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How are autistic people meant to negotiate boundaries when they spend the vast majority of their lives having their own boundaries ignored, trampled, or ridiculed?

By Lola Phoenix

Content warning: sexual abuse

Last year, Safe Kids, Thriving Families—a child abuse protection charity—introduced a campaign encouraging parents to not force their children to kiss or hug adults in their lives. The charity posted on Facebook:

“Just to be clear to everyone — WE LOVE HUGS AND KISSES. However, we are VERY MUCH against FORCING kids to kiss and hug. We are a child abuse protection charity who work in our community with victims and families and it is well established in this field that ONE of the ways to protect our children is to change our cultural attitudes towards consent and body autonomy.”

As silly as it may initially sound, I wonder if we could have a similar campaign by adults, for adults. As someone on the autistic spectrum, my life is constantly punctuated by moments where my consent is not prioritized and my personal boundaries are considered too obscure. The irony is that I am the one described as stubborn and unyielding — all while I organize my entire life around meeting the rigid societal norms created by allistic (non-autistic) people. Every day I walk on eggshells to avoid offending others. I make eye contact; I shake hands; I make awkward small talk — all done solely to make allistic people feel better. Meanwhile, my boundaries are considered both too unimportant and too “weird” to be accommodated.

How are autistic people meant to negotiate boundaries and provide consent when they spend the vast majority of their lives having their own boundaries ignored, trampled, or ridiculed?

From an early age, I took things very literally and never enjoyed breaking the rules. The mounting anxiety and the crushing guilt I felt afterwards never seemed to outweigh whatever rewards were promised; I liked doing what I was told. And, especially as a kid on the autistic spectrum, there were some basic rules I understood about life. One of them was that adults were always right and should always be listened to.

I make eye contact; I shake hands; I make awkward small talk —all done solely to make allistic people feel better.

In hindsight, I can’t tell you if being so willing to follow rules made it easier for my babysitter to sexually abuse me, or if being sexually abused — multiple times between the ages of 3 and 9 — made me invest even more in the rules. Maybe I believed that one day the right combination of rules would keep me safe from the sexual aggressors that I, even as a child — as someone society reads as female — held responsibility for defending myself from.

On top of the sexual abuse I experienced, growing up as a disabled child often further underscored that what happened to my body was not something I had control over; doctors and medical professionals had near-complete access to it. And while the intent of my doctors in removing my clothing was very different from those who sexually abused me, the message of both of these experiences congealed: From a very early age, my body just didn’t feel like my own.

Moreover, I was always afraid of the consequences of saying “no,” as there have been myriad situations in my life where saying “no” was simply not safe — or it just never mattered.

What It Means To Be Highly Empathetic, And Autistic

Being blind in one eye, my three half siblings relished doing anything to target my “good” eye, whether it be shining lights into it or throwing things at it. Saying “no” never stopped them; it only seemed to delight and encourage them. I also grew up in the south, where a child saying “no” to a parent is not only unheard of, but could be met with swift punishment. Beyond those cultural norms, though, my family was also textbook abusive. If the wind slammed my door shut accidentally, I used to immediately open it again and apologize profusely. Displays of contradiction were not only unwelcome, but, with the most severe punishment in my childhood home being a belt whipping, extremely unsafe.

In short, whether the retribution was physical, emotional, mental, or all three, there have been many times when “no” was not an option — be it in terms of eye contact, shaking hands, or hugging people. Not doing these things either makes others feel awkward or causes me to stick out, which intensifies my anxiety.

This is the case even in spaces where consent is supposedly “valued” — where people are encouraged to ask before touching. You would think that in such spaces people would be less likely to assume or pressure your consent. But I’ve found that if people are encouraged to ask before touching you, they will then ask way more to hug and touch you, with the presumption you’ll agree due to this wonderful “safe space” exercise — more so than they ever would in a space without these rules.

It’s almost as if the rule of asking before touching is a green signal for people who want to touch. Instead of keeping their distance, people seem to push more for touch, which can make even those spaces unsafe for people in my position. Sure, I can physically say “no” to someone and within those spaces; it’s unlikely they will kick up a fuss. But “no” is more than just a simple word that’s a complete sentence — it’s a sentiment and right I am unused to having and exercising without penalty. It’s a negotiation I don’t always have the energy to have, and don’t need as much in spaces where people are less likely to ask me for hugs.

