INSAR 2019: Gender, Sexuality, and Romantic Relationships

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."

The Gender Elephant teaches gender and romantic concepts with simplified visuals
[image: Illustration of a pink elephant in a gray suit, next to a visual chart explaining gender
 identity, gender expression, sex assigned at birth, physical attraction, & emotional 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:

1. Getting a better understanding of autism, sexuality, & relationships.
2. Supporting sexual wellbeing and relationship satisfaction.
3. 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.

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Under a Double Rainbow: Autism and LGBTQIA+

Photo © Ted Eytan | Creative Commons/Flickr
[image: Multiracial crowd rallying with flags and signs behind a banner reading
"Trans Solidarity against transphobia for justice".]

Maxfield Sparrow
unstrangemind.com

Ten years ago, I wanted to write a paper about autism and gender issues for a gender and sexuality conference at which I had previously presented. I started the research, then dropped into a depression after realizing how little material was available, and that the existing research about autism and gender was both dismal, and erasing. The medical journals talked about transgender autistic children as if their gender issues were delusions, mere symptoms of their autism. I never wrote that paper.

Today, not only is there good autism information available, but the “double rainbow” of being both autistic and LGBTQIA+* is just beginning to be more accepted and understood. We have a long way to go, but people are beginning to understand that autism does not guarantee asexuality, nor are Autistic people’s identities always heterosexual and cisgender**.

In fact, there’s even an organization, Twainbow, started by Louis Molnár in 2015. Molnár was diagnosed with Asperger’s in 2013, and noticed both the dearth of resources for “double rainbow” people, and the similarities between coming out of the closet as a gay man and coming out of the closet as Autistic. Writing in The Advocate, Molnár said,

“For many decades the blame was on just about anything from poor parenting to vaccines. Homosexuals were subjected to behavioral conversion therapy, shock therapy, injections, beatings, removal from imaginary catalysts, and social shaming to drive the gay out of them. These very things currently happen in the autism world.”

Steve Silberman, author of the autism and neurodiversity history best-seller NeuroTribes, spoke about Twainbow, saying, “Any organisation that fights for the civil rights of LGBT+ folks on the spectrum, raises awareness of the special challenges and joys of living under the double rainbow, promotes pride and self-confidence, builds alliances, and condemns bullying, systemic ableism [i.e., the discrimination of people with disabilities] and homophobia is doing really important work.” Silberman is right: acknowledging, understanding, and supporting our “double rainbows” is a crucial part of autism acceptance and raising Autistic children to be happy, healthy, fulfilled Autistic adults.

If you are an Autistic person who lives under the double rainbow, rejoice! You are not alone! Molnár estimates that over five million people world-wide are “double rainbows.” I would not be surprised to learn that Molnár’s estimate is far lower than the reality. Last year, I did a literature review and analysis of the research on autism and gender variance, and discovered that people who were surveyed at gender clinics were ten times more likely to be diagnosed or diagnosable with autism, compared to the general population. Additionally, Autistic people are seven times more likely to be gender variant than the general population. And those figures are just for gender issues, independent of sexual orientations.

If you are a parent of an Autistic person who is or might be a double rainbow, you may be concerned. Either you are worried for your child or you are worried for yourself (or both.) You might worry that your child is already facing so much stigma and discrimination due to being Autistic and a non-mainstream sexuality or gender will make life that much harder for them. You also might be struggling with worries about attitudes from extended family or from those in your family’s religion. You also might be worrying about your ability to parent a child who has “fallen so far from the tree.” If you aren’t Autistic and you are heterosexual and cisgender, you might worry about your ability to support and mentor a child whose life experiences are so very different from your own.

When it comes to fears of stigma and ostracism from society, family, school, church, and more, I recommend finding other parents in your situation to share hopes and fears, tips, and ideas. While there are not yet many organizations supporting double rainbows and our families, if you are in the United States, you can meet other parents of LGBTQIA+ children at your local chapter of PFLAG (Parents and Friends of Lesbians and Gays). Of course those parents may not be familiar with the needs of double rainbows like your child, but they are great people to talk with about issues of rights, safety, stigma, and more.

Some other organizations that might be helpful to you and your child include True Colors, GLSEN, and Queerability in the U.S.; Stonewall, Mermaids, and Gendered Intelligence in the UK; and Minus18 in Australia.

