OAARSN Book Reviews
A New Understanding! Solving the Mystery of Autism, Asperger’s and PDD-NOS,
Handle With Care! Understanding and Managing the Behavior of Children
and Adults with Autism,
Both these books are very highly recommended for all people who live and work with autism. If you can’t read anything else about autism this year, be sure to read these.
Gail Gillingham Wylie has worked in the field of autism since 1988 and currently operates Autism Consulting Service in Edmonton, Alberta. Her first book, Autism: Handle with Care!, was her response to her experience and observation that:
Autism is the most difficult of developmental disorders with which to work. There is no known cause. There is no cure. We cannot ask...most individuals with autism...what is wrong. Their behavior often seems bizarre and unpredictable. Caring for the autistic population often feels like a thankless chore as clients show little or not response. Hours and hours of caretaker time are spent trying to reach those who have autism, to change their behaviors and make them normal and socially acceptable—often to little avail.
In contrast to this common situation, she offers "hope for people with autism through acceptance and understanding."
Gillingham tells how she came to realize that the symptoms of autism are a direct result of the high level of stress in which autistic people live on a day-to-day, minute-to-minute basis. Her thesis is that they are hypersensitive to sensory stimuli, far above and beyond any "normal" level or range—so that they are "superabled" rather than "disabled." The longterm result of acute sensitivity and over-stimulation on development is the autistic lifestyle. A low-functioning individual with autism has higher levels of sensory response than someone who is high-functioning and thus has a greater need to protect herself (or himself) from intolerable bombardment by sensory stimuli in the environment by spending most of life isolated in a world of her/his own. While an adult with autism may be less sensitive than when a child, s/he may continue to live in a state of anxiety, waiting for the pain to return. Any feeling is regarded as a threat and the body protects itself by overreacting or becoming dead.
Both books are remarkable for taking seriously what autistic people say about their condition. The author’s generalizations and "sensory theory of autism" are based on hundreds of vivid quotations from people who live with the reality of autism, some of whom have discovered their expressive powers with facilitated communicating. Gillingham declares that "when we listen to those with autism, we discover a totally new picture of the condition. We find individuals who long for relationships with us, who have cognitive skills intact and are able to communicate with us in ways we never dreamed possible. It is definitely time for us to make the attempt to listen even more carefully in order to give up the hopelessness and despair that overwhelm so many of our parents and professionals."
Chapters of Autism: Handle with Care! address the following topics: mannerisms (repetitive behaviors to reduce arousal to an over-stimulated nervous system); the various senses (tactile, auditory; visual, olfaction and taste) in autistic people; how a sensory theory of autism affects our understanding of social interaction and intelligence; and the sensory element in various current therapies for people with autism.
Autism: A New Understanding! is also imbued with the sensory theory of autism, but more emphasis in placed on the positive implications of "hope and excitement instead of hopelessness and despair ... when we open our eyes to the reality of autism from the inside.
"What is autism?" is a question usually answered in doom-laden and depressing terms. In this chapter, Gillingham discusses some of the remarkable gifts and insights that autistic people can express when they are stress-free—their joy in creation and the beauty of the world, their pleasure in simple things, their spirituality; and their intelligence. She also explains the stages of anxiety-buildup, survival mode (including repetitive and stereotypic behaviors and shutdown) and meltdown.
The next three chapters explore the three main factors in stress—over-stimulation from the environment including other people; over-stimulation from within (including heightened emotional reactions, physical reactions, pain and medical problems); and boredom (a major problem in our schools and day programs for autistic people who are "actually deep thinkers with very busy minds" and "natural wit and humor"). Each chapter considers the various coping skills that autistic people develop to block out excessive sensory input, as well as how family members, caregivers and professionals can help.
In Chapter Five, the author reports a "super sensory workshop" she has designed so normal people can experience over-stimulation equivalent to what autistic people feel. Participants are exposed to high levels of olfactory, auditory, tactile and visual stimulation in a classroom situation in which they are expected to learn new material. Chapter Six is a short discussion of our current understanding of factors that may cause autistic/anxiety symptoms in an individual.
The remaining eight chapters of Autism: A New Understanding! consider ways we can help autistic people to make remarkable progress. Chapter Seven is about early intervention--which Gillingham stresses is not a cure and may produce a brain tuned to anxiety if it is too over-stimulating and/or controlling. Chapter Eight is about the importance of inclusion based on unconditional acceptance and respect—in the community, schools, employment and churches. The ninth and tenth chapters report the author’s experience in understanding and overcoming the impairments in communication and social interaction—both achievable by changes in our attitudes rather than by teaching autistic people to be normal.
Chapter Eleven consists of lessons for parents which are summarized in the following maxims: "you are not alone"; "work through the process of grief to acceptance and hope"; "it’s not your diagnosis"; "becoming an expert"; "learning the history"; "know thyself"; "facing your limitations—the importance of a team"; and "create a joyful life."
In Chapter Twelve, Gillingham reports the "lessons I’ve learned as a professional." In brief, these are: "education is only a starting-point"; "the real experts are those with direct experience of autism"; "taking responsibility"; "stepping out of the box" of one’s narrow specialism or hypothesis; "working as team"; and "a program is not a life."
Chapter Thirteen offers suggestions about some common difficulties that are raised in her conference presentations—toilet training, sleep, haircuts, and puberty. But both books also contain hundreds of useful insights and specific tips. Here are three examples.
Above all, Gillingham tells us to "listen" to the "real experts" on autism. To Jenn Seybert, for instance, in her address to the Year 2000 OMR Statewide Convention in Hershey, PA, in February 2000 (quoted on pp.3-4 of Autism: A New Understanding!):
I want you to think of my thoughts you have just heard and of these people who sit in silence in front of you. They need your help to find a means to communicate because there is a way out of silence. Your views about our outward facade must change. If is of great urgency that you begin to look beyond our disability and really begin to know us.
Remember, love is not enough. Giving us a direction and helping us with our choices is what self-determination is all about. This is where our lives begin. With you hearing our thoughts and working with us to realize them.