Today’s INSAR 2019 Special Interest Group (SIG) on Gender, Sexuality, and Romantic Relationships was led by Laura Graham Holmes and Jeroen Dewinter, and co-led by Anna van der Miesen. Essentially, relationships and sexuality are central to everyone’s health and well-being. But there isn’t enough useful research and materials available fo autistic people of all ages and abilities, their families, and healthcare professionals, and many have expressed the need for research and guidance. So that’s what the SIG leaders and the participants in this well-attended session talked about. Any errors or omissions in the highlights below are on us.
|SIG participants Sara L, Dori Z, Jac dH, and Christina N, in discussion
[image: Four people of varying gender identities and neurotypes,
talking at a conference table.]
Last year’s Gender, Sexuality, and Romantic Relationships INSAR SIG was about determining the most important issues for the autistic community, in terms of gender and sexuality and relationships. The ultimate goal for this SIG is to create a resource hub.
The SIG leaders started out with the World Health Organization (WHO) guidelines:
“Sexual health is a state of physical, mental and social well-being in relation to sexuality. It requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.”
Sexuality is a holistic concept. It’s not just about risk reduction. It’s also about living good lives.
Sexuality is for everyone, not just those who have relationships with partners.
Gender is separate from sexuality. A useful resource is The Gender Elephant, “an educational tool that can be used by anyone to help learn and teach the concepts of gender identity, gender expression, sex, physical attraction, and romantic attraction.”
Most available research about autism and sex is about sexual behavior, knowledge, and attraction, and also identifying as LGBTQ+. Which is good, bt we want more research on matters that can contribute to autistic people’s quality of life.
We need to incorporate concepts like self-determination.
Previous autism & sexuality SIGs revealed three major areas of interest:
- Getting a better understanding of autism, sexuality, & relationships.
- Supporting sexual wellbeing and relationship satisfaction.
- Autistic perspectives in research, healthcare, and society.
We need to take this research on autistic sexuality realities, and bring it back to the community to help counter myths about autism and sexuality, and get people the resources that will actually improve their life quality.
Working closely with autistic people on autism and sexuality matters makes research better and leads to more useful supports.
Commentary: The best information about sexuality and autism is coming from the autistic and advocacy communities right now, not the research community. We need more practical and applied resources.
Seems like lots of people in the autism and sexuality SIG are looking for collaborators. Some folks are working on tools to help autistic young adults have open conversations about autism and sexuality and their personal experiences.
We need to help clinicians break down the uncomfortable conversations about autism and sexuality, especially since these topics should but rarely come up in autism evals like the ADOS. How do we get relevant gender and sexuality questions into autism studies other people are already doing?
We then moved to the discussion group on including and reaching non-speaking people and people with intellectual disabilities (ID).
Sara Luterman talked about the utter lack of sexual resources for people with ID resources, especially for LGBTQ+ needs. People with ID are complicated sexual being too, and autistic people are more likely to be LGBTQ+.
Carol Greenburg, who is both autistic and the parent of a partially-speaking autistic teen, mentioned Autistic people with ID need to learn about health boundaries: Pulling a girl’s ponytail because a kid is attracted to her is NOT OK, with kids w/ID or no.
Sara Luterman reminded group that teens look at pr0n! So how do we support that healthily?
Parent reports on sexuality are NOT going to be accurate. Again, this is true for autistic people w/ID and people with neither of those traits.
To teach sex ed properly, we have to talk the variety of ways in which people express their sexuality. Parents tend to be OK with it, sort of, until LGBTQ+ and tech (vibrators etc.) aspects arise. Then it’s considered off-color.
What teaching health sexuality boundaries for people with ID can look like: IT’s OK to take pictures of your own bits, but it is NOT OK to send those pictures to other people without their consent.
What do visual supports for people with ID, in terms of sexuality materials, look like? Is there a SymbolStix symbol for a penis? And visual materials like po_rn are not realistic at all.
We also need good guides about things like masturbation, and consider that parents can introduce the materials, but then have the teens/clients watch the materials on their own. (We recommend Diverse City DVDS) A problem, though: many group homes are run by religious groups, and/or only have one computer in a public place. This means that not only do autistic people not have access to sexuality materials, but if they do, there’s no place to use them in private.
Another autism and sexuality complication for autistic people, from Sara Luterman: When you need more support, then functionally, you have less privacy.
Also: Even in mainstream sex ed, there’s a lot about how to say NO, and not a lot about how to say YES.
Sexuality is not unhealthy! So let’s talk about pleasure and well-being instead.
We also need more training materials about sexual identity matters, as those tend to be lacking in autism contexts.
John Elder Robison: Is the autism neurotype a key matching factor for successful relationships for #autistic people?
Also the complementary neurotype of an emotionally aware and sensitive person that can understand autistics
— John Elder Robison (@johnrobison) May 4, 2019
We need a self-advocacy curriculum for kids, because sometimes it’s not safe for adults to be involved, and kids need to know when and if to approach adults about sexual safety matters.
Kidpower California was suggested as a resource, but we have not verified it.