A Review of Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues
Volkmar, F. R. , & Wiesner, L. A. (2004). Healthcare for children on the autism spectrum: A guide to medical, nutritional, and behavioral issues. Bethesda, MD: Woodbine House, Inc.
Reviewed by Megan Atthowe, MSN, RN, BCBA
Association for Science in Autism Treatment Board Member
As many of our Science in Autism Treatment readers are well aware, there is a tremendous amount of misinformation and unverified information about the medical basis of autism and the implications this may have for biomedical treatment. A vast array of medical treatments lack any scientific support yet are made available to parents and their children by some health care providers who seem to take a risky non-science-based, and potentially exploitative approach to their work with this population. In a marketplace of seductive biomedical approaches to autism, it can be difficult for parents and other consumers to separate the misinformation from sound medical advice. Few of us, as health care consumers, are taught how to work within our complex health care system and how to make the most of our interactions with different medical professionals. Educated consumers with a more solid understanding of health care utilization will likely be better able to make sound, safe, and effective treatment choices. Such fundamental information, expert education, and timeless advice for families and other caregivers are what make Healthcare for Children on the Autism Spectrum as relevant today as when it was first published in 2004.
Drs. Fred Volkmar and Lisa Wiesner, a child psychiatrist and a pediatrician respectively, have written a unique and valuable resource that clearly reflects the union of their experience, expertise, and areas of specialty. Parents and providers will find a wealth of background information and how-to suggestions for accessing health care services for individuals with autism spectrum disorders and for helping them achieve optimal health and wellness. The book is an excellent store of knowledge not only for health care consumers but also for those in the health care system who would like to learn to provide more creative, effective services to families or who want a starting point in learning to work with individuals on the spectrum. Those who have given up on reading commonly-available books with “medical” and “autism” in the titles will find Volkmar and Wiesner’s book a refreshing source of sound medical information.
The authors have organized the book well into manageable chapters on each topic (e.g., sleep, nutrition, dental health). Overall, the content is factual and informative but also enjoyable to read and easy to digest. Information on child development and basic health care is interwoven with helpful tips and considerations relevant to children with autism and other pervasive developmental disorders (PDDs). Essential information and supplemental text are broken out into tables and boxes, and a few graphs are used to illustrate data. Each chapter ends with a summary of the most important points and a few frequently asked questions (and answers). The answers typically apply key points to real-life scenarios, and in addition to reiterating important information, sometimes shed light on a new aspect of the subject matter at hand. In other words, they are not to be missed. Throughout the text, the authors refer to additional books and other resources that are listed in two of the appendices. Other appendices include a glossary of more technical words and the diagnostic criteria for each of the PDDs. Finally, a unique feature of the book is an appendix describing the key features of different model of health insurance (e.g., HMO, PPO), the pros and cons of each, and some tips on how to be an informed, assertive consumer of their services.
The book’s organization is reader-friendly and certainly lends itself to serving as an ongoing reference. One can easily dip in and out to find information as needed. The authors cross reference other chapters frequently and occasionally repeat some information, so one need not sit down and read the chapters in order to benefit from the book’s content. However, since much of the book’s message has to do with prevention and preparation in advance, it would be unfortunate to wait until a problem or a crisis to read a relevant chapter.
Drs. Volkmar and Wiesner open the book with clear explanations of each PDD diagnosis and of how assessments are conducted to arrive at a diagnosis. They provide a succinct historical background and a conceptually clear description of the diagnostic categories; give a rational explanation for the increased incidence of autism spectrum disorders (i.e., increased public awareness, changes in diagnostic systems and methods, and confusion among labels used to obtain services versus those used for diagnosis); and summarize neurological, genetic, and environmental research findings related to the cause of these disorders. The chapter on assessment describes the process and players as well as many common tests used. It provides guidance to parents about interpreting the information gathered given the limitations of assessment tools. Helpful hints for parents about ways to assist the team to make an accurate assessment and ways to advocate for appropriate assessment as well as the inclusion of tables for more technical information were helpful features. The authors provide additional, more specific information on the assessment and diagnosis of the less common PDDs (Rett’s disorder and childhood disintegrative disorder) in a later chapter covering developmental deterioration.
Chapters on visits to the primary care provider, the emergency room, and the dentist provide information on what to expect during these visits, as well as tips on how to prepare the child and the provider for a successful visit. Suggestions for ways to modify a typical health care encounter to accommodate the needs of an individual with autism are also provided. The importance of a collaborative working relationship between the parent and provider is clear. While the authors acknowledge that individuals with autism may have challenges that make routine office visits challenging, one theme repeated throughout the book is an emphasis on the importance of getting routine well-child care. Children who spend time in medical and dental settings when they are not sick or in need of dental work can have an easier experience later when such care is needed. Other topics the authors discuss include ways that individuals with PDD may communicate pain, risk factors for dental disease specific to this population, common childhood medical problems, and practical hints and adaptations for home care of the sick child.
