Autism, Sex, and Gender

Over the last couple of days, I watched all of the available recordings from a conference titled “Intimate Lives? Autism, Sex/uality, Gender and Identity.” It was organized by four doctoral students–Marianthi Kourti, David Jackson-Perry, Kirsty Allenby, and Daniel Bendelman–and funded by the British Sociological Association. It took place on May 18 at the University of Birmingham in the UK. Overall I thought the presentations were excellent, and while I’m not going to write up a play-by-play of each one, I wanted to share some of the content that particularly resonated with me.

Preliminary note: I have tried to use the proper preferred pronouns for each speaker, but if I have gotten any of them wrong, I sincerely apologize. Please let me know so I can update the post. In addition, if I have mischaracterized anyone’s statements or opinions, please let me know as well. I have done my best to accurate represent what was said, but misunderstandings happen, and I don’t want to attribute anything to anyone that they didn’t mean.

In “Walking through Treacle: The lived experiences of autistic students in FE and HE,” Deborah Philip talked about research she has been doing into the experiences of autistic students. This wasn’t specifically focused on gender and sexuality, but it was very interesting to hear how her research has changed directions because of her interactions with autistic people. She had initially been interviewing autistic people, parents, teachers, and other professionals, but then she noticed that the autistic students themselves were telling her quite different stories than their parents and teachers were. So she changed her plans and began using only input from autistic people themselves, and focusing on the issues that came up as being important to them.

Deborah brought up the idea of “learned helplessness” to suggest a reason why the students often pretended to agree with what their parents were saying, but then told her otherwise afterwards. (Learned helplessness is a psychological phenomenon that occurs when an individual is repeatedly subjected to painful conditions that they cannot escape. Later, when escape is possible, it is still not attempted because the individual has previously learned that they are helpless, so they don’t even try.) I thought this was a particularly poignant way of describing the experiences of people who are constantly talked over, their own experiences and viewpoints subordinated to other people’s.

One more thing I want to say about this presentation was what Deborah said about person-first language. (If you regularly read this blog, you’ll already know that I’m not a fan.) She said that while professionals tend to insist on person-first language, the autistic people she worked with preferred identity-first language. At one point she also invoked the phrase “living with autism” by saying, “I guess a society that wants to ‘live with’ something, would like to live without it.” I thought that was very powerful as well.

In the second panel, Lexi Orchard presented “Winning at Sexuality: A personal reflection of passing in a hypersexualised world.” They started with an overview of some of the ways in which autistic people attempt to pass as non-autistic, including suppressing our natural behavior, impersonating more typical behavior, and scripting. They also had their own term for another technique, which I found incredibly relatable: they called it “precog.” This involves attempting to foresee all of the possible directions a social encounter might go, following all of the potential branches and preparing scripted routines for each of them. This was so familiar to me, and I love the term “precog” (short for precognition, I presume) to describe it. I actually think this strategy really needs to be talked about more, because it is one of the things that makes social interaction so draining and exhausting for me.

Lexi also talked about how masking, scripting, and other techniques are done out of self-defense. They are survival skills that (hopefully) allow us to avoid painful encounters and also get access to social resources. But there are heavy consequences to passing, too: it takes a physical toll, and eventually makes it hard to even know yourself or your own preferences. At one point, Lexi said, “If somebody says, ‘What do you want?’, my brain suddenly goes into this passing mode where I attempt to figure out what you want me to want.” This, too, was painfully familiar.

As part of panel three, Jake Pyne presented “Narrating Autistic and Transgender: Implications for the Gender Clinic.” He talked about the ways in which autism and transgender identity are assumed to be non-overlapping, and the many barriers autistic people face if they want to transition. Jake also brought up the entwined history of applied behavior analysis (ABA) and so-called conversion therapy, which is aimed at gay, bi, and transgender people to “fix” them; Ole Ivar Lovaas and George Rekers worked together as they created these parallel behavior conditioning programs—one to eradicate autistic behavior, and one to eradicate gender-nonconformity. But while conversion therapy is starting to be banned in more and more areas, ABA is still considered best practice for autistic kids.

