The twenty first century brought a long-awaited focus to sexuality and ASD. Although a paucity of data still exists regarding sexuality education and ASD (Loftin & Hartlage, 2015), most publications do provide recommendations for the who, what and when components of teaching about sexuality. But finding appropriate informational resources and curriculum is an identified challenge for professionals and parents (Ballan, 2012; Nichols & Blakeley-Smith, 2009; Hatton & Tector, 2010). The good news is that practitioners and advocacy groups have stepped forward over this past decade to meet that challenge and produce specially designed sexuality teaching resources.
While the effectiveness of these new sexuality education resources has not yet been a topic of empirical investigation, they do include teaching content and instructional approaches aligned with published recommendations (Koller, 2000; Loftin & Hartlage, 2015; Sullivan & Caterino, 2008; Tarnai & Wolfe, 2008; Travers & Tincani, 2010; Wolfe, Condo & Hardaway, 2009). The purpose of this article is to list and briefly describe new resources. The resources are organized into four broad content areas in sexuality education: self-care, relationship skills, body awareness and personal safety.
Teaching Resources for Self-Care
Self-care involves the behaviors needed to care for the social and physical health of one’s body. Some self-care behaviors directly promote physical health (bathing) and others hold social health as the primary focus (haircare). Self-care and hygiene routines can also provide opportunities to embed instruction about touch and safety for learners with ASD (Ballan, 2012).
- Mary Wrobel’s handbook, Taking Care of Myself – a healthy hygiene, puberty and personal curriculum for young people with autism, provides activity ideas and social stories about the body changes and self-care involved in growing up. Social stories and scripts have been suggested as appropriate teaching tools in context of autism and sexuality topics (Tarnai & Wolfe, 2008; Wolfe et al., 2009).
- Pat Crissey’s handbook, Personal Hygiene, What’s it got to do with me? is designed to teach a variety of hygiene behaviors to pre-teens and teens. These lessons are brief and each includes a post-test to assess learning.
- Hot off the press in 2015 were the Sexuality and Safety with Tom and Ellie series by Kate Reynolds. The books’ straightforward, yet detailed and relatable text reads similar to a social script. Ellie Needs to Go: A book about how to use public toilets safely for girls and young women with autism and related conditions walks a reader through the social and hygiene demands of using a public restroom. The corresponding Tom Needs to Go: A book about how to use public toilets safely for boys and young men with autism and related conditions tackles topics like urinals, respecting the privacy of others and hygiene. The Sexuality and Safety with Tom and Ellie are designed to be read by children and adolescents but can also be used by adults as teaching tools.
Teaching Resources for Relationship Skills
The concept of socio-sexuality education involves recognition that sexual health is strongly related to mental health and to social health. This conceptualization is particularly relevant to ASD with its associated social challenges (Loftin & Hartlage, 2015). All of the sexuality teaching resources covered in this article contain instruction about social behaviors and relationship interactions. These include skillsets such as discriminating between types of relationships (friends versus coworkers), appropriate behavior for relationships (flirting), safety in relationships (cell phone etiquette), and contexts influencing relationships (private versus public locations). The following resources focus on teaching social behaviors and relationships.
- Teaching and Learning Scotland produced a free, downloadable pdf entitled Relationships, Sexual Health and Parenthood Resource for Young People with Autism Spectrum Disorder. It offers lessons about friendship, appropriate behavior in relationships, reproductive health and sexual intimacy.
- Davida Hartman’s book Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders: A Professional’s Guide to Understanding, Preventing Issues, Supporting Sexuality and Responding to Inappropriate Behaviour has more than just the charm of a detailed title. This resource is unique in that it provides a curriculum based assessment that allows a professional to document, teach and track a learner’s sexual knowledge in key areas.
- Mike’s Crush: Understanding High School Relationships for Youth with Autism and Learning Disabilities is a curriculum with lessons and DVD instruction intended for adolescent to young adult viewers. There is also an available Mike’s Crush for Families which includes the DVDs and a related booklet. For a review of Mike’s Crush see Mitelman & Von Kohorn (2012).
