There is currently a serious lack of research relating to sexuality, sex education and ASD. Out of under 40 published studies between 1992 and 2013, just half constitute research studies, five of which are case studies. Most aim to investigate whether people with ASD display sexual behaviors or have sexual knowledge. However, the bulk of the research only looks through the eyes of others (e.g. parents or caregivers) and so must be taken with a very large pinch of salt.
Methodological and validation challenges are also common, with issues including small sample sizes, lack of control groups and randomization and questionable data analysis. In many, the aims are unclear, bias is not critically examined and there is a general lack of discussion about the appropriateness of the research design. The studies also vary in their topics, participants and methodology meaning that generalizability is limited and there is a significant male sexuality bias (perhaps understandable given the male: female ratio within ASD). Some studies make the distinction between subjects who are low or high functioning (apologies for using those awful labels) but little argument is given to the nature of ASD, i.e. how different individual presentations can be despite these labels and how inconsistently these labels are attributed. There are also issues with the case studies, which focus on low incidence, complex issues (often contextualized as ‘problematic sexual behaviors’) which are not put into context of the general population or even people with ASD.
However, there are a few studies which are methodologically robust (Mehzabin and Stokes 2011; Nichols and Blakeley-Smith 2010; Stokes and Kaur 2005; Stokes, Newton and Kaur 2007; van Bourgondien et al. 1997) and others that are valuable in terms of increasing knowledge in an under-researched field (Ballan 2012; Hatton and Tector 2010; Ray et al. 2004). Although not a research study, Gougeon’s (2010) ‘Sexuality and autism: A critical review of selected literature using a social-relational model of disability’ deserves credit as a well written and thoughtful summary of the relevant research.
So What Can Be Learned From the Research Base?
- People with ASD display typical sexual needs, a wide variety of sexual behaviors, wish to engage in intimate relationships and are neither hypersexual or asexual.
- People with ASD can display what are often considered ‘problematic’ sexual behaviors.This appears to be largely due to dificulties with social and communication skills.
- There is insufficient availability of suitable materials designed for parents, professionals or individuals themselves for those looking to support the development of a healthy sexuality and intimate relationships in children or adults with ASD. (If you are looking for what materials are available, check out http://www.autismsexeducation.com)
- There are societal barriers in place that prevent sexuality and relationship education from happening.
- Caregivers are aware of, and concerned for, the sexual needs of their children. Primary concerns noted by parents thus far surround their children’s safety and others’ understanding of their behaviors. Ballan (2012) reported that parents expressed a strong desire to communicate with both their children and professionals about sexuality, with the majority indicating that they would like to learn from professionals how to better communicate with their children about sexuality issues.
- Individuals with ASD have difficulty translating theory into practice, i.e. using the information that they have received about sexuality, relationships and appropriate behaviors in their everyday lives. Therefore, they may be aware of sexual terminology, but do not display a complex understanding of these terms. This gap between knowledge and practice can be a common difficulty for many people on the ASD spectrum.
- There is a demonstrated need for evidence based sexuality and relationship education programs and in particular parent sexuality training programs. Therefore, for systematic and proactive sex education to be provided, the needs of parents and teachers should be addressed, alongside the needs of children with ASD. However, while much of the research conducted thus far indicates the need for sex education, by the nature of the research and the language used the studies also concurrently perpetuate the stigma of sexuality as a problem in need of management.
- As is the case for individuals with ID, the sexual rights of individuals with ASD are routinely denied.
- Lastly, a consistent finding is that the sexuality of individuals with ASD is addressed from a problem based, deficit, perspective. Sexual ‘problems’ are questioned within a framework of deviancy and a discourse of fear pervades. Terms such as ‘obsession,’ ‘stalking,’ and ‘fierce attachment’ are routinely used (as opposed to ‘falling in love’ or ‘having a crush’), implying a pathological quality to how a person with ASD behaves and feels, rather than behavior that may be arising from a lack of experience and immaturity compared to their peers.
