Doing What Comes Naturally? Dispelling Myths and Fallacies About Sexuality and People With Developmental Disability. Oieda Horn Anderson. High Tide Press, 2000.
Over the past few decades, there has been growing interest among professionals and family members in the sexuality issues facing people with developmental disabilities. Similarly, there has been growing recognition of and response to the heightened vulnerability of people with developmental disabilities to sexual, physical, psychological abuse, and neglect. The most recent contribution from Anderson integrates these two areas and will likely provide some eye-opening information to readers who have had very limited exposure to this content. Professionals with extensive clinical experience with people who have developmental disabilities and sexuality issues or dual diagnosis (mental retardation and mental disorder) or well informed family members may find that this book offers little that has not been presented in greater detail elsewhere.
This book provides valid points for readers' consideration about the many misconceptions associated with the sexuality of people with developmental disabilities. Numerous case examples are used to illustrate how common misconceptions have been used to deny people with developmental disabilities access to important, protective sexual education. In addition, some of the terrible personal, medical, and behavioral consequences of sexual misinformation are discussed. The presentation of this material provides powerful reminders of the enormous personal costs that are frequently paid by people with developmental disabilities. The author clearly writes with great empathy, respect, and compassion about the people with whom she has worked.
An important contribution to this book includes a thoughtful discussion about the range of causes that can be associated with a variety of problem behaviors that may or may not appear to be sexual in manifestation. This discussion outlines an important consideration. It reminds readers that when dealing with sometimes very perplexing behaviors and attempting to understand their causes it is critical not only to look beneath the surface features of the behaviors, but to also entertain a range of possible hypotheses.
Readers with considerable experience and knowledge in this area may find this discussion and case presentation fairly superficial because Anderson does not explore the enormously complex psychological, diagnostic, medical, social, and biological factors that may be involved in the development and maintenance of these behaviors. She does not examine the diagnostic overlay or the impact of medications that can also be significant parts of and can impact the presentations of problem behaviors. Most of the case examples presented represent fairly high functioning individuals who responded relatively positively and quickly to straightforward sex educational interventions, the use of dolls or models, and invitations to discuss a trauma history, etc.
Anderson emphasizes the importance of healthy sex education as an important source of protection against sexual abuse. It is true that in the experience of many professionals and family members, this lesson frequently needs to be revisited. Consistent with common clinical wisdom, the author emphasizes the importance of explicitness in educational and interviewing materials. She outlines the use of different teaching materials, including the Circles program, the Life Horizons program, the Jim Jackson models, and the Effie dolls. Anderson also presents case examples of using some of these materials when investigating potential sexual abuse. A list of assessment questions and indicators of sexual abuse are provided in the appendix. These additions are helpful and may provide some readers with an understanding about the process.
Readers with considerable experience may find these discussions lacking. For example, the author does not examine in any detail what criteria should be considered when deciding what to use, when, and with whom. Inconsistent with common clinical wisdom in this area, Anderson does not appear to make reference to working with the person's system in order to implement educational strategies that can be applied in a variety of contexts to promote generalizability of knowledge. It is not an uncommon circumstance for professionals to find great barriers to sex education associated with other professionals and family members.
Anderson makes no reference to determining a person's comprehension of the material presented. People functioning within different ranges of ability (including cognitive functioning, adaptive functioning, social skills, language processing, hearing, or other disabilities) will require that material and teaching strategies are modified appropriately. Proper and careful modification based on a person's individual strengths and weaknesses may ensure that they are more able to process and generalize the information presented. The difficulties associated with teaching about puberty, self-protection, sexuality, friendships and relationships, touch, social skills, coping skills, and social discrimination skills are not presented but are very critical components in teaching about sexuality and relationships.
In addition, the discussion pertaining to the use of dolls in investigating sexual abuse is problematic. Unfortunately, insufficient care is taken to inform readers that caution must be taken when attempting to determine whether or not abuse has occurred (especially as significant legal consequences can arise pertaining to questioning about the abuse prior to child welfare or criminal justice investigation). It would have been helpful if the author had made reference to the Sexual Abuse Interview for People With Developmental Disabilities and other available resources. Also it would have been helpful to clarify the significance of ethical and professional considerations involved in these practices. In most places legal statutes require individuals who suspect abuse to report to the Child Welfare or Adult Protection authorities. It is vital that individuals who are working with people with developmental disabilities do not feel that it is their job to investigate for sexual abuse every time a person presents with sexual behaviors. People providing sex education may not be properly trained to undertake such a role. It would also have been valuable had the author mentioned that providing sex education frequently elicits sexual abuse disclosures and that those providing this education should have strategies and resources in place to responsibly and ethically deal with these disclosures.
The book provides a brief section on counseling. Advanced readers may also find the discussions of interventions including counseling to be particularly insufficient, because the author tends to oversimplify the complex processes involved in providing therapy to people presenting with often very complex issues and diagnostic considerations. Many of the case examples presented involve fairly high functioning individuals with problems related to sexual abuse trauma and sexual misinformation, yet the consultant's or therapist's role working with the person's system is not presented. Many therapists feel it is vital to the success of both sexuality related educational and counseling components of treatment to work closely with the person's system. This collaboration is often critical in order to help the person's support systems understand the individual's symptoms and difficulties and to learn ways to best support that person in their healing.
Unfortunately, it seems that much of the literature produced in this area overemphasizes the importance of providing sex education as a means of primarily preventing sexual abuse, pregnancy, and behavioral and medical difficulties. Preventing these very complicated problems are important goals, but teaching about the pleasures and joys and the emotional complexity associated with sexual intimacy often are treated as a kind of afterthought. This book does provide important reference to skin hunger and the need for touch and sensuality. Some readers may notice, however, that the author places heavy emphasis on heterosexual and marital relationships and does not refer to other possibilities, for example, gay relationships.
This is a book that may provide eye-opening information for people who have never been exposed to this type of material. For professionals with extensive clinical experience with people with developmental disabilities and/or well-informed family members, little is offered that has not been presented in greater detail previously.