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Positive Approaches Journal, Volume 10, Issue 1

Brown | 15-22




Positive Approaches Journal - Volume 2 Title

Volume 10 ► Issue 1 ► May 2021



Responding to the Victimization of Individuals with Intellectual Disabilities and Autism

Sierra Brown, PhD


Abstract

People with disabilities are at risk for sexual victimization at a much higher rate than their peers. Current estimates may be underestimated due to challenges in communication and disclosing abuse. Improving sexual education and knowledge for people with disabilities can improve outcomes and reduce the risk of victimization. However, many individuals do not receive adequate sexual education. This article reviews how Autism Services, Education, Resources, and Training (ASERT) Collaborative is responding to this issue and raising awareness to decrease victimization.

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Introduction

Healthy relationships and sexuality are important parts of a fulfilling, everyday life, and a right for all people with developmental disabilities. However, many people with developmental disabilities do not have the same access as others to education and knowledge essential to developing and maintaining healthy relationships – including education regarding sexual health and sexuality.1,2 People with developmental disabilities are at a disadvantage as research suggests that people with Intellectual Disabilities and Autism (ID/A) have lower levels of perceived and actual knowledge of sexuality.3 Additionally, poor sexual knowledge may increase the risk of sexual victimization. 2 Recent findings suggest that people with intellectual disability are sexually assaulted seven times more than people without disabilities. This striking statistic highlights the need and urgency to develop risk reduction strategies and improve the sexual education for people with developmental disabilities.

Sexual Education and Developmental Disabilities

Sexual education is essential to the development of healthy relationships and reducing risk of victimization. However, sexual education is not universally provided to children, adolescents, and adults who have developmental disabilities. A common belief was that people with disabilities did not desire sexual relationships, were asexual, or could not manage these types of relationships. Decades worth of research and advocacy have documented improved attitudes of families, caregivers, and professionals regarding the sexuality and sexual education of individuals with disabilities.4,5 Despite the paradigm shift, the availability to receive this type of education remains limited for individuals with disabilities for many reasons. Though attitudes have generally improved overall, the sexual development of individuals with disabilities is still often ignored. 5 Information about sexual health may be intentionally or unintentionally withheld from people with disabilities during critical moments of adolescence and adulthood for fear that the information will increase inappropriate sexual behavior, fear of victimization, the belief that the person would not have the ability or desire for a sexual relationship, or due to concerns regarding consent and their decision making ability regarding sexual activity. Students with disabilities are at times excluded from sex education at school or may not receive adequate education that is taught to their developmental level.6 If topics related to health and development are covered, information about more nuanced topics such as dating, marriage, and sexuality are typically not adequately covered.7 By the time a person reaches adulthood, there are very limited resources and opportunities for direct education. When sex education is provided it is often not tailored to the individual’s needs and is offered traditional views of sexuality from a heteronormative framework.8 Many individuals with disabilities are then left to get their relationship and sexual knowledge from unreliable sources, such as the internet, TV shows, movies, and pornography.1 These methods may perpetuate misconceptions about sexuality and do not provide adequate information about what it takes to have a healthy sexuality. Oftentimes, the responsibility of sexual education falls on parents and caregivers who may have a high degree of discomfort or uncertainty about the appropriateness of broaching topics issues related sexual health, relationships, and sexuality.4,8-11

Direct instruction of sexual education is also necessary to give people the tools necessary to recognize and prevent abuse or exploitation. Increase risk of sexual victimization is influenced by many factors including learned compliant behaviors, increased reliance on others for assistance in personal care, communication challenges, lack of awareness that certain behaviors are considered sexual abuse or exploitation, or a desire to be socially accepted. Education can be used to teach personal safety skills to recognize and disclose sexual abuse. Education can also be a powerful tool to empower people with disabilities to exercise greater autonomy over their body, life, and choices.

