Autistics Speaking Day 2017: What I would say to autistic people who want a cure

Chavisory's Notebook

ASDay 2017

Autistics Speaking Day was founded several years ago in response to a particularly ill-conceived charity campaign, as a way of resisting the narrative that we are or should be silent or non-communicative. We’ve utilized it, largely, to talk and write about the truths of our lives and refute common misconceptions to a largely non-autistic audience.

It has been less focused on autistic people speaking to each other. That’s what I’m hoping to do today.

Recently I was asked, in the context of a broader conversation on Twitter about the foundational principles of neurodiversity, what I would say to autistic people who do want a cure or support the development of a cure for autism. This post is adapted from that discussion. I’m not sure it’s what the person who asked me expected, and I’m not sure how many people who fit that description might ever read this, but, well, this…

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Before the birth of my partners’ and my child in early February this year, I had exactly zero experience with taking care of a baby. Because of fear of how fragile babies are combined with a few anxiety disorders, I had never even held a baby.

I was very apprehensive about things that have turned out to be the easiest things about taking care of a baby. And the things I do worry about are things I never expected to worry about.

I was initially afraid to hold the baby, because of an irrational fear of dropping her. I have since held her so often that while I sometimes have intrusive thoughts about it, I am very confident about my ability to hold her.

Early on, I was nervous about diaper changes, since I’d never changed a diaper before she was born. I wasn’t nervous about any particular aspect of diaper changing. I think my nervousness might have been a generalized “you will definitely do it wrong” anxiety. Now that I’ve changed a few hundred diapers, I can say that it’s extremely easy. The only challenging thing is when the baby starts peeing or pooping in the middle of a diaper change, but even then, all you have to do is get out a new diaper and do some extra cleanup. (Fun fact: It’s widely said that babies with penises will pee during diaper changes if you’re not fast enough, and there are a bunch of products you can buy for such an event, but in reality, all babies do this regardless of what genitals they have. If you frequently change a baby’s diapers, it’s inevitable that sometimes you’ll be peed on.)

One thing I wasn’t expecting is that I now occasionally have nightmares about bad things happening to the baby. Other parents we know with a new baby (who also have older children) have informed us that it’s normal to have those kinds of nightmares. I can’t actually recall any particular nightmares of bad things happening to the baby offhand, which I think is good evidence that the fear in them doesn’t stay with me in waking life.

Definitions are tools, not prescriptions

Today, Kiowa of Asexual Advice responded to an anonymous message in which the asker said that they have a consistently low libido that isn’t distressing to them and an acquaintence told them that made them gray-asexual. They asked if it was true that low libido automatically means a person is gray-asexual.

While I agree with Kiowa that low libido doesn’t automatically mean someone is gray-asexual, I disagree very strongly with her statement “Orientations are all described by sexual attraction, not by libido.”

This statement is factually incorrect. Many non-asexual people define their sexual orientation in terms of the kinds of partner-relationships they desire, rather than the sexual attraction they experience. In the entire history of asexual communities, there have always been people who self-describe as asexual for different reasons than their attraction experiences, even if lack of sexual attraction also describes them. Sexual attraction and lack thereof are irrelevant to my orientation. My sexual orientation is asexual for reasons that aren’t lack of sexual attraction.

I would have told this asker: if the word “asexual” helps you understand your sexuality, you are free to describe yourself as asexual. If it’s personally meaningful to you that you have low libido, you can describe that as asexual, with or without the word gray. I think it’s possible Kiowa tried to express this, but her wording comes across as telling the asker “You can describe yourself as gray-asexual if you want. If you feel a different label describes you better, that’s fine too.” Her choice to not question the idea that identifying as asexual without the word gray is not an option for the asker also concerns me, because there is a very widespread practice in asexual communities of shunting people out of asexual identity and into gray-asexual or demi identity without their consent.

Kiowa, you have a choice. You can choose to emphasize “Asexuality is about lack of attraction, not anything else,” which results in alienating asexuals like me, and potentially alienating people unfamiliar with asexual communities’ conceptualization of sexual attraction.

Emphasizing that singular definition can be immensely confusing to people who are just encountering asexual communities for the first time. Libido and sex aversion are vastly more concrete experiences than sexual attraction, and many asexual people’s response to the question “do you experience sexual attraction” is “honestly, I have no idea.” Those people should be affirmed in their chosen label, including if it is “asexual,” with or without the word “gray.”

