The literature regarding adults with Down syndrome is limited compared with that of children and adolescents with Down syndrome. The 2006 edited text of Adults With Down Syndrome provides an informative perspective on the characteristics, experiences, opportunities, and challenges of this population, as well as services that can enhance their quality of life. Siegfried M. Pueschel, MD, is the editor and coauthor, and other contributors include scholars, clinicians, a parent, as well the most “expert” of all, adults with Down syndrome. This text is written in a manner that is relatively easily to understand by laypersons. It contains 16 essays and 11 chapters related to health, psychiatric disorders, positive behavior supports, sexual issues, college education, job training, recreation, social relationships, guardianship, and advocacy.
The essays by adults with Down syndrome reflect the lives of remarkable individuals. They are inspiring and touching accounts of the authors' many achievements and drive for independence and inclusion. Among the writers are college students, licensed vehicle drivers, actors, musicians, entrepreneurs, public speakers, and strong advocates for themselves and others. The well-written essays focus on their lives and include work, social, and home issues. Of particular interest are their challenges, such as being teased and the death of a parent. One author writes,
I did not realize that I had Down syndrome until I was in sixth grade. All of my life, I have been trying to be a positive person but felt frustrated. I noticed some of the students teasing me. I also felt like I had a heart of stone because I did not want to pout in front of them, showing my weak spot. I waited until I got home to let my feelings out with the unconditional love of my parents. (p. 52)
Based on the information provided, however, the essays' authors do not represent the larger population of adults with Down syndrome in the United States. They are young adults in community settings who appear to be from middle or higher socioeconomic class backgrounds, and all but one seems to be of European descent. In particular, those with lower IQ levels are unrepresented. The editor indicates that the contributors are speaking for others who are less eloquent, but inclusion of individuals with lower cognitive functioning would have provided a more accurate picture of adults with Down syndrome. The essays are described as written “for the most part” by the respective authors, with editorial assistance being provided to some. It would have been informative to indicate which of the essays were written without assistance because many of them are very impressive in the quality of writing. In addition, it would have been preferable for the editing to have been very limited (e.g., spelling corrections). Despite the clarification in the preface, the collection may give the false impression that such writing is typical of adults with Down syndrome.
The chapter on health care and medical issues covers critical information that is especially recommended for caregivers. The content ranges from general health maintenance to neurological issues. There are noteworthy cautions, such as the sensitivity needed when conducting gynecologic examinations and the atlantoaxial instability in some adults with Down syndrome. Although most of the information provided is supported by citations, there are a number of instances when this is not the case. More precision and statistics are also needed, as reflected in the following statement: “a limited number of these individuals develop clinical signs of dementia” (p. 38).
The psychiatric disorders chapter provides valuable information on the diagnosis and treatment of adults with Down syndrome (e.g., the differential diagnosis of depression). Although there is discussion of anorexia nervosa, which is acknowledged as rare, there is little mention of other, more prevalent psychiatric problems. Specifically, with exception of obsessive-compulsive disorder, there is limited discussion of other anxiety disorders. Regarding the prevalence data, it should have been made clear whether the individuals who were sampled lived in private homes and similar community facilities, considering that this tends to impact the data. Another confusing point is that the authors state that there is “…no effective treatment…” (p. 63) for autism and then proceed to indicate that several types of interventions are recommended for the disorder.
In the chapter on positive behavior supports, the rationale for moving beyond traditional behavioral programming when dealing with challenging behaviors is compelling. The positive behavior support process is offered as an alternative. Person-centered planning is emphasized in addition to special considerations in the use of the functional analysis of behavior. Helpful checklists, figures, and a case example are included; however, recommended references and resources for laypersons would have been welcomed additions.
A strength of the chapter on sexual issues is that it is written mainly from the perspective of adults with Down syndrome and their parents. A sample quote follows: “Down syndrome makes you different. People think you will be different in everything. They don't think you know about boyfriends and girlfriends and sex and families and babies” (p. 105). There are a few examples of quotes that, compared with the essays, are more consistent with expectations for the larger population of adults with Down syndrome. One example is, “I am glad I am a girl. I am glad I am pretty and smart. I am very nice, too” (p. 112). Another example is, “I am a man. I shave. I have a bankcard. My job cleaning, mopping. Towels and stuff at YMCA” (p. 113). Despite the acknowledgment of the wide range of cultural views regarding sexuality, more discussion of the impact of cultural issues would have enhanced the chapter as well as the book as a whole.
An underlying theme of the text, in general, and the chapter on fostering college success, in particular, is that a paradigm shift is needed. That is, long-held stereotypes of adults with Down syndrome should no longer limit what this population can experience and accomplish. Descriptions of actual college students' experiences are also provided. One individual is quoted to have said, “When I was born, my parents were told that I would be in an institution, and now I am, but it's another kind of institution—a college!” (p. 133). The chapter recommends the more inclusive individual support system with its accompanying college-level course expectations rather than special programs (e.g., life skills) that happen to be housed at colleges. This perspective is laudable, but it is unrealistic to expect that most adults with Down syndrome will be able to meet the challenges of college-level work. In addition, citations are needed to support some assertions in the section on the “proven” (p. 132) cycle of success.
Similarly, empirical evidence for recommending best practices in the chapter that addresses vocational issues is lacking. The chapter highlights education, transitional planning, supported employment, employment negotiations, as well as family and workplace supports. Of particular note is an informative case example of an 18-year-old man with Down syndrome, for whom the need for careful planning and effective supports is emphasized. This and two chapters on community issues also focus on the needs and supports of persons with more severe disabilities. In the chapter on supporting community living (Chapter 15), the least restrictive environment model is contrasted with the recommended supported living approach. Although the residential continuum is described, the alternative of living with one's family is not specifically mentioned. This is important because Chapter 19, the other chapter on enhancing community living, indicates that most people with intellectual and developmental disabilities live with their families (p. 203). In the latter chapter, the authors highlight the large number of people still waiting for community services and residential alternatives to large institutions. They provide an excellent review of the literature regarding the unmet promise of and significant challenges to full physical and social community participation and inclusion for many persons with Down syndrome and related disabilities. A chapter about the recreational, fitness, and well-being benefits of Special Olympics is also included in the text. Notably, health issues are considered, including that many individuals with Down syndrome have underlying health issues that are “undetected or unappreciated” (p. 192).
Two chapters addressing the related issues of guardianship and advocacy are especially enlightening. Topics include capacity in decision making, independent decision-making options, due process in guardianship proceedings, and limited guardianship. For example, one advantage of limited guardianship is that it may preserve the individual's right to vote. Alternatively, a case example is provided to illustrative that guardianship can serve to preserve an individual's rights. The chapter devoted to advocacy includes a history of advocacy, levels of advocacy, and advocacy across the lifespan. An inspiring case description is provided of how advocacy led to a young man with Down syndrome casting his vote in the 2004 elections. The chapter also offers specific suggestions to optimize advocacy and a reminder of a self-advocacy slogan: “Nothing about us without us!” (p. 274).
In conclusion, the text would have benefited from having a general introductory chapter regarding Down syndrome, including topics, such as causes of Down syndrome and the prevalence of various IQ ranges for the population. Overall, there is limited discussion of middle and old age, lower levels of cognitive ability, expressive communication challenges, cross-cultural issues, and low socioeconomic status. Nonetheless, this text is long overdue and addresses important issues in the lives of adults with Down syndrome. In particular, the essays are rare and moving life accounts that help tear down long-held stereotypes.