Developmental Disabilities in Ontario
Edited by Ivan Brown and Maire Percy.
Toronto: Front Page Publishing. 1999, 3rd impression 2000.
539 pages. Illustrations, bibliographic references, index.
May be ordered online from the Ontario Association on Developmental Disabilities. $69.95 per copy, plus $5 shipping and $4.90 GST
Order form with Outline of Contents and Chapters 1 and 16 are on the OADD website
“The first text with broad and multi-disciplinary information that is specifically for people who live and work in Ontario” is how this large book is described by editors Ivan Brown (Centre for Health Promotion) and Maire Percy (Departments of (Physiology and Obstetrics and Gynecology) of the University of Toronto. Contributions by more than 60 authors, all professionals in some aspect of developmental disabilities, add up to a tremendous amount of information in a constantly changing field, to meet the needs of service providers, students, educators and researchers. The editors note the book’s relevance to changes in the ways people with developmental disabilities may be supported in Ontario – such as the shift from institutional to community living, and trends towards more person-centred planning and direct funding to families. They are also concerned with the genetic and environmental factors that cause or contribute to developmental disabilities.
Co-ordinating the production of such a volume is a major achievement, on which the authors, editors and OADD should be congratulated. As family members and friends of people who live with Autism and other disabilities, we found the tone of the book rather too detached and dispassionate. We would hope that support workers and others who work in this field will leaven their knowledge of developmental disabilities by learning more from personal and family experiences.
Developmental Disabilities in Ontario has 36 chapters grouped in five parts. Chapters are between 10 and 20 pages long and are nicely formatted with opening and concluding summaries, illustrations and examples, questions for further thought and discussion, and lists of resources and references.
The first group of chapters provides an historical overview and discussions of what is meant by the term “developmental disabilities” in Ontario (including their legal, bio-medical and social and human rights aspects), and of individual approaches to support, rights and freedoms, entitlements in law, and ethical issues relating to consent.
The second part surveys “Developmental Disabilities Through the Lifespan” with chapters on early intervention, schools, “lifestyles” of adults, work and employments, the role of families, understanding and helping “difficult” families, people with developmental disabilities as parents, and aging.
Part Three is concerned with “Etiology and Conditions” including an introduction to genetics and development, causes and contributing factors and approaches to intervention, and accounts of some common syndromes: Cerebral Palsy, Autism, Fragile X Syndrome, Fetal Alcohol Syndrome, and Children with HIV.
Part Four has chapters about health, including physical health in general; in relation to Down Syndrome and Alzheimer Disease; nutritional considerations; and behavioural, emotional and psychiatric disturbances.
Various “special topics” are discussed in the fifth group of chapters–problematic behaviour, sexuality, communication issues (three chapters), women’s issues, and the role of the professional supporting people with developmental disabilities.
How does this book advance understanding of people on the Autism spectrum in Ontario? Chapter 20 (pp. 281-293) by Adrienne Perry and Anne Black on “Autism” contains almost all the book’s explicit and indexed references to Autism disorders. The authors begin by stating some important generalizations about the phenomenon of Autism, as it is encountered by service providers and support staff. Autism may look very different from one person to another, depending on age, level of cognitive functioning, and particular symptoms and behaviour. Children and adults with Autism are found in a variety of situations and service environments. Having a child with Autism has far-reaching effects on the parents and other family members, with different issues arising at different stages in the family life-cycle.
Perry and Black summarize the DSM-IV definition of Autism and pervasive developmental disorders, stressing the triad of impairments: difficulties in reciprocal social interaction; pervasive impairments in communication; and restricted, repetitive and unusual behaviours and interests. On causes, they briefly note evidence for a biological basis with a genetic component. The importance of early intervention is noted for young children, with the Lovaas model of behavioural modification singled out as effective. Improving communication skills is commended as a goal for all people with Autism, and gestures, sign and graphic/visual aids are noted. Attentional, sensory and perceptual problems are mentioned as factors in some cases of Autism. The authors generally dismiss “new treatment methods” in the Autism field, naming several as “discredited” or “unproven”.
A diagnosis of Autism is too often synonymous with “severe problem behaviours” in many service and care situations – especially for teenagers and adults. The authors note that such behaviour may be related to difficulties in communicating, adapting to change, and understanding social situations. Drugs are accepted (though none have been specifically designed for people with Autism), and punishment. The authors state that it is unethical and inappropriate to punish or medicate a person in order to control their behaviour without:
-A thorough understanding–based on the concept of functional analysis “of why the behaviour is happening”
-Trying a series of less intrusive, more positive approaches, including teaching the person alternative behaviours and skills
-Proper safeguards in the form of ethical review, informed consent, and careful documentation as well as proper training and supervision of people administering such procedures (p.289).
But is “punishment” appropriate for someone who is overwhelmed by sensory overload or frustrated beyond endurance by the failure of support workers to understand their signs? Or what about the significant proportion of persons with Autism who have paradoxical reactions to medication?
“Tough challenges” faced by families who live with Autism are listed briefly, with a reference to other chapters that consider the role of families and especially “difficult” ones. The status of Autism services in Ontario is surveyed rather blandly, with the conclusion that “Ontario is fortunate to have a number of prominent Autism researchers, some dedicated professionals, and many courageous parents, all working together to improve our knowledge of Autism and our ability to meet the needs of people with Autism and their families more effectively” (p. 291).
The “Autism” chapter in Developmental Disabilities reflects its preparation several years ago, before the boost in publicity and research findings of the last few years (reported on the OAARSN website among other sources). Revisions to this chapter for future editions of the book might include reporting the much higher prevalence of Autism revealed in recent studies, concepts of the Autism spectrum (including Asperger Syndrome), and the range of theories to explain autistic disorders. A new discussion of helpful interventions might consider combinations of approaches that are proving appropriate – including diet and micronutrients, sensory integration strategies, and supported communication.
Above all, we hope that those who plan to support people who have Autism will have more empathy with them than is expressed now. In this book, people with Autism seem more like unpredictable objects that have to be handled and dealt with. Fortunately, increasingly numbers of authors have been using the evidence of what people with Autism are telling us about themselves and what it is like to be autistic–Stella Waterhouse’s A Positive Approach of Autism and Gail Gillingham’s books, for example.
We look forward to the next theme issue of the OADD’s Journal (in Spring 2002) which will contain edited papers from the ECLIPSE conference in Toronto in January 2001. This was concerned with older children, adolescents and adults on the Autism spectrum who are non-speaking and/or who are, or appear to be, severely cognitively impaired and/or severely behaviorally disturbed.