Kiowa, you could choose to say this instead: “the most common definition is lack of sexual attraction, but some asexuals define it as [other definition] or [another definition], but the most important determining factor is whether the word asexual helps you understand your sexual orientation in a meaningful way.” And if you did that, people would feel a lot more empowered than if you continued choosing to respond to “am I asexual” questions with “I think [particular label] might fit you” or “You can use [label] if you want, but you don’t have to.”

Definitions are only tools. They are about describing concepts, not restricting them. They don’t declare the boundaries of what it means to be asexual.

It Doesn’t Matter If You Turned Out Fine

We Got So Far To Go

One of the recurring discussions that pops up on my social media feeds and blog rolls is one that people have strong opinions about: hitting or spanking kids to punish them. One of the most common exchanges/memes I see in regards to spanking goes like this:

“I got hit and I turned out fine.”

“Do you think it’s ok to hit kids? Then you’re not fine.”

I have problems with both elements of this exchange. While I agree that thinking it’s ok to hit children means you probably aren’t a paragon of ethics, I don’t think the response really gets to the heart of the matter, which is this: hitting someone is a Bad Thing. It hurts them. You do not need to show any additional harm beyond the actual hitting. You don’t need to show that it causes psychological damage later in life. Hitting another person all on its…

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Partnership, Desire, Desirability, and the Sex-as-Worth Principle

This is vitally important for anyone giving asexual advice to understand. Coyote put it into words beautifully.

The Ace Theist

CN: relationship problems, body-image issues, social pressure, sex as a site of conflict, and related issues (ex. sexual abuse comes up for about a paragraph).  All the sex talk here will be non-graphic, but this post is about interpersonal conflict between partners where one doesn’t want a sexual relationship and the other one does, so brace yourselves for that if you keep reading.  Whenever I see this discussion happen, people seem very eager to consider that the partner who wants a sexual relationship might be well-meaning and non-abusive and genuinely hurt by their partner’s disinterest, so for sake of argument, that’s the narrow hypothetical I’m going to be focusing on for now…

…because even if we want to focus on their side of the story, the reassurance I see always seems to fall short of what I suspect is at the heart of the issue.

If you agree that sex…

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Asexual identity prescriptivism linkspam

This is a collection of links that each contribute important points on the subject of prescriptivism in asexual communities. This list is meant to be illustrative, rather than exhaustive, of reasons to abandon the enforcement of “lack of sexual attraction” as the most important definition of asexuality, to embrace a utility model of asexual identity, and to reject the enforcement of asexual definitions altogether.

James writes about why enforcing “lack of sexual attraction” as the only definition of asexual is detrimental to asexual community-building and leads to continually policing the boundaries of who “counts” as asexual. (Contains NSFW discussion of sexual activity.)

swankivy, in a conversation about the harm in emphasis on “asexuality is not sex repulsion” in vis-ed, describes other useful definitions for “asexual” in addition to the sexual-attraction definition.

Tecmag writes that having multiple definitions of asexuality is not a problem unless a person imposes a definition on others, or otherwise uses a definition as a litmus test to determine if someone else is asexual.

Siggy writes that the lack of sexual attraction definition, and the insistence on it being so specific, fails in encompassing many people who could benefit from being part of asexual communities.

Queenie writes in this comment on Coyote’s post about pitfalls in asexual vis-ed that have bad consequences for sex-averse aces, about the push to restrict definition of asexual to “lack of sexual attraction” exclusively, which has the result of asexuals who use other definitions for themselves (such as “lack of sexual desire”) not being taken seriously by the broader asexual community.

In response to an anonymous person asking “What’s the actual definition of asexuality,” Queenie describes several definitions–lack of sexual attraction, lack of sexual desire, and definitions used by non-Anglophone communities–and emphasizes that any of those paths to an asexual identity are valid, and that there is no one, singular, “actual” definition that supercedes all the others.

epochryphal lists several reasons a person who does not fit the “lack of sexual attraction” definition might choose to describe their sexual orientation as asexual. Co further writes that the community should not shunt asexual people of those definitions into gray or demi identity, because identity labels are about describing yourself in ways that make sense to you alone, not about cramming yourself in a box.

Siggy writes about how people with similar experiences will sometimes use different words, and why it is important for this to be affirmed in the asexual community.

Things That Make You Acey writes about the long and violent history of White people stripping people of color of agency over their identities. Saying variations of “even if you don’t use the word, you’re still asexual” to anyone reinforces this oppressive dynamic. The move to streamline asexual identity is a symptom of problems in society that are much bigger than asexual identity politics. Dismantling identity label prescriptivism requires dismantling of broader oppressive forces in society.

Examples of Bad Ace Advice


This is a submission to the February 2015 Carnival of Aces, whose topic is Cross-Community Connections.