- Another resource designed for high school and beyond is Intimate Relationships and Sexual Health: A Curriculum for Teaching Adolescents/Adults with High-Functioning Autism Spectrum Disorders and Other Social Challenges by Catherine Davies and Melissa Dubie.
Teaching Resources for Body Awareness
Body awareness includes knowledge about one’s body and body parts, knowledge about the changes that occur in the body and the corresponding behaviors associated with sexual maturation of the human body. The following resources address the knowledge and behaviors needed for body awareness.
- Charting the Course: A Family Toolkit to Help Youth with Autism Navigate Sexuality and Relationships is a comprehensive curriculum manual designed for parents and caregivers of growing youth with autism. It includes a number of scripted activities alongside tips and information. Charting the Course provides guidance on the potentially uncomfortable realities of sexual maturation such as making plans for erections at school or dealing with stained underwear during menstruation. A related online game called Boardwalk Adventure is included in the purchase of Charting the Course. Although this resource is intended for parents, it is also a valuable addition to any practitioner library.
- Another resource for parents is ATN/AIR-P Puberty and Adolescence Resource: A Guide for Parents, a recent addition to the library of free toolkits available through Autism Speaks Inc.
- Two resources for puberty and body changes by Davida Hartman are The Growing Up Book for Boys: What Boys on the Autism Spectrum Need to Know! and The Growing Up Guide for Girls: What Girls on the Autism Spectrum Need to Know! These two books are designed to be read by children and adolescents but can also be used as adult teaching tools.
- The Sexuality and Safety with Tom and Ellie series by Kate Reynolds includes books about body awareness and puberty: What’s Happening to Ellie? A book about puberty for girls and young women with autism and related conditions and What’s Happening to Tom? A book about puberty for boys and young men with autism and related conditions.
- Body awareness involves sexual self-awareness. Sexual self-awareness includes touch and stimulation. Both are addressed by Kate Reynolds and illustrator Jonathon Powell in the last of the three Tom and Ellie books. Things Tom Likes: A book about sexuality and masturbation for boys and young men with autism and related conditions and Things Ellie Likes: A book about sexuality and masturbation for girls and young women with autism take a pro-active, instructive approach to often ignored topics.
Teaching Resources for Personal Safety
Personal safety includes sexual safety. Although the data on incidence and risk of maltreatment vary, it is general accepted that individuals with ASD are vulnerable to sexual abuse (Brown-Lavoie, Viecili & Weiss, 2014; Edelson, 2010). The following two resources focus specifically on guidance for personal safety.
- Life Journey through Autism: A Guide to Safety produced by OAR (Organization for Autism Research)
- For this crucial topic I will share one resource that is not specifically designed for ASD. Frieda Briggs’ Developing Personal Safety Skills in Children with Disabilities is a rare resource for individuals with special needs. It provides information, guidance and activity suggestions for teaching children through young adults.
Conclusion
This article lists resources that provide guidance and scripted activities for teaching youth with ASD about sexuality. In addition to these resources, professional settings that offer socio-sexuality education for individuals with ASD should consider (1) State regulations and guidelines for sexual health education, (2) guidelines and resources for sexuality education and disability and (3) national guidelines for sexuality education and typical development. Also informative are the variety of 21st century books which explore sexuality and autism but are not structured teaching resources. A parent or professional approaching the topic of sexuality will likely use a combination of resources to individualize education for their child, student or client. One current challenge to individualization is the lack of investigation, discussion and resources addressing the role of culture when providing sexuality instruction in context of ASD.
In her extensive review of literature on sexuality and ASD, Gougen (2010) states, “As it currently stands, a gap exists between the perceived need for socio-sexuality education and its actual provision” (p.331). The resources listed in this article can be tools for practitioners, parents and individuals with autism to start bridging that identified gap between need and provision of instruction about socio-sexuality.
Britta Saltonstall, PhD, BCBA, provides private consulting and professional development trainings in the areas of specialized instruction and ethical practices in sexuality and behavior support. She can be reached at brittasalt@comcast.net.
Teaching Resource List
(In order of appearance in the article)
- Taking Care of Myself. Mary Wrobel (2003). Arlington, TX: Future Horizon.