Best Practices in Sexual Education

When it comes to sexual education, a comprehensive range of topics should be covered to address all aspects of healthy relationships and sexuality– from personal hygiene, information about puberty, understanding anatomical information, and topics regarding sex.

Sexual education should be tailored to the person’s specific needs, with special consideration for the developmental level, communication skills, and age. Teaching sexual education should follow the best practices of education for individuals with disabilities including repetition, the use of visuals, concrete language, video modeling, and social scripts. Therefore, sex education cannot be a one-time occurrence that happens in high school. Sex education should be started from an early age and should continue through adulthood, focusing on age-relevant issues. The goals of the education should not only be aimed at risk reduction and prevention of inappropriate sexual behaviors. However, it is equally important to equip people with skills to develop meaningful relationships and sexuality and also provide them information to be able to distinguish between risky and safe behaviors.

The adequacy of sexual education may also be related to conflicts with existing policies, regulations, and laws aimed at protecting vulnerable populations. For example, results of one study showed professionals identified several topics related to sexual health that were not allowed to be taught in their organization. 12 It is a challenge to balance existing policies and procedures with the needs of individuals who benefit from direct sexual education. In Pennsylvania, this was addressed by the Sexual Health, Personal Relationships, and Sexuality Guidelines put forth by the Office of Developmental Programs (ODP)13 which state, providers are encouraged to “have a policy on sexuality that is consistent with the values of Everyday Lives…” and to “provide accessible and appropriate education, information, and resources that address sexual health, personal relationships, and sexuality needs.”

Autism Services, Education, Resources, and Training’s (ASERT) Response in Pennsylvania

In 2018, the National Public Radio (NPR) released a series called “Abused and Betrayed” investigated unpublished findings from the US Department of Justice documenting how people with intellectual disabilities were disproportionally impacted by sexual abuse. 14 Statistics provided by the Department of Justice revealed that people with disabilities were sexually assaulted seven times more than people without disabilities indicating people with disabilities. 14 The series prompted swift action from advocates and organizations to help meet the needs of individuals with disabilities to reduce the risk of victimization and to increase competency in healthy relationships.

ASERT is a state-wide initiative in Pennsylvania funded by ODP aimed at supporting individuals with autism, their families, caregivers, and professionals through providing resources, education, and training.  Following the reporting by NPR, the response from ASERT began with a partnership with experts in the field to address the risk of sexual victimization for people with autism spectrum disorders (ASD). The first initiative by ASERT was in collaboration with researchers at the National Crime Victims Research and Treatment Center (NCVC) at the Medical University of South Carolina called the “Be Safe” campaign. The goal of the Be Safe resource collection was to disseminate pertinent, scientific, and developmentally relevant information to the community about prevention and intervention strategies for people with ASD. These resources were created in part to address the needs of parents, caregivers, and professionals but also aimed to empower self-advocates by providing information about healthy relationships and sexuality.

The resources developed for the Be Safe campaign were created with best practices of information dissemination in mind. To target a large variety of stakeholders, learning styles, and information preferences, ASERT adapted resources on topics related to sexual health and reducing risk in a variety of formats including resource pages, social stories, visuals, and videos. eLearning modules were also developed to provide families/caregivers, professionals, and self-advocates more in-depth information about the prevention and intervention for sexual victimization. Furthermore, to provide the community easier access to these resources these resources were then published online at ASERT’s website, www.PAAutism.org/BeSafe.

ASERT continues to develop projects with a focus on reducing risk of sexual victimization through collaboration with two organizations that support individuals with developmental disabilities in Pennsylvania: Healthcare Quality Units (HCQUs) and Temple University Institute on Disabilities as part of the Information Sharing and Advisory Committee (ISAC) sub-committee on sexual abuse prevention. The aim of this collaboration was to develop resources to increase capacity and knowledge for service providers on topics healthy relationships and risk reduction in line with ODP’s Sexual Health, Personal Relationships, and Sexuality Guidelines.