Asexual activism that emphasizes asexuality as not-illness or as not-caused-by-illness-or-trauma has never sit well with me. Although my own experiences with mental illness and disability are part of the reason why, it actually goes deeper than that.

In asexual spaces where I don’t know anyone else, I am quiet about being autistic and mentally ill. I stay quiet about these aspects of myself in any space because such disclosure, anywhere, often involves at least one person who will not take this disclosure at face value. At least one person who expects me to explain every detail of my autistic traits in order to prove I’m really autistic, or who expects me to explain how I can be mentally ill if I’m in public around other people and apparently enjoying myself. The only asexual spaces where I have not been afraid of that happening are asexual spaces that consist mostly or entirely of aces with developmental disabilities.

It is very common for disabled aces to wonder to ourselves, “Did my disability cause my asexuality?” and to doubt the validity of our asexual identity if there is even a shadow of a possibility that our identities were influenced by disability. There is an underlying assumption in “Asexuality is not caused by illness or trauma” that coming to an asexual identity due to trauma or aspects of a disability is invalid. Further than that, focusing on the “Asexuality is not caused by illness or trauma” reflects a misunderstanding of the possible experiences of trauma and of disabilities.

Being autistic has influenced every aspect of my life, including my asexual identity. Recognizing my touch-hypersensitivity in myself was the first way in which I realized that something was different about me, and it was from the touch-hypersensitivity that I extrapolated that I would not enjoy partnered sexual activity. That extrapolation led me to figure out that I was not actually interested in sex. My earliest usage of the word asexual in reference to myself was in reference to my lack of interest in sex. I doubt that touch-hypersensitivity commonly leads to asexual identity, but I see my touch-hypersensitivity–and therefore, my being autistic–as integral to the discovery of my asexual identity.

Emphasizing “Asexuality is not caused by disability” strips the agency of people with disabilities to express that their disability is actually intimately connected to their asexual identity. Emphasis on “Asexuality is not a reaction to trauma” denies the agency of sexual abuse survivors to say that trauma played a role in their identity development. I am tired of encountering pushback from fellow asexuals when I affirm the agency of trauma survivors and people with disabilities to declare that trauma or disability has influenced their asexual identity.

If your asexual activism does not affirm the agency of people to say that trauma, mental illness or disability influenced their asexuality, your asexual activism is severely failing the people you believe you’re affirming.

How to Not to Do 101 on Asexuality, Sex-Repulsion, and Sexual Activity

This is a very good set of guidelines for doing asexual vis-ed work.

The Ace Theist

Are you an ace activist, educator, or content-creator?  Are you in the process of making (or have you already made) asexuality visibility and education materials?  If so, you’re this post’s target audience.  Keep reading for a brief overview of common mistakes to avoid in ace vis/ed with regard to the topics of sex and sex-repulsion, with explanations and links to further information on what to keep in mind as you create or edit your project.

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Words are difficult.

For the past several months, I’ve been experiencing some kind of burnout with respect to asexuality-related activism. Writing has always been hard for me, but it’s become much more difficult for me in the past several months. I’ve felt very guilty about being unable to contribute to the asexual blogosphere, and I hope that this post will offer a partial explanation.

While I’ve had a lifelong difficulty with translating my thoughts into written or spoken words, it wasn’t until a few days that I was able to express details of this difficulty in words.

My thoughts are partly in words, partly in images/impressions/emotions and partly in concepts. I’m not sure how much of my thinking falls into each category–I just know that I have thoughts in each category. A thing that frequently happens in my translation of thoughts to words, and in the translation of words-I-understand to words-others-understand, is error. Often, it will happen that I’ll use words that don’t convey what I want to express, and I’ll know I’m using the wrong words, but I still can’t figure out the correct words. Several other autistic people online have informed me that they relate to this experience.

Up until I was able to describe this process a few days ago, I had thought of it as a moral failing in myself to be knowingly using the wrong words like that. Now that I know it’s part of my being autistic, I’m working on letting go of the very deeply entrenched feelings that making these communication errors constitutes lying or deliberate deception.

This difficulty in putting my thoughts into words for writing is why writing takes a very long time for me. (With speech, I often settle for the erroneous words or say “I don’t know.”) Due to autism, organizing my thoughts into writing involves many extra steps, even if it’s just writing in my private journal.

For now, my contribution to asexual discourse will be in the form of reading other asexual blogs to stay as current as I can. I am also going to focus on self-care more, so that I won’t get to a point of needing to totally abandon asexual discourse.

Robot Hugs

Enjoy the cold, emotionless embrace of Robot Hugs.

Talia C. Johnson

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