- Hygiene: What’s it got to do with me? Pat Crissey (2006). London: Jessica Kingsley Publishers.
- Sexuality and Safety with Tom and Ellie series. Kate Reynolds (2015). London: Jessica Kingsley Press.
- Relationships, Sexual Health and Parenthood Resource for Young People with Autism Spectrum Disorder. Learning and Teaching Scotland (LTS). Available for download at http://www.educationscotland.gov.uk/resources/r/genericresource_tcm4587661.asp
- Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders. Davida Hartman (2013). London: Jessica Kingsley Publishers.
- Mike’s Crush. Social Signals, LLC (2011). http://socialsignalsed.com/cart66/#axzz4S2NLqbCl
- Intimate Relationships and Sexual Health: A Curriculum for Teaching Adolescents/Adults with High-Functioning Autism Spectrum Disorders and Other Social Challenges. Katherine Davies & Melissa Dubie (2012). Shawnee Mission, KS: AAPC Publishing.
- Charting the Course. Danya International, Inc. (2014). https://shop.danya.com/SearchResults.asp?Search=Charting+the+COurse&Search.x=0&Search.y=0
- ATN/AIR-P Puberty and Adolescence Resource: A Guide for parents. Available at: https://www.autismspeaks.org/science/find-resources-programs/autism-treatment-network/tools-you-can-use/atn-air-p-puberty-adolescence-resource
- The Growing Up Book for Boys. Davida Hartman (2015). London: Jessica Kingsley Publishers.
- The Growing Up Guide for Girls. Davida Hartman (2015). London: Jessica Kingsley Publishers.
- Life Journey through Autism: A Guide to Safety. Available by request at http://www.researchautism.org/resources/reading/index.asp#AGuideToSafety
- Developing Personal Safety Skills in Children with Disabilities. Frieda Briggs (2000). London: Jessica Kingsley Publishers.
References
Ballan, M.S. (2012). Parental perspectives of communication about sexuality in families of children with autism spectrum disorders. Journal of Autism Developmental Disorders, 42(5), 676–684.
Brown-Lavoie, S.M., Viecili, M.A. & Weiss, J.A. (2014). Sexual knowledge and victimization in adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(9), 2185–2196.
Edelson, M. (2010). Sexual abuse of children with autism: Factors that increase risk and interfere with recognition of abuse. Disability Studies Quarterly, 30(1), 16.
Gougeon, N. A. (2010). Sexuality and autism: A critical review of selected literature using a social-relational model of disability. American Journal of Sexuality Education, 5(4), 328–361.
Hatton, S., & Tector, A. (2010). Sexuality and relationship education for young people with autistic spectrum disorder: Curriculum change and staff support. British Journal of Special Education, 37(2), 69–76.
Koller, R. (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18(2), 125–135.
Loftin, R. L., & Hartlage, A. S. (2015). Sex education, sexual health, and autism spectrum disorder. Pediatrics and Therapeutics, 5(1), 1–6.
Mitelman, S., & Von Kohorn, O. (2012) Social Signals – Mike’s Crush. American Journal of Sexuality Education, 7(3), 282-284.
Nichols, S., & Blakeley-Smith, A. (2009). ‘‘I’m not sure we’re ready for this…’’: Working with families toward facilitating healthy sexuality for individuals with autism spectrum disorders. Social Work in Mental Health, 8(1), 72–91.
Sullivan, A., & Caterino, L.C. (2008). Addressing the sexuality and sex education of individuals with autism spectrum disorders. Education & Treatment of Children, 31(3), 381-394.
Tarnai, B., & Wolfe, P. S. (2008). Social stories for sexuality education for persons with autism/pervasive developmental disorder. Sexuality and Disability, 26, 29–36.
Travers, J., & Tincani, M. (2010). Sexuality education for individuals with autism spectrum disorders: Critical issues and decision making guidelines. Education and Training in Autism and Developmental Disabilities, 45(2), 284–293.
Wolfe, P. S., Condo, B., & Hardaway, E. (2009). Sociosexuality education for persons with autism spectrum disorders using principles of applied behavior analysis. Teaching Exceptional Children, 42(1), 50-61.