I have been reading and thinking about health and sexual education for children on the spectrum because I have several clients who are right around the pre-puberty and puberty age and who are starting to have problems with touching themselves inappropriately in public, touching others, acting out, increased anxiety and dysregulation.
On these children's IEPs, there are no goals or objectives to learn about their bodies, boundaries, health, sexuality, sex, or sexual health. When a child on the spectrum attends an inclusive program, they are exposed to the mainstream programming that addresses these issues, if it is offered. In my experience, children who require more restrictive placements and are either in sub-separate programs or in specialized schools, do not have any programming in this area. When these children approach puberty, it is uncommon to hear their IEP team members discussing how it affects their daily experience, life and behavior. It is also uncommon to hear discussions of how to educate and prepare these children for personal and sexual relationships that they might have in the future. Why is there such a blindness to these topics?
There are a number of myths and misconceptions about people with ASD and sexuality.
People on the spectrum do not want to have relationships due to their autism;
People on the spectrum aren't capable of having relationships due to their social challenges. They are childlike and socially immature;
People on the spectrum cannot emotionally connect with a partner;
People on the spectrum do not have sexual needs and are not capable of managing a sexual relationship with another person;
Discussing sexuality and sex with children on the spectrum will create more problems for them;
People on the spectrum need to be protected and sheltered;
If children on the spectrum are in inclusive classroom, the general curriculum will be sufficient for them to learn about relationships, sexual health, sexuality, sex and safety;
If a person on the spectrum has a sexual relationship, it will be a heterosexual one;
People on the spectrum will want to have relationships only with other people on the spectrum.
The truth is that autistic adults have the same breadth and depth of sexual interests as neurotypical adults. The level of engagement in sexual behaviors varies based on living situation, privacy, availability of education, access to peers, personal preferences, etc. Among children, those with cognitive delays are reported to have less knowledge and more socially inappropriate sexual behaviors. Parents and teachers share these observations. Heightened concerns are reported for children with higher cognitive functioning who are more likely to socialize without supervision and, as adults, live in community settings.
Because these myths are so firmly ingrained, people on the spectrum are often seen as asexual and also uninterested in romantic relationships. Additionally, parents can have a difficult time educating their children about sexuality and sex, and thinking about what healthy sexuality can look like for their children. Parents' reluctance to talk about sexuality and sex can also be explained by their fear of their children being victimized, or perceived as aggressors due to the challenges related to autism.
These misconceptions and caregiver discomfort have many consequences. First, lack of knowledge in these areas makes individuals on the spectrum vulnerable to being in unhealthy relationships and to being sexually victimized. Second, lack of understanding of proper personal and sexual boundaries can also put one at risk of becoming a sexual aggressor. Some people on the spectrum do not understand the concept of consent, age of consent, and the issues involved in using various types of sexual materials, some of which can be illegal. They are at risk for committing a crime due to lack of information that was presented in an accessible way. Third, lack of education in these areas makes it hard to have fulfilling personal and sexual relationships, as well as understand and meet one's own sexual needs in an appropriate way. In absence of proper guidance, education and training information about sexuality and sex can be limited to the distorted depictions available through the media and picked up from random sources. Fourth, not knowing one's own body and not being able to meet one's own sexual needs can result in inappropriate and even aggressive behaviors. It can also result in poor health and well-being, poor hygiene, and disease.
Sexuality and sex are a part of human health continuum that affects overall quality of life. And everyone deserves to have a life that is as full and rich as they desire and is possible.
Reading about high victimization rates of children and women on the spectrum, and the factors that contribute to those rates; reading accounts of autistic individuals about their own experiences, and reading popular and research articles lead me to believe very strongly that every child on the spectrum should have health and sex education as a part of their transition planning.
Some of the topics to be covered suggested by researchers and practitioners are:
masturbation and boundaries around masturbation
the sexual life cycle from birth to death
male and female social/sexual behavior
dating, marriage, parenting
assertiveness skills training
reproductive and parenting rights, including birth control.
Some researchers and practitioners suggest that the topics that need to be covered for the children on the spectrum are the same as for their peers, and should be based on a child's age. The specific format and methodology of how this information is presented depends on the child's autistic profile. Some others recommend that each child be assessed individually for the type of information to be presented based on the realistic expectations for each child. For example, children who are not perceived capable of dating would not be taught dating skills.
The instruction can be a part of a child's IEP plan. It should be conducted by qualified and skilled professionals. Parents can support this at home if they choose to. A collaborative approach to health and sex education is ideal.
There is a consensus that sexual education is a right of each autistic person, and that all autistic individuals require specialized education in this area. Autistic persons should be exposed to the topics beyond basic sexual information and taught within the norms and values of the communities where they live.
For any child on the spectrum, even those with strong verbal skills and without cognitive delays, teaching on these topics needs to be explicit, consistent, curriculum-based, and with information broken into small parts. Generally, it should be multi-modal and can include use of role play, books and video clips, including documenting real interactions and reviewing for discussion. It is important to practice in real life situations as appropriate and possible. For each topic, there should be many teaching opportunities and many opportunities to check knowledge.
Sexuality and Adolescents with Autism. Rebecca Koller. Human Sciences Press, Inc.Sexuality and Disability, Vol. 18, No. 2, 2000.
Self-assessed sexuality in young adults with High-Functioning Autism.
Volume 5, Issue 1, January–March 2011, Pages 614-621.
Parental Perspectives of Communication about Sexuality in Families of Children with Autism Spectrum Disorders. Ballan, M.S. Journal of Autism and Developmental Disorders, 42, 676–684 (2012).
Sexuality in a community based sample of adults with autism spectrum disorder
Sexuality in Adolescent Boys with Autism Spectrum Disorder: Self-reported Behaviours and Attitudes. Jeroen Dewinter, Robert Vermeiren, Ine Vanwesenbeeck, Jill Lobbestael & Chijs Van Nieuwenhuizen. Journal of Autism and Developmental Disorders, volume 45, pages 731–741(2015).
Teachers’ perspectives of the sexuality of children with autism spectrum disorders. Efrosini Kalyva. Research in Autism Spectrum Disorders, 4 (2010), 433–437.
Sexuality Education for Individuals with Autism SpectrumDisorders: Critical Issues and Decision Making Guidelines. Jason Travers & Matt Tincani. Education and Training in Autism and Developmental Disabilities, 2010, 45(2), 284–293.
Sexuality in autism: hypersexual and paraphilic behavior in women and men with high-functioning autism spectrum disorder. Daniel Schöttle, Peer Briken, Oliver Tüscher, and Daniel Turner. Dialogues in Clinical Neuroscience. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5789215/#!po=59.7561
Autism Spectrum Disorder, Adolescence, and Sexuality Education: Suggested Interventions for Mental Health Professionals. Michelle S. Ballan & Molly Burke Freyer. Sexuality and Disability, volume 35, pages 261–273(2017).
Bennett M., Webster A.A., Goodall E., Rowland S. (2018). Intimacy and Romance Across the Autism Spectrum: Unpacking the “Not Interested in Sex” Myth. In: Life on the Autism Spectrum. Springer, Singapore