Olivia Astrid Pountney also talked about the barriers to transitioning that many autistic people face, in “Transitioning in a neurotypical world: A critical autistic analysis on gender identity services.” She talked about the typical narrative expected by gender clinics, and how it doesn’t always fit the trans autistic experience. For example, she talked about the ways in which people are expected to perform stereotypical gender roles in order to be accepted as being “really” their gender, but for autistic people those social norms are often nonsensical. They can also clash with sensory needs, which leads to the dilemma, for her, of choosing between wearing sensory-friendly clothing that isn’t stylish, or wearing more stylish clothing that conforms to gender expectations in order to be accepted as a woman (while being uncomfortable). She pointed out that there is no universal experience of being trans, autistic, or both, and emphasized the need to depathologize both trans and neurodivergent identities.

In “Spanking my sensory needs? An understanding of myself as a human, a sexual being and an Autistic,” Jennifer Layton talked about the ways in which BDSM practices allowed her to inadvertently meet her sensory needs before she learned she was autistic. After a late diagnosis, she was given various recommendations for her sensory diet, and she came to realize that they were things she had always enjoyed through BDSM. For example, she was given the recommendation to wear tight clothing and/or wear a weighted backpack for a feeling of pressure…which is precisely the experience of being tightly bound in rope and/or rubber. Similarly, a recommendation that she swing back and forth was mirrored by her enjoyment of suspension play. Because kink is so misunderstood and pathologized, she had felt ashamed of her enjoyment of it, but she is starting to overcome that, in part through this recognition that it has allowed her to meet her autistic sensory needs before she consciously knew she had them.

The last presentation I’ll talk about is Sonny Hallett’s “To Hug or not to Hug: physical affection at the intersection of autism, culture and gender.” There were several fascinating aspects to their talk, including the experience they shared of growing up partly in the UK and partly in China with their grandparents. The two cultures have very different expectations about physical contact (and eye contact), especially between strangers, and Sonny found their autistic traits more normalized in China. They found the social environment harder to navigate when they returned to the UK, including knowing when physical contact would be welcome.

The main dilemma that Sonny conveyed was that, while they felt starved for physical affection, it was also often uncomfortable, and they didn’t know how to seek it out when they wanted it. On top of that, they mentioned how Westerners tend to sexualize everything, starting at an early age. Casual touching, or giving someone a hug, is quickly seen as a sexual overture, so knowing how people will interpret things becomes important. For an autistic person who has trouble reading social cues, this becomes even more difficult, and Sonny said they eventually ended up taking a passive approach to physical affection. But simply allowing physical contact whenever it comes your way can quickly become dangerous, because you don’t learn how to set boundaries. They described what they called “anxiety confusion thought-cycle paralysis,” which is when you’re trying to read a situation that is getting uncomfortable, going around in circles about what’s going on, and then ending up deciding that you’re overthinking it and not saying anything. This, too, felt very familiar to me.

All in all, this was a great conference, and I don’t want to give the impression that the sessions I didn’t write about weren’t interesting—all of them were, and together they offered a wide variety of research, observations, and personal experiences that centered autistic experiences of gender and sexuality in a way that was very encouraging. I hope to see more events do the same.

Meeting People

Last Wednesday, I participated in a panel discussion at my community college for autistic students. Well, it was a panel of autistic students, but I suppose it was mostly held for the edification of faculty, staff, and other students. The questions related to our experiences in school on various levels: the physical and sensory environment, the social environment, academic expectations, etc. There were five of us on the panel, and our answers (and our communication styles) reflected a lot of the diversity of “the spectrum,” though of course not all of it.

One of my professors was in attendance, and we had a great discussion about the panel in one of my classes the next day. When he asked me what I had thought about the panel, I answered truthfully that the biggest thing I had gotten out of it was the chance to meet the other panelists! I really enjoy meeting other autistic people. We’re not all going to hit it off, of course, but there is usually a nice familiarity—at least on some level—that I’m not used to feeling with those of the predominant neurotype. And from talking to the other people on the panel, I clearly wasn’t alone in that.

In fact, except for one person who had to leave for a class right away, we all stayed an extra twenty minutes after the panel was done, in order to chat and get to know each other better. And we started talking about setting up some kind of regular get-together, like a casual drop-in lunch, that would allow us to stay in touch. I really hope we’re able to carry through with that, given that this semester is almost over.

Then the next day, on Thursday evening, I went to a social/support group for trans and non-binary people for the first time. And it was so cool to, again, find a sense of familiarity in other people’s experiences that I don’t usually get. Even when our paths had been very different, and our actual gender identities varied, the fact that each of those identities was accepted, and we could all talk openly about our feelings and experiences without the usual gendered assumptions was really freeing. I’m looking forward to going back again.