Conclusions

Healthy relationships and sexuality is a right of all people. Though a great deal of progress has been recognizing sexual health as an important aspect of an everyday life, more action is needed to develop ways to deliver sexual education and reduce the risk of victimization. Recognition of the risk factors and signs of sexual victimization, improved access to education for individuals with disabilities, and focus on best practices can help to further reduce this risk of sexual victimization for people with disabilities.






References

1.      Mehzabin P, Stokes MA. Self-assessed sexuality in young adults with High-Functioning Autism. Res Autism Spectr Disord. 2011;5(1):614-621.

2.      Solomon D, Pantalone DW, Faja S. Autism and adult sex education: A literature review using the information-motivation-behavioral skills framework. Sex Disabil. 2019;37(3):339-351.

3.      Brown-Lavoie SM, Viecili MA, Weiss JA. Sexual knowledge and victimization in adults with autism spectrum disorders. J Autism Dev Disord. 2014;44(9):2185-2196.

4.      Tamas D, Brkic Jovanovic N, Rajic M, Bugarski Ignjatovic V, Peric Prkosovacki B. Professionals, parents and the general public: Attitudes towards the sexuality of persons with intellectual disability. Sex Disabil. 2019;37(2):245-258.

5.      Ballan MS. Parental perspectives of communication about sexuality in families of children with autism spectrum disorders.  J Autism Dev Disord. 2012;42(5):676-684.

6.      Barnard-Brak L, Schmidt M, Chesnut S, Wei T, Richman D. Predictors of access to sex education for children with intellectual disabilities in public schools. Intellect Dev Disabil. 2014;52(2):85-97.

7.      Holmes LG, Himle MB, Sewell KK, Carbone PS, Strassberg DS, Murphy NA. Addressing sexuality in youth with autism spectrum disorders: Current pediatric practices and barriers. J Dev Behav Pediatr. 2014;35(3):172-178.

8.      Barnett JP, Maticka-Tyndale E. Qualitative exploration of sexual experiences among adults on the autism spectrum: Implications for sex education. Perspect Sex Reprod Health. 2015;47(4):171-179.

9.      Holmes LG, Strassberg DS, Himle MB. Family sexuality communication for adolescent girls on the autism spectrum.  J Autism Dev Disord. 2019;49(6):2403-2416.

10.  Nichols S, Blakeley-Smith A. “I’m not sure we’re ready for this …”: Working with families toward facilitating healthy sexuality for individuals with autism spectrum disorders. Soc Work Ment Health. 2009;8(1):72-91.

11.  Hartmann K, Urbano MR, Raffaele CT, Qualls LR, Williams TV, Warren C, Kreiser NL, Elkins DE, Deutsch SI. Sexuality in the autism spectrum study (SASS): Reports from young adults and parents. J Autism Dev Disord. 2019;49(9):3638-3655.

12.  Curtiss SL, Ebata AT. Building capacity to deliver sex education to individuals with autism. Sex Disabil. 2016;34(1):27-47.

13.  Bulletin 00-18-01 attachment 1: Sexual health, personal relationships, and sexuality guidelines. Rehabilitation & Community Providers Association website. https://www.paproviders.org/wp-content/uploads/2018/04/00-18-01-Attachment-1-Sexual-Health-Personal-Relationships-and-Sexuali....pdf. Published 2018.  Accessed April 16, 2021.

14.  Shapiro J. Abused and Betrayed Series. NPR website. https://www.npr.org/series/575502633/abused-and-betrayed. Published January 8, 2018. Accessed April 16, 2021.




Biography

Sierra Brown is a licensed and board-certified psychologist. Dr. Brown is currently an Assistant Professor within the Department of Psychiatry, Division of Autism Services. In the Division of Autism Services, she is actively involved in research and community outreach projects through the Autism Services, Education, Resources, and Training (ASERT).

Contact Information

Sierra Brown

Assistant Professor, Department of Psychiatry, Division of Autism Services

Phone: 717-531-8338