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How to Talk to Parents about Autism.
Roy Q. Sanders . New York, NY: W.W. Norton & Company; 2008. 256 pages. $26.50, softcover.
This is a most unique and valuable book, written by the father of a boy with an Autism Spectrum Disorder (ASD) who is also a psychiatrist who has advised others about this disorder. Experience from both sides of the gurney make this book particularly helpful. It is divided into a number of well chosen sections, and the chapters follow a formula, beginning with a description of the particular area of interest, followed by answers to questions parents frequently ask, and finally Dr. Saunders’ descriptions of his own experience with the matter at hand. In this way, he adroitly manages to deal with the questions that most concern parents, models the skills necessary for the professional who is advising them, and gives practical examples of situations as he experienced them as a parent. While books about the subject matter of autism are common, practical advice on the role of the professional as advisor, with its demands, is much harder to find, and one of the subjects that is not often discussed in formal medical education. Professionals and parents will benefit from his expertise.
The book begins with the initial visit when the diagnosis of an ASD is made. It then goes on to describe the benefits and limitations of diagnostic labels, which I know, in my experience, are often a concern of parents. Dr. Sanders emphasizes the importance of the affected family’s relationships, including friends, relatives, other parents, and members of the community. Often, the greatest difficulties for families dealing with a serious mental illness are created by the isolation they experience, engendered by fear and guilt.
Co-morbidities in the child with an ASD are dealt with next; intellectual disability, in particular, is often seen as even more stigmatizing than the ASD itself. Co-morbid sensory integration problems, attention deficit-hyperactivity disorder, obsessive compulsive disorder, tics, mood disorders, and anxiety disorders are reviewed, and the unique ways in which they present in this population are well covered. Specific areas of special concern, such as language delays, deficient social skills, repetitive behaviours and special interests are discussed. Tantrums, and the critical importance of dealing with them early in development are particularly well addressed. Family stressors, caused by the patient’s sleep disorders, toileting deficits, and dietary peculiarities are each dealt with in a practical and comprehensive way, with the professional aspects balanced by the author’s personal experience.
The topic of treatments for ASD is particularly well handled, including the place of alternative treatments. Family stress and ways of handling it are discussed at length, including the importance of rest, support, therapy and honesty. The discussion of the typical “division of labour” that results in one parent (often the mother) becoming the caregiver, and the other the breadwinner, is particularly to the point. The author points out that the resulting polarization of the parents can lead to extreme caregiving pressure for one and isolation for the other unless a concerted effort is made to divide the work of parenting equitably.
Dr. Sanders’ description of reacting as a “professional parent” with the feeling that he had to “fix everything” was also apt and I could definitely identify with his dilemma. The potential role of extended family and siblings, and the associated benefits and pitfalls are well covered.
Finally, the book reviews the developmental stages that the child and family affected by ASD experience, outlining the challenges that mark each school level. Warnings against procrastination, isolation and denial are clearly yet sympathetically spelled out. While the issues of wills and guardianship are painful to broach, as is usually the case, Dr. Sanders makes the case that the only way to truly relieve the pressure that the family is experiencing is to meet this issue head on.
The book has few shortcomings; repetition is common, but serves to emphasize important points and allows the sections to stand alone. The writer is from the United States, so some legal and political comments are not germane to the situation in Canada. These are small matters when compared to the unique and rich perspective this volume brings to its readers.