Both of those experiences last week—especially coming on back-to-back days as they did—highlighted what a difference it makes (for me, anyway) to meet people who experience the world (and/or themselves) in ways similar to my own experience, which is usually quite different from that of mainstream society. We’re not all going to agree on everything, but it’s just nice to know I’m not alone. And for the most part, I have found myself in very good company.

Queerly Salient

It was International Women’s Day that did it. All the articles, memes, Facebook posts, etc., talking about women’s strengths and achievements were valid enough, but the more of them I saw, the more I realized that they didn’t refer to me. I do not feel like a woman.

I’ve written about this before, especially in two posts about a year apart: A Long, Weird Ramble About Autism and Gender, and Non-Binary. I had included some musings about it on my About page, but I’ve removed that text for now, because my understanding of my gender has been evolving. For example, it’s not really as “fluid” as I initially thought it might be when I started really assessing it; I actually have a fairly stable sense of gender—and I don’t feel I have no gender at all—but it’s just not one of the usual ones. So I’m feeling like “genderfluid” isn’t the right term for me after all.

Genderqueer, as a word, really resonated with me when I first heard it, and so I find myself going back to it now. It’s non-specific in the sense that it doesn’t try to specify where exactly on the gender continuum I fall, but it’s also (to me) more evocative of a certain way of being than “non-binary,” which I feel is a more general descriptive term that covers a lot of different genders.

So I’ve been thinking about the ways in which I am “not quite this or that” when it comes to gender, and how often that feeling comes up. In my social psychology class, we discussed how people tend to be most aware of the aspect(s) of their identities that are different from those around them; a man in a room full of women, as one example goes, will likely be more aware of being a man than if he were in a room with other men. In this example, gender becomes more or less salient depending on the context.

But what I have been realizing is that gender is always salient for me. It may not be evident to those who feel aligned with the gender that other people attribute to them, but a great deal of human discourse contains an endless barrage of gendering phrases, whether in reference to individuals or when making observations about society as a whole. Even being in a group of all (presumed) women, someone will make note of that fact that “We’re all ladies here.” Meanwhile, I’m cringing.

And it’s not just about words, of course. Thinking I’m a cis woman, men treat me as different even when I feel the same, and women treat me as the same even when I feel different. Up until now, I haven’t really been able to explain why they’re both wrong, and it’s still difficult to do when I’m still working out how I feel and how to convey that to other people. Writing about it here has been really helpful, as has reading other people’s experiences of being non-binary. So, thank you to everyone who has been part of that, and thanks for reading!

Non-Binary

Yeah, I’m thinking about gender and sexuality again. I feel like, at least in the everyday language of mainstream society, people just have to make a binary out of everything. Male or female, gay or straight, cis or trans.

It’s that last one that struck me during the past week. Even when people try to get past the gender binary by acknowledging the existence of trans people, they still tend to default to a binary: if you aren’t cis, you’re trans. But what happens if you’re neither? That’s where I am — my gender identity is neither the same nor the opposite (and doesn’t that concept itself reflect the binary all on its own?) of the sex I was assigned at birth due to my biology. It’s…overlapping.

And then, if I’m neither cis nor trans (or possibly both-and), does that make me straight or gay? I’ve always felt I was theoretically bisexual; I’ve never been in a romantic or sexual relationship with a woman, but I’ve always felt it was possible. (The bigger hurdle is starting a relationship with a new person of whatever gender, so I haven’t been in too many to begin with.) But even though I’ve only been with men, they’re not the “opposite” gender from me, because my gender doesn’t have an “opposite.” So what’s the word for that?

I realize that within the LGBTQ community, people bring a lot more nuance (and a lot more specialized vocabulary) to the conversation, but it seems hard to bring that nuance, that non-binary thinking, into the mainstream. And yet I don’t know how to approach queer spaces, either. I feel like there probably is a place for me there, but I also worry about stepping on other people’s toes, or maybe taking on a label that I don’t deserve to have. I actually do like the word “queer,” as well as “genderqueer,” because they strike me as descriptive but vague enough that maybe binaries can be avoided.

I am actually planning on going to part of a conference next weekend, the Five College Queer Gender and Sexuality Conference in Amherst, MA. So I’ll probably be writing more on this topic in the near future, as I reflect on how that goes. Should be interesting!

Letting Go Of Fitting In

I was very honored to present this essay yesterday as one of six personal accounts selected to be read at the AANE Spring 2017 Conference, which was titled Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles.