Chapters on nutrition, safety, sleep and adolescence and sexuality provide sound guidance and background information that all parents would do well to have; they also address unique issues that many parents of children with autism face, such as unusual food preferences, impulsivity, sleep problems, and social challenges. The authors provide numerous useful suggestions, including information about whom to consult if initial tactics do not work. A later chapter is devoted to sensory issues, including hearing loss, vision loss, and sensory sensitivities, with a brief discussion of each. A chapter on seizure disorders provides an overview of the most common kinds, explains the evaluation process and treatment approaches, and describes how to respond to a seizure. An important part of this chapter’s message is maintaining realistic expectations for medication management. For example, seizures may continue to occur, finding an appropriate drug and dose may take time, and that consistency in giving the medication will be needed.
Two chapters address challenging behaviors, specifically stereotyped behaviors, self-injury and aggression, rigidity and perseveration, over-activity and attention problems, and mood problems. The authors describe behavioral interventions as the first approach for addressing challenging behaviors. Suggestions include looking for patterns, noting antecedents and consequences, reinforcing appropriate behaviors, planning ahead, following through, providing a structured and consistent environment, and determining the function of the behavior. These general principles are then discussed as applied to the specific groups of behaviors. SIAT readers will appreciate the importance of sharing data on challenging behaviors with medical professionals as part of a collaborative, productive professional/patient relationship. Only after covering behavioral approaches do the authors provide an overview of the major classes of drugs used to treat the symptoms of PDDs. The discussion includes how they work, their common side effects, what they are intended to do, how long until they take effect, and other considerations such as the need to taper doses, for example. The authors provide things to think about when considering using medication and discuss tips for ensuring medications are used safely. The chapter is written with a balanced account of both the reasons for and against using particular medications. The authors also provide a summary of the research, when it exists, as well as the straightforward acknowledgement of the prevalence of off-label use.
Finally, the authors dedicate a chapter to complementary and alternative treatments, which is another way of referring to those treatments that are not scientifically-based and that are used instead of, or in addition to, standard, science-based treatment. The authors explain why these therapies are ubiquitous for individuals with autism spectrum disorders and how the scientific method can be (has been and should be) used to test new ideas to see what works. They provide guidance on how to judge the quality of research and information in the media and on the internet, and suggest warning signs that indicate a treatment might be unsound. If parents are considering using a complementary or alternative treatment, the authors provide a list of questions to ask themselves (and the providers) before becoming involved in what could be an expensive, time-consuming, or even risky endeavor. The authors’ ability to draw meaningful comparisons to everyday scenarios makes the content easy to relate to. Numerous checklists and tables make what could be intimidating information visually contained, and repetition helps to drive home important points. Finally, the authors describe several specific treatments and the theories behind them, the evidence (or lack thereof) to support their use, and the potential benefits or risks to a child from using them (including the medical risks). The interventions discussed include: facilitated communication, various dietary interventions, high doses of vitamins, chelation, plasmapheresis, secretin, anti-convulsant medications, steroids, anti-infective agents, intravenous immunoglobulin g, auditory integration training, central auditory processing treatment, FastForWord, visual therapies, body manipulation therapies, and the Options Method. Since 2004, of course, additional such therapies have come into existence/popularity, and it seems wise of the authors to include those most controversial, most popular, or most risky rather than to attempt a laundry list.
Throughout the book, Drs. Volkmar and Wiesner are clear about the value of scientific evidence and practices that are evidence-based, yet they note repeatedly that each individual and his or her family are different—touching on the “practice” element of evidence-based practice. They provide a considered perspective to health care for individuals on the spectrum, stressing that an analysis of the risks and benefits to the individual is always important. It may or may not be worth treating a problem, depending on what the problem is, the treatment, and the individual. In some cases, parents may prioritize and decide that the challenges of care may outweigh the benefits. In others, and with the sound, practical suggestions of these good doctors, the benefits of care may well be realized.
While this is not the place to turn for the most up-to-the-minute medical information (research on the use of medications and genetics have continued to advance since the book’s publication in 2004, for example), that is not the purpose of this book. Instead, it serves as a solid base of background knowledge. The only real concern is a wish that more of the web resources listed and portions of the chapter on sensory issues (specifically, sensory sensitivities) better reflected the same commitment to science-based practice as the rest of the book. However, this is mostly a reflection of the need for the practice community to demonstrate scientifically the effectiveness of specific methods (e.g., sensory integration). Finally, while the authors mention it in the afterword, an excellent addition to a future edition would be a chapter on the health care considerations for the growing population of adults with pervasive developmental disorders.
In summary, Healthcare for Children on the Autism Spectrum will go a long way toward helping parents be informed participants in health care encounters and health care providers be better helpers. By partnering together and planning ahead, parents and providers can set the occasion for a positive experience for individuals with PDDs in the health care environment—and one hopes, for good health.