I was excited to see Noah Eidelman’s workshop Neurodivergent & Naughty: Sex and Sexuality for folks on and around “the spectrum” on the schedule at the 38th annual Guelph Sexuality Conference., where I spent a fun, exhilarating, exhausting couple of days in June. Collectively, our conversations about sexuality and disability are still revolving mostly around physical and sensory impairments or illnesses. When we turn to intellectual and developmental disabilities, we’re still too often stuck at the question of ability to consent, or at validation of sexuality (including asexual identity) in the first place.
Noah’s presentation took us beyond that conversation, to the factors that can affect relationships, sexual identity, and sexual expression for neuro-atypical or neuro-diverse folks. Noah likes the shorthand of neuro-weird or neuro-whatever. As someone who would be considered neurotypical (more on that in a minute) I don’t feel comfortable adopting the term neuroweird, but I love it…because it describes just how messy and imprecise the whole neurodiversity umbrella is.
Noah started the presentation with some definitions and language etiquette.
I was pleased that Noah mentioned the problems with referring to someone as high- or low-functioning, something that’s done a lot, especially with autistic or mentally ill folks. This kind of language is a problem because it places value on the ability or inability to do something. Whether someone can tie their own shoes, count to ten, wipe their own butt, or live on their own without help isn’t a moral question. Assigning a functioning level to someone is supposed to tell the story of what supports or technologies they need, but it’s a sloppy shorthand. Much clearer to spell out what a person is or isn’t physically or mentally able to do.
When we talk about neurodiverse folks these days, we usually think about autistic people first, but the neuro-atypical umbrella can include people with ADD or ADHD, people with learning disabilities such as dyslexia or dyscalculia (difficulty learning or understanding number-related stuff), people with mental illnesses such as bipolar disorder or schizoaffective disorder, and other people with neurological disorders, brain injuries, and developmental disabilities.
In short, we’re usually talking about people who have been labelled with some sort of medical diagnosis. Sometimes, this is helpful, when it means that someone gets the support and validation they need for how their brain works. But the diagnostic process also has a really intense history of racism and cultural bias – for example, the history of racial prejudice in intelligence testing.
There’s really no such thing as a normal brain. I’ve looked for definitions of neurotypical, and most of them boil down to “not autistic” – an oversimplification on my part, but not much of one. IN everyday use, “neurotypical” often refers to cognitive functioning, learning ability, and what would be considered stable mental health.
I think that what we usually mean when we say neurotypical is the brain that can manage, or mostly manage, to deal with the world as we’ve set it up, to learn in the one or two ways that are considered acceptable or “normal,” to emotionally cope in the environment, to react to stress and external stimuli (loud noises, flashing lights, crowded subway cars, etc) in culturally acceptable ways.
None of this actually means, for example, that noisy, crowded, fluorescently lit environments are ideal, or good for our physical health, or anywhere close to ideal for helping us understand and remember things, or that the way we’ve set up classrooms and the way we teach information actually supports learning, or that our culturally sanctioned ways of conducting a relationship and communicating about or during sex are actually useful or health-promoting. So-called neurotypical folks just happen to be the majority (and majorities don’t always refer to the largest groups of people).
Here are just a few of the points Noah shared about neurodiverse folks’ experience of and needs around sex and relationships.
- Communication needs and methods: Some folks are nonverbal, partially verbal, or only verbal some of the time or in specific situations. These folks communicate through writing, sign language, or other nonverbal methods. Other people struggle with social aspects of communication, such as how to make small talk.
- Sensory Issues: Some folks are sensitive to being touched, or have strong negative reactions to specific textures, or temperatures, or ways of being touched. I think it’s important for we neurotypical folks to understand that these reactions are often Not just expressions of discomfort, but of deep distress.
- Social skills: Trouble with or fear around meeting people, with knowing how to negotiate different relationships – neighbor, boyfriend, stranger. Some folks may also struggle with what diferent social cues mean, or when and where to act out diferent social behaviours. Noah stressed that not all neurodivergent people will struggle with social skills, and that some folks may have good and bad days with regards to their abilities to understand social cues, depending on their level of anxiety, whether or not they feel overstimulated, or other factors that might affect how their brain functions.
- Self-esteem: A lot of neurodivergent folks have a low sense of self-worth. Here’s how I understood Noah’s explanation for part of why this happens: When you’re always told you’re doing something wrong (not expressing yourself the right way, not being socially appropriate,, “overreacting” to events or stimuli – loud noises, etc – that “should” be “no big deal”) and people are trying to show you the “right” way to do that thing or react in that environment, it can take a toll on a person’s sense of self and make them value self less.