I have never fit in.

I’m not entirely sure I fit in here, at a conference about women on the autism spectrum. I’ve never fully identified as a woman, and I found out only a year and a half ago that I’m on the autism spectrum. So trying to tell my story as an autistic woman almost feels revisionist, even when I’m telling the absolute truth.

I grew up not knowing why I didn’t fit in. I was just too weird, my viewpoint and sense of humor incomprehensible. Academically, I was “too smart”; socially, I was mocked for my naiveté, teased for my way of speaking, bullied for my shyness. I was seen as a girl, but I didn’t think like the other girls. As a teenager, martial arts classes gave me confidence, but I still felt out of place. In the classroom, I could hear every fidgeting student, every scrape of chairs on linoleum, the high-pitched whine of every piece of old equipment — but I was able to get past all that if I kept my head down and studied. I loved to learn, and I did well, graduating at the top of my class.

My love of science carried me to MIT to study physics, paid for by an Air Force ROTC scholarship. For a few short weeks I felt I belonged; here was a place where science was cool, people worked hard, and geeky jokes were appreciated. But it was hard, and it wasn’t long before I felt overwhelmed and alienated again. It wasn’t just the academics that were hard; it was also the social stress of living surrounded by other people, the extensive planning and prepping to keep executive functioning on track, the frequent sensory overload. Somehow I made it through, but I graduated feeling wrung out, bitter, and undeserving of my degree.

Thanks to the Air Force, I had a job for at least the next four years. I got to do some technical work and learn new skills — and at least in the military, expectations are usually made explicit, social interactions are fairly regimented, and you always know what you’re expected to wear. Not being traditionally “feminine” is not unusual for a woman in the military, either. There is a lot of uncertainty, however, in knowing you have so little control over your own career, or even your own life: even in those (relatively) peaceful years, I could not say where I would be stationed next.

So I opted to leave when the four years were up. I moved back to the Boston area, got a job at a tech company, got married and bought a house. It was a lot of change over a short period of time, but I was making my own choices. I had friends. I earned my black belt and began teaching at and even helping to run the martial arts studio I attended. It was a busy four years leading up to my thirtieth birthday, during which — first slowly, then more rapidly — I began to hit a wall.

Some people call it autistic burnout: the point at which all the energy and effort you’ve put into keeping it together, managing executive functioning and sensory overload…just runs out. I couldn’t do it anymore. Full-time work, martial arts training and teaching, keeping the house clean, making time for my husband — I just couldn’t do it.

Perhaps unsurprisingly, my first marriage fell apart around this time. My lack of specific gender had always been with me; among other things, it led to close friendships with men as well as women, and to the certain knowledge that I did not want children. These were things my husband knew about me from the start, but they ended up as deal breakers anyway. Looking back, I’m sure my burnout played a role, too, as well as my persistent inability to explain how I was feeling, or to understand his arguments when I found them irrational.

All this time, I still didn’t know I was autistic. I just thought I was a failure, despite all I had accomplished. I held onto my tech job for another year or two, dropping down to part time and hating it more and more. During this time, however, I also grew close to a friend from the martial arts studio, and eventually we decided to move to a rural area and start over on our own terms.

That was twelve years ago. He and I are married now, and live in a beautiful house in the woods. We have struggled for money at times, but did so because we prioritized creativity and happiness over working long hours for other people. When I learned, at the age of 43, that I am autistic, I was overjoyed. Suddenly everything made sense. I started to see my life as a series of triumphs over struggle, rather than a lifelong failure to be “normal.”

I now work part-time — from home! — for a software testing company that seeks to employ people on the spectrum. This leaves time for several creative pursuits and areas of independent study. I still struggle with anxiety and depression, but as I learn to be my authentic, autistic self, I find new ways to manage that. While I didn’t know it for most of my life, autism has helped make me who I am. I wouldn’t want to be anyone else.

 

A Long, Weird Ramble About Autism and Gender

A lot has been written lately about autism presenting differently in males and females, and how this leads to more boys being identified earlier, while girls often go unnoticed until they are women. Some of this writing has been very helpful, and it has led to a number of us recognizing ourselves and seeking confirmation, instead of getting caught up in stereotypes based on one slice of the population.

But I also sometimes find it odd to read about autism in terms of gender. It gets me thinking of those other articles I’ve read that say Autistics are 7 times more likely to be gender non-conforming in some way. So I think there are probably a lot of us who cross those lines between a “male” and a “female” presentation of autism.