- Ballan, M. (2012) ‘Parental perspectives of communication about sexuality in families of children with autism spectrum disorders.’ Journal of Autism and Developmental Disorders 42, 5, 676-684.
- Galluci, G., Hackerman, F. and Schmidt, C.W. (2005) ‘Gender Identity Disorder in an Adult Male with Asperger Syndrome.’ Sexuality & Disability 23, 1, 35-40.
- Gilmour, L. Schalomon, P.M. and Smith, V. (2012) ‘Sexuality in a community based sample of adults with autism spectrum disorder.’ Research in Autism Spectrum Disorders 6, 1, 313-318.
- Griffin-Shelley, E. (2010) ‘An Asperger’s adolescent sex addict, sex offender: A case study.’ Sexual Addiction and Compulsivity 17, 46-64.
- Haracopos, D. and Pedersen, L. (1992) ‘Sexuality & Autism, Danish Report.’ United Kingdom. Society for the Autistically Handicapped. (unpublished)
- Hartman, D. (2013) ‘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’ Behaviours.’ Jessica Kingsley Publishers: London.
- Hatton, S. and 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.
- Hellemans, H. et al. (2007) ‘Sexual behavior in high-functioning male adolescents and young people with Autistic Spectrum Disorder.’ Journal of Autism and Developmental Disorders 37, 260 – 269.
- Hellemans, H. et al. (2010). ‘Sexual behavior in male adolescents and young adults with Autism Spectrum Disorder and Mild/Borderline Mild Mental Retardation.’ Sexuality and Disability 28, 93-104.
- Kalyva, E. (2010) ‘Teachers’ perspectives of the sexuality of children with Autism Spectrum Disorder.’ Research in Autism Spectrum Disorders 4, 433-437.
- Konstantareas, M. and Lunsky, Y. (1997) ‘Sociosexual knowledge, experience, attitudes and interests of individuals with autistic disorder and developmental delay.’ Journal of Autism and Developmental Disorders 27, 397-413.
- Mehzabin, P. and Stokes, M. (2011) ‘Self-assessed sexuality in young adults with high functioning Autism.’ Research in Autism Spectrum Disorders 5, 614-621.
- Nichols, S. and Blakeley-Smith, A. (2010) ‘I’m not sure we’re ready for this…: Working with families towards facilitating healthy sexuality for individuals with autism spectrum disorders.’ Social Work in Mental Health 8, 72-91.
- Ousley, O. Y. and Mesibov, G. B. (1991) ‘Sexual attitudes and knowledge of high functioning adolescents and adults with autism.’ Journal of Autism and Developmental Disorders 21, 471-481.
- Ray, F., Marks, C. and Bray-Garretson, H. (2004) ‘Challenges to treating adolescents with Asperger’s syndrome who are sexually abusive.’ Sexual Addiction and Compulsivity 11, 265-285.
- Realmuto, G. M. and Ruble, L. A. (1999) ‘Sexual behaviors in autism: Problems in definition and management.’ Journal of Autism & Developmental Disorders 29, 2, 121 – 127.
- Ruble, L. A. and Dalrymple, N. J. (1993) ‘Social/sexual awareness of persons’ with autism: A parental perspective.’ Archives of Sexual Behavior 22, 3, 229 – 240.
- Stokes, M. and Kaur, A. (2005) ‘High-functioning Autism and sexuality: A parental perspective.’ Autism 9, 3, 266 – 289.
- Stokes, M., Newton, N. and Kaur, A. (2007) ‘Stalking, and social and romantic functioning among adolescents and adults with Autism Spectrum Disorder.’ Journal of Autism and Developmental Disorders 37, 1969-1986.
- Tissot, C. (2009). ‘Establishing a sexual identity: Case studies of learners with Autism and learning difficulties.’ Autism 13, 6, 551-556.
- van Bourgondien, M., Reichle, N. and Palmer, A. (1997). ‘Sexual behavior in adults with autism.’ Journal of Autism and Developmental Disorders 27, 113-125.