible to ignore. You need compassion and cooperation to help you either avoid or tolerate sensory experiences.

REFERENCE

American Psychiatric Association (APA) (2013) Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. Washington, DC: American Psychiatric Association.