I also think there are two ways of looking at this issue. First is the idea that gender-based stereotypes of “autistic” behavior have guided the diagnostic process — clinicians are looking for traits identified in young white males of a certain socio-economic status, so they miss other traits that don’t fit what they’re looking for. This is the narrative in a number of articles I’ve read; they discuss the ways in which women and girls go unnoticed because of gender-based assumptions of what autism looks like in boys.

I think this definitely happens. But the other way of looking at it is that society’s gender-based assumptions also shape how autism manifests in boys and girls growing up.

A personal tangent for context: I’ve never felt particularly female. I didn’t feel like I was supposed to be male, either. Sometimes I’ve felt like both, sometimes I’ve felt like neither. But I’ve always found it jarring when I realized someone was seeing me as female, and only female, and responding to me differently than if I were “just a person.”

Because that’s how it made me feel, sometimes; I was just being a person, and suddenly someone else was calling me a “girl.” I encountered this time and time again, especially when I was in predominantly male environments, such as martial arts classes, the physics department in college, and when I served in the US Air Force. I would be going along, doing my thing, when I’d realize I wasn’t just part of the group like everyone else: I was “the girl.”

On the flip side, I’ve never felt entirely comfortable in all-female spaces that were specifically set up as all-female spaces. (If a group just happens to consist of all women, that feels fine to me.) I don’t have a problem with women-only spaces existing, and I understand why some women prefer them — I just never feel at home in them. I don’t feel a strong connection with the idea of being female, so if a space is set up with the idea that there is a bond between us because of our femaleness, I’m not going to feel like I fit in.

(I am curious about the experience of being in an all-female, all-autistic environment, though. There’s a women’s support group in my area that I have yet to be able to attend, but I plan to check it out sometime.)

But whether or not I feel female, society sees me as female. I was seen as a girl growing up, and socialized as a girl; that socialization shaped my outward behavior, and thus changed the presentation of my autism.

While a quiet, painfully shy boy may raise questions, quiet, shy girls are desirable. They’re cute. And not only does society see this as normal, it shapes girls to be quiet and accommodating. People talk about the “masks” that Autistic women have learned to wear, and how that mask lets us “slip under the radar” undetected until (perhaps) later in life when the mask starts to break down. But we need to talk as well about the societal pressures that shaped that mask — the pressure to conform, to be social, to be “nice.”

Some of us never cared about that, I know. But a lot of us, tired of being ostracized, did our best to learn “the rules.” And “the rules” are highly gendered.

(That means there are also strong societal pressures on boys and men, especially around a certain presentation of “masculinity.” I haven’t experienced those pressures, though, so I’m not really talking about them here — but I do know that they exist.)

So if social pressure wanted me to be quiet and accommodating, what happened when I needed something — quiet time, dimmer lights, different food — to help me cope? I kept it to myself and pushed on. Speaking up for what I needed was discouraged, was seen as intrusive or presumptuous,  so I didn’t. And what happened when I got overloaded enough for a meltdown? That meltdown turned inward. I didn’t explode and lash out, I buried it in silent rage that eventually turned into depression.

Interestingly, a lot of my life was actually shaped by resistance to those gender rules and expectations, too; when society insisted that girls were not good at math and science, and I was, I took that as a point of pride and pursued those fields harder. When I was the only girl in my high school computer science class (this was the 80’s, kids, and it was very new) or the only girl in AP Physics, it pushed me harder to represent “my” gender well, even though I didn’t always feel like a full member of it. This was not necessarily a good thing, as I learned in college when I realized physics was not at all the career I wanted — but it represents another way in which I was shaped by gendered expectations in my childhood.

So what would you have seen when you looked at me then? A quiet girl, excelling in school and rarely asking for anything. Inside I was only half a girl, not knowing what to ask for, confused by everything and constantly misunderstood. Was I “masking” my autism, or just responding to every signal I could pick up and interpret?

The funny thing is, I actually just remembered an incident in which an early elementary school teacher (maybe 2nd grade) told my parents that she thought I was too quiet. My parents scoffed. I was in a class filled with some of the most rowdy, rambunctious kids that my school had ever seen (seriously, they changed class trip schedules because my grade would be too much of a handful) and they thought I was a problem because I was quiet? I agreed with them at the time; I wasn’t a problem, I was one of the “good” kids.

But now I wonder what that teacher saw.