Moya Kinnealey, Ph.D., OTR/L
I read Tammy Cook's article with great empathy as well as admiration for the extraordinary amount of energy and constitutional fortitude it takes to get through each day. I also was dismayed that she had not received appropriate treatment to eliminate this burden.
Most of my professional life I have worked with children. However, over the last 15 years I have been studying adults with sensory defensiveness (with and without other sensory integration disorders) at Temple University in Philadelphia. Many of Tammy's issues are similar to other adults I have interviewed. I thought I would present several points that may be helpful to adults with Sensory Processing Disorder (SPD), as well as for therapists treating them.
While it sounds as if Tammy has not had a formal SPD evaluation, the way she describes her challenges coincide with several types of sensory integration problems described by A. Jean Ayres, Ph.D., OTR (1972, 1979). These include sensory processing and regulation (sensory defensiveness), dyspraxia (clumsiness and difficulty with motor planning), and difficulty in auditory language processing.
Tammy appears defensive to stimuli in many sensory systems including vision, smell, auditory, and somatosensory. At the same time she needs and craves much more somatosensory, proprioception, and vestibular sensation than she now receives in order to create an adequate body percept or schema which would provide an accurate foundation for motor control and planning. This dichotomy within and between sensory systems is confusing. The defensiveness results in a flight/fright response with concomitant anxiety. At the same time she has an unstable sensory motor map or foundation for her motor planning and coordination. As a secondary consequence of these types of difficulties, adults describe difficulty with emotional coping, organizing, learning, and self esteem.
I believe that a good percentage (not all) of children with ADHD are unable to attend due to sensory integration disorders. Sensory processing and regulation is only one aspect of the problem. Body awareness and postural stability are also essential for efficient motor planning and performance. Anxiety and/or inordinate effort required to perform everyday tasks can also result in inattentive behavior. Another issue is discrepancies between visual/perceptual and auditory/language learning, resulting in great inefficiency in learning. These are referred to as "learning style differences," auditory language learning disability vs. non-verbal learning disability, etc. Inattentive behaviors are also observed in children whose learning strengths are not consistent with the way things are taught. Tammy has issues in all three of these areas: defensiveness, need for heavy sensory stimulation to support the development of a body scheme and coordination as well as a discrepancy between visual and verbal learning ability. Her ADHD diagnosis most likely describes the behavioral manifestations of a complex, inefficient sensory processing system.
I would like to specifically address the issue of sensory defensiveness and share what other adults have found helpful. First, adults with these issues are relieved to find that their sensory systems are the culprit, i.e., that they actually perceive things differently from other people. Many have believed that they were "crazy" because from early childhood they realize that others do not experience things in the same way they do and they learn to hide it. Many seek psychological and psychiatric help.
A second helpful concept is that while sensory stimuli of various types is noxious to some adults with SPD, in fact, they need large doses of certain types of sensory input in order to perform better. This is contradictory to the inclination to either avoid most sensory experiences or to seek out only the input that can help them calm down after becoming overwhelmed. For many adults this method of coping robs them of many hours of precious time each day. They come home from work exhausted and need to spend hours, rocking, showering, crawling between mattresses, or isolating themselves in order to regroup. Some rise early in the morning in order to ready themselves for the onslaught of the day. While it is important to know how to re-attain equilibrium, it is more important to know how to bias your system all day, every day, so that you do not have to continually regroup.
Frequently, heavy input such as jumping on a trampoline, jogging, running, vibration, brushing, massage, heavy pressure, heavy bouncing on a therapy ball, swinging, or engaging in contact sports helps bias the nervous system in the morning and should be revisited as needed during the day. Less conventional inputs are also encouraged although less easily available, e.g., weighted blankets, vibrating beds. Each person's input/activity choices are different. We have designed programs by having the adult try 10 to 15 pieces of equipment or activities, rating them for themselves and then determining which ones work, are realistic to do, and/or can be simulated on a regular basis. The biggest deterrent to self treatment is that daily coping is so taxing that adding one more thing to the day seems overwhelming. However, the inevitable outcome is that there is renewed energy, improved mood, and diminished irritability and exhaustion. Once one gets going it is worth the effort.