Some other important things to remember as the parent of a double rainbow or potential double rainbow:

• Be open to listening to your child, even when the topics get difficult. LGBTQIA+ interests might indicate something about your child’s identity...or not. Listen without judgment, and let your child lead the way with the conversation. Ask questions that show your interest but try not to jump to assumptions about your child either way.
• Be ready to hear some challenging language. Your child might use words that make you uncomfortable like “queer” or even words that are considered slurs among some people, like “faggot,” “dyke,” or “tranny.” If your child identifies with a challenging word, ask if you should also use that word or if your child wants you to use a different word. Sometimes minority groups reclaim language for their own use but do not want people who are not a member of that minority to use those words. Even if the words make you uncomfortable, strive to keep any sense of judgment out of your questions and comments.
• Your child may need gender or sexuality support at school. This could include a gender neutral bathroom to use, uniform change or discussion of clothing changes, social stories about gender and/or sexuality roles and issues, staff training, and more. Joe Butler goes into more detail on some of these points in the article Supporting Trans and Gender Questioning Autistic Pupils.
• Seek peer support and double rainbow mentorship if possible. In addition to some of the regional organizations listed above, some writers to look at include Caroline Narby and her Double Rainbow series; Dr. Dawn Prince-Hughes who writes in her memoirs about life as an Autistic lesbian; John Scott Holman, a now-deceased gay Autistic man who wrote frankly about his struggles with addiction as well as the challenges and joys of being a double rainbow; Lydia X. Z. Brown, a genderqueer activist and law student; Wenn Lawson, who wrote for years about life as an Autistic lesbian before coming out transgender.   
• Be prepared to learn. You might not be aware, for example, that some transgender people are non-binary, meaning they do not identify as either male or female. Some transgender people do not seek to medically transition their bodies. Some people have a different identity for their sexuality and their romantic interests, leading to combinations like “asexual homoromantic.” If you’ve never learned about much beyond gay/lesbian/straight/transgender, be prepared to be a little overwhelmed by the information and options out there. You’ll need at least a surface understanding in order to help your child navigate to an understanding of where they stand in all the gender, sexuality, and relational spectrums.
• You don’t need to be told this, but I’m rounding out the tips with it anyway because it’s so important: love your child. You already know, having an Autistic child, that parenthood carries no guarantees of what sort of family you will end up building. Odds are, you didn’t expect an Autistic child, but you love them so much and would never erase them to try to get a non-autistic child instead. Take that love and acceptance with you when helping your child figure out their gender and sexuality. Maybe your child is cisgender and heterosexual. Maybe not. So many of us are LGBTQIA+ that you serve your child’s best interests by assuming they might turn out to be any of the identities represented in that acronym, just in case they do. If your child turns out to be a double rainbow (or even a triple rainbow like me: Autistic, Transgender, and Gay) you’ll want to be ready to be there for them, offering the same love and guidance you’ve offered through every other facet of their beautiful life.

----

*LGBTQIA+ is an acronym meaning lesbian, gay, bisexual, transgender, queer, intersex, asexual, and others not specifically named, leaving room for increased future understanding of non-mainstream gender and sexual identities

** Cisgender or 'cis' is a word that means identifying with the gender a person was presumed to be when they were born, and people looked at their genitals then declared with excitement, “it’s a boy!,” or “it’s a girl!” If that presumption turns out to be what the baby grows up to feel comfortable with, then that person is cisgender rather than transgender.

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Elizabeth Bartmess Interviewed on autchat, Autistic Community, and Autism in Fiction

Elizabeth Bartmess runs the autistics-and-cousins autchat discussions on Twitter, and also writes and critiques autism-themed fiction. We talked with Bartmess about why autchat matters, sometimes in surprising ways, and also about why "'Autistic character learns empathy' is the character arc I most wish would go away."

Elizabeth Bartmess
[image: photo of a white person with short
light brown hair and glasses, smiling.]

Thinking Person's Guide to Autism: Tell us about autchat. What is it, exactly? 

Elizabeth Bartmess: Autchat is a Twitter hashtag by and for autistic people and "autistic cousins"—people who have similar experiences due to other disabilities like hydrocephalus, cerebral palsy, ADHD, etc. We welcome people whether they are formally diagnosed, self-diagnosed, or wondering whether they might be autistic or similar.

We have weekly hour-long chats on our experiences, with topics such as  accommodations, burnout, and sexuality. During a chat, the moderator asks 4-5 questions and participants answer them. We post the questions online ahead of time for people who need more time to think, and people can chime in with answers any time during the week. Outside of chats, people may also use the hashtag to ask questions or post information of interest. We save transcripts of the chats to our website, to help keep a record of our collective knowledge.

The chats are Sundays 4pm Eastern, and the website has information on how to participate. We ask people who are neither autistic nor autistic cousins to refrain from posting on the tag, but everyone is welcome to read along or to check out the archives.

TPGA: How did autchat come into being? Was it a collaboration or a solo project?