- Gender: Many neurodiverse folks identify as genderqueer;. If you already have a different perspective on the world than the one society dictates we all adopt if we’re going to be “normal” prescribed roles of maleness and femaleness already make less sense. These roles are less likely to feel right for yourself if they don’t make sense to begin with.
Even progressive understandings of sex and sexuality can exclude the experiences and needs of neurodiverse folks.
Our basic understanding of how to do enthusiastic consent doesn’t account for the communication or sensory needs some neurodiverse folks might have during sex. A person’s inability to consent might have nothing to do with whether they do or don’t want the sexual activity to continue. Sometimes folks can be so overwhelmed by the sensory input of sexual activity that their ability to speak, or to find the right words, or even to acknowledge that they’ve been spoken to might be impaired or absent altogether.
If communication is not being understood. If the person doesn’t have words. Or the words that come out aren’t the words expected for that situation, the feeling behind the words may not be understood or respected and this is when misunderstandings, and assault happen;
If their senses are overwhelmed, a person may not be able to say what’s wrong or how to fix it.
If “I don’t like this” comes out as movie dialogue or a word being repeated over and over… it’s unlikely a partner will understand, and know to stop what they’re doing, unless they’ve been told ahead of time that this is a typical response to feeling uncomfortable, anxious, or otherwise needing the sex to stop or change.
What to do when this is someone’s reality.
- Set parameters about what’s going to happen during sex up ahead of time, when that’s the only thing people are thinking about, and there isn’t a whole bunch of sensory input to compete with.
- Agree about wants, desires, and boundaries ahead of time in whatever communication form is strongest for those people on that day.
- agree to what activities will or won’t happen, and agree to what words or signals will be used in the heat of the moment to indicate consent.
- Noah suggested using a a neuro-diversity and sex checklist, like this one.
To help with communication during sex, people can try:
- Asking their partner yes/no questions. For example: asking “Do you like it when I…” instead of “What are you feeling when I do this?”
- Or, ask ranking questions.”How much are you enjoying this, with 1 being not at all and 5 being “Hell,yeah, don’t stop.”
It’s ironic, in a pleasant way, that noah’s presentation gave me new and interesting ways to understand some things I already knew.
I hadn’t, for example, thought about the ways special education and behaviour therapies could impair a person’s awareness of their own body, sexually and otherwise, but it makes so much sense. When you’re told that your perception of the world isn’t accurate, you can, I imagine, start not believing that any of your perceptions or sensations are accurate, or that they’re acceptable.
When you’ve been trained that the way you react to loud noises is socially unacceptable, you can start to lose touch with your instincts.
When you react negatively to being touched, and you receive behavioural therapy to “teach” you how to handle touch, you might start thinking that you’re not allowed to have boundaries around what’s done to you or how you feel about what’s done to you. This could have some pretty negative consequences for a person knowing how to protect themselves from unwanted physical or sexual contact, knowing how to ask for the kind of physical or sexual contact they do want, and for understanding and respecting other people’s physical and sexual boundaries.
Having these kinds of experiences can result in feeling out of touch with your own body, and you can need reinforcement that your body is their own.
Over and over again, I’m struck by how much our disability-inclusive conversations about sexuality are really the conversations everyone needs to be having about sex and sexuality. Like: Of course no one is the same (E.G. your current lover isn’t necessarily going to like the same things your last lover did, so having signature sexual moves isn’t going to do much for anyone except the lover who likes them.) IN other words, there’s no one –size-fits-all, magic bullet sexual technique that you can use and thereby avoid the awkwardness of asking your partner what they want.
Our ideas about what’s supposed to happen when in a relationship? They depend on being from the same culture, and being willing to mess up a lot because one of you thinks that first dates are for kissing only, while the other is sure the cultural rules say “second base” is absolutely acceptable. The idea that there’s a right way to do sex and relationship stuff and that everyone knows that way without having to talk about it is just a messy, harmful myth.
For folks who can’t pass as neurotypical, there are very real struggles, interpersonal misunderstandings, and traumatizing incidents – all of which can seriously impact sexual expression, or even how a person understands their own sexuality. Add this to cultural myths and you often have a mess.
There are so many parallels between the things that neuro-atypical folks find they have to think about, and the things so-called neuro-typical folks need to be thinking about if they’re trying to have healthier sexual relationships.
More About Noah Eidelman
Noah Eidelman is based in Montreal.
From the conference Web site:
Noah Eidelman is an atypical support worker, community organizer, workshop facilitator, childcare provider, and all-around nerd. Noah’s interests include (but are definitely not limited to): confronting systems of power and privilege, challenging assumptions and stereotypes, trauma theory, disability and disability justice, first aid and community healthcare, the awesome stuff learned by hanging out with kids, reading, cartoons, and pigeons.
(A love for community healthcare and pigeons? Rock on!))