The reality is — despite self-care-inspired calls to set boundaries — if I were to truly utilize the power of “no” in my life, things would not change positively. I would likely not have very successful relationships at work. I might, as I did in school, be assumed stuck up and rude, and therefore find simple social interchanges more difficult because people would be hostile towards me. Moreover, my anxiety would increase tenfold.

I find understanding what “no” means for me even more difficult as I navigate the murky waters of sexual consent, especially as someone on the asexual spectrum who’s survived sexual abuse. My reasons for wanting to have sex are never as simple as a biological drive or need. Based on what people tell me it is to feel “horny,” I could count the times I have genuinely felt that way on one hand. Most of my desires for physical affection have little to do with the actual, physical reality of those things; it’s much more about what they represent.

My reasons for wanting to have sex are never as simple as a biological drive or need.

Because my brain processes my senses so strongly, physical contact can often come with a lot of anxiety and discomfort. Touching can quickly go from enjoyable to overwhelming, and the prospect of explaining that to a stranger can be daunting. As a childhood sexual abuse survivor and someone who didn’t grow up being touched affectionately — aside from maybe one person — I never really understood the value of touch. As a result, I learned early to do without it. So touch almost always represents something symbolic before I can relax into the physical aspects of it.

This is definitely also the case with kissing. I find the actual physical act bizarre — so much so that I often end up laughing in the middle of making out with someone. It’s the representation of what kissing means that is more enjoyable to me — and the same goes for sex. But there are times when the physical tedium of sexual acts is not something I necessarily look forward to. Included in that tedium can sometimes be consent negotiation.

How do I give enthusiastic consent in such cases? As an asexual person, I appreciate the value sex can add to my relationships — as both a physical act and as a way to bond with someone. But I don’t necessarily feel enthusiastic about it. For me, feeling enthusiastic about sex and being expected to be enthusiastic about it every time is sort of like someone expecting you to be excited every single time you make pancakes. Pancakes are great, aren’t they? (Unless you’re allergic to them for whatever reason.) But you’re not necessarily going to be enthusiastic about making them every single time.

My Inability To Make Eye Contact Does Not Need To Be ‘Fixed’

I feel capable enough with people I know and trust that if I consent to something that I later feel I don’t want to do, I can say “no” without fear. But that trust has to be built with them — and it doesn’t come easy because “no” in my life has never been a complete sentence. And a respected “no” continues to be a power I can never wield in my day-to-day.

Every day I have to negotiate the boundaries of consent with the world as a person on the autistic spectrum, and every day the idea that my “no” is worthless is reinforced. My “no” means nothing next to social conventions that demand I physically act out specific behaviors for the comfort of allistic people — so why would this dynamic not extend to sexual behaviors too? How can I trust that in sexual situations I am not just agreeing to things for the sake of avoiding the awkwardness and tension that comes with vulnerability? Especially when being vulnerable in life has usually come with someone taking advantage of that vulnerability?

Negotiating this every day with myself and the world is tiring. It might be why social situations leave me feeling exhausted, especially with strangers. I can’t let my guard down. I have to continue to perform. On a fundamental level, my desire to be myself is not permitted without an undue amount of stress in my life. I have to sacrifice part of myself for the betterment of the whole in everyday situations. And I am scared that this inner part of me that desires the “peace” of adhering to rules and orders will keep me from saying “no,” even when I should.

Why I Wish I’d Been Diagnosed With Autism As A Child

There are days when I wish sex didn’t exist. Not only as a sexual abuse survivor, but also as an asexual person.

There are days when I wonder if being allistic might mean I could go to more parties and social gatherings, if I might have more friends, if I might feel differently and somehow that might change the frequency of my attraction.

There are days when I wonder if sexuality had been introduced to me in the precocious stumbling method of self-exploration and fun, if a sexual tinge would fill me with desire rather than dread.

Within a discussion of consent there is always a “no” — and even as I’m far away from the storm cloud that shadowed over my world for so long, I am still afraid of the lightning.

On a fundamental level, my desire to be myself is not permitted without an undue amount of stress in my life.

The point of sharing all of this is to encourage a more dynamic understanding of enthusiastic consent. It’s to make people think about what touch and consent mean for disabled people who don’t have the option to consent, or who feel like their boundaries and accommodations are regularly ignored or discounted, who have to sacrifice their bodily autonomy for their own health and survival.

I also want people to think about how living with this dynamic can impact so many other things in people’s lives. When those of us who have felt a backlash to our “nos” say yes to appease others, the ripples of that extend to every area of our lives.