Bartmess: Autchat came out of the autistic community on Twitter in February 2015. I'd been on Twitter for about a year then, and had met a lot of other autistic people and been having great conversations with them. Twitter is a very ephemeral medium, though—you have a conversation, it scrolls off your timeline, and you stop thinking about it. And if it's just between you and someone else, people who don't follow both of you won't see the conversation on their timelines. So I asked whether other people would mind if we started tagging some of these conversations so other people could find them by searching for the tag.

A number of people were interested. We came up with the #autchat tag, decided to try weekly chats, and collaborated on planning. The primary people involved back then were me, @AskCisco (who had been thinking along similar lines), @Ask_anAspergirl, and @erabrand, who also did our website. For a while, Cisco also ran a second autchat session on Sundays, where we revisited previous topics.

We've now been running for over two years have have had over a hundred and sixty chats on more than eighty topics. Some other projects have also come out of people who either met through autchat or were involved in planning it, such as Autistic Flappy Hour, a podcast run by autchat co-founder @AskCisco and two other autchat regulars; and the #AutismMeans hashtag series, run by me, @FilmSpectrum, and @rsocialskills. @neurocouture, an autchat participant, has also run a number of Twitter chats on autistic burnout on the #AutBurnout tag.

TPGA: Can you tell us about some specific instances in which you've seen autchat make a difference in someone's life, or in which you've heard it helped a person through a tough spot?

Bartmess: Specific instances blur together in my mind because there have been so many of them! For some people, it's their first foray into autistic community. Many people have said it's helped them with self-understanding, self-acceptance, and coping skills. Other people have said it's helped them get through their diagnostic process, or help make sense of things after a diagnosis. I know many people make friends through the chats and develop a sense of belonging to a community. I've also seen people say autchat has helped widen their understanding of what it means to be autistic. There are also some good stories in this post that @AskCisco wrote about autchat's origins.

TPGA: What are some examples of autchat scenarios that surprised you, or widened your understanding of other autistic people's experiences?

Bartmess: I was surprised by how central stimming is for many people, both with respect to coping and with respect to social experiences and the need for acceptance. My own experiences have centered primarily on difficulty with social scripting and figuring out how to respond to social cues—not so much now but certainly up through my early thirties—and I thought that would be more universal than it was. I also wasn't expecting sensory issues to be as salient a feature of many people's experiences as they are.

Another thing that surprised me was experiences with gender and gender identity. Before becoming involved in Twitter's autistic community, and in autchat, I hadn't realized how common it was for autistic people to be trans and/or nonbinary, or gender non-conforming.

TPGA: Are there any autchat topics you haven't broached yet? If not, why?

Bartmess: I have a list of almost twenty topics that have been suggested that we haven't covered yet (two of which I've thought of while answering these questions!), so the most common reason to not cover topics is just that I haven't gotten around to them yet.

There are some topics I would particularly like to cover, but haven't attempted. The biggest one is chronic interpersonal trauma, specifically abuse and bullying. I write most of the questions for the the weekly chats, and I try to write them so that participants can come up with useful things to take away. I don't know how to do that for chronic interpersonal trauma, in part because what we need often doesn't exist. There's very little effective treatment for chronic trauma specifically, and the treatments that have been developed are not widely available and don't take into account autistic and similarly neurodivergent people's specific needs and vulnerabilities, even though we experience abuse and bullying at high rates.  My worry is that because what our community really needs—effective and widely available treatment and support—largely aren't available to us, we'll wind up at the same place we started from at the end of the chat, and possibly in more distress.

There are also some topics I would like to run where I don't have the relevant personal experience to write good questions. We've had topic requests for co-occurring conditions like eating disorders, personality disorders, plurality, and psychosis. I'd also like to have a chat on race and ethnicity and how that affects experiences of being autistic or similar. I've been looking for volunteers to do these for a while, but have not had any success yet.

I'd also like to have a chat on autistic cousins and autistic communities. Communities formed by autistic people can be quite strong and sometimes also insular. That can be hard on neurodivergent people who have a lot in common with autistic people, but who are not necessarily invited to autistic communities and activities and may not feel comfortable joining in even when they are. I haven't had that chat yet because autchat's participants are almost always autistic, and the chat would need to primarily involve autistic cousins speaking and autistic participants listening. I don't have the cross-community connections to network for that and am not very good at reaching out. (I am open to collaboration, though. If someone who is reading this is a disabled person who shares significant similarities in experience with autistic people and would like to develop a Twitter chat or chats on this, either for autchat or as a separate chat, DM the mod account on Twitter at @autchatmod or email autchatmod@gmail.com.)

TPGA: How do you think people who aren't themselves autistic can benefit from reading the autchat archives?