Third, I recommend treatment with an occupational therapist. This may be direct or consultative for a self-directed individual. Many coping strategies are exhausting. Tammy described her need for organization and sameness and the emotional disintegration which occurred when her strategies were disrupted. This is typical of adults with defensiveness. The strategies help them cope day to day but do not dispel the problem or make life easier. While the above suggestions can address the defensiveness aspect of SPD, guided professional treatment is frequently more effective in changing the system to reduce the expenditure of energy for coping. For persons with inefficiencies in the other areas described, i.e., motor coordination, planning issues, and learning issues, I believe professional occupational therapy treatment is effective.
Whether or not SPD is ever resolved for an individual, maintaining self esteem is very important. Tammy clearly had timeless advice for us all. "I am a person, unique and genuine...view me the way I view you, with eyes of compassion and understanding...Know that I try...it looks easy it sounds easy, but for me often times it's not easy...I am a person, unique and genuine."
Ayres, A.J. (1973). Sensory Integration and Learning Disorders. Los Angeles: Western Psychological Services.
Ayres, A.J. (1979). Sensory Integration and the Child. Los Angeles: Western Psychological Services.
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Kinnealey, M., Koening, K. & Huecker, E. (1999). Changes in special needs children following intensive short-term intervention. The Journal of Developmental and Learning Disorders, 3(1), 85-103.
David, S. (1990). A case study of sensory affective disorder in adult psychiatry. American Occupational Therapy Association Sensory Integration Special Interest Newsletter, 13(4), 1-4.
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Kinnealey, M., & Fuiek, M. (1999). The relationship between sensory defensiveness, anxiety, depression and perception of pain in adults. Occupational Therapy International, 6(3), 195-296.
Kinnealey, M., Oliver, B., & Wilbarger, P. (1994). ADULT—SI Adult Defensiveness, Understanding, Learning, Teaching: Sensory Interview. Pilot Edition. Philadelphia: Temple University.
Kinnealey, M., Oliver, B., & Wilbarger, P. (1995). A phenomenological study of sensory defensiveness in adults. American Journal of Occupational Therapy, 49(5), 444-51.
Kinnealey, M., Oliver, B., & Wilbarger, P. (1999). ADULT—SI Adult Defensiveness, Understanding, Learning, Teaching: Sensory Interview. Manual. Unpublished. Philadelphia: Temple University.
Koomar, J., Szklut, S., Cermak, S., Silver, D. (1998). Making sense of sensory integration. Boulder, CO: Belle Curve Records. (Includes a checklist for adults to screen for sensory integration dysfunction.)
Oliver, B. (1990). The social and emotional issues of adults with sensory defensiveness. American Occupational Therapy Association Sensory Integration Special Interest Newsletter, 13(3), 1-3.
Reisman, J., & Feeney, R. (1990). It doesn't have to hurt: Treating sensory integrative dysfunction in an occupational therapy student. American Occupational Therapy Association Sensory Integration Special Interest Newsletter, 13(1), 1-3.
Reisman, J. & Scott, N. (1991). Learning about learning disabilities. (Video includes interview with adult woman with learning disabilities and sensory integration dysfunction.) San Antonio, TX: Therapy Skill Builders. (800-228-0752)
Single copies from the last 3 years of the American Occupational Therapy Association Sensory Integration Special Interest Newsletter can be purchased by contacting AOTA at: 800-729-2682 (ext. 2722), www.aota.org.
About the author:
Moya Kinnealey is an occupational therapy (OT) educator at Temple University. She has unique research and clinical expertise with children and adults who have Sensory Processing Disorder (SPD). We invited her to provide an OT perspective to Tammy Cook's article about coping with SPD and to recommend further reading about SPD in adults. Dr. Kinnealey can be reached at firstname.lastname@example.org