Bartmess: Some of the benefits for non-autistic people are the same as for autistic people: A better sense of autistic people's similarities to and differences from non-autistic people, and a better sense of autistic people's similarities to and differences from each other (as the saying goes, if you've met one autistic person, you've met one autistic person). Autistic cousins may get some of the same benefits that autistic people do, by seeing experiences they personally identify with, or ideas for new coping skills.

I think many people who read the archives, whether they are autistic or not, will be surprised by the range of topics and the many ways those issues affect our lives. For example, many people don't know that sleep difficulties, or differences in pain perception and expression, or difficulty eating, are common for autistic people, even if we know those are issues for ourselves personally, or for an autistic person we know. Popular representations of autism often focus on a limited number of topics, and have a narrow scope even for those topics.

TPGA: You are also a fiction writer, and a contributor to Disability in Kid Lit. What are some stereotypical autistic character arcs you wish would go away?

Bartmess: "Autistic character learns empathy" is the character arc I most wish would go away. There's a common and inaccurate belief that autistic people don't have empathy. While some autistic people do describe being lower in empathy than neurotypical people, it's very common for us to have painfully high levels of empathy. It sometimes looks like we have less empathy because we have difficulty intuiting how a given person wants us to express that empathy, and asking outright can sometimes make people angry. It's also hard to enact empathy when we're overstimulated or anxious or overwhelmed, and our energy is so taken up by the immediate situation that we have nothing left to give.

These are both situations where empathy and understanding from other people can help us get to a position where we can return that empathy and understanding. But it's common for us instead to hear that we're not empathic enough, and if we really cared about other people, we'd do what they want. Hearing that—whether in real life or in fiction—is frustrating, not just because it's inaccurate but because it means nobody gets what they what! And that belief—the belief that we lack empathy—is also sometimes used as justification for treating us badly.

Another character arc I would like to go away is one where we learn to "push through" or learn to tolerate things that, in real life, are either not good ideas for us to try to push through, or are not actually things it is possible for us to learn to tolerate. This is a variation on a larger theme where character growth is shown as becoming more neurotypical. That's depressing to read because, while autistic people continue to learn skills throughout our lifetimes, we don't become neurotypical; what looks like becoming more neurotypical / less autistic is often compliance with expectations that we act neurotypical regardless of the cost, and the cost can be very high.

A third character arc I'd like to go away is actually not a character arc at all—it's the absence of one, where an autistic secondary character is included in a story so that neurotypical characters can show they're good people, or included to provide conflict for other characters to work through (often in the form of being embarrassing to other characters in front of their friends).

When I wrote that article you linked to in the question I was thinking of things not to do—and I think if I wrote it again I'd focus more on arcs I would like to see, or like to see more of. (I still like that article and I'm glad I wrote it, but I wish I'd included more positive things.)

One thing I'm struck by in fiction is the rarity of autism-related arcs that are very common in real life. For example, realizing you are autistic, or being diagnosed, as a teen or adult, and re-evaluating your life in light of that. Fiction often shows us as already diagnosed (and in fact I can only think of one major exception in kid lit—Rogue, by Lynn Lachmann-Miller, an autistic author, although there are some books that never identify us as autistic at all).

Another real-life arc is joining autistic community; many books have one autistic person and that's it, although there are some great exceptions, especially by autistic authors. Other real-life arcs include learning to better advocate for your needs and improving your self-care skills, and learning coping skills for things that don't show up in fiction much, like autistic inertia and other aspects of executive dysfunction, or motor issues.

All of those arcs involve the opposite of becoming more neurotypical, and in real life they often involve becoming more visibly autistic. So they don't necessarily look like character growth to people who haven't lived them, or who aren't on close terms with people who have. But they're some of the most important and helpful character growth we can have.

And, of course, autistic people go through character growth that isn't specifically about being autistic, and I'd love to see more of those arcs, too.

TPGA: Who is your favorite autistic character in literature, and why? What resources would you recommend for people who want good portrayals of autistic characters?

My favorite autistic character is Oscar from Anne Ursu's middle grade book The Real Boy, for many reasons. He has domains of competence and difficulty, and he has adventures that are not specifically or exclusively about being autistic—while still being portrayed as autistic throughout—and winds up being a hero. The book is very good at portraying his internal experiences, and some of his difficulties with social cognition are quite close to ones I had when I was younger.

My favorite resources for good portrayals of autistic characters are Disability in Kid Lit (which includes reviews of both good and less good portrayals), and Ada Hoffman's Autistic Book Party, which has a stronger focus on fiction for adults, particularly science fiction and fantasy. It includes novels, as well as many recommended short stories that are available for free online.

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