24 Autism, Sensory Experiences, and Family Culture

Mallory Cruz

Once my sensory issues were considered, things just went better for me.

1. Sensory Issues

When I was a kid, my mother loved to dress me, but I hated everything she put me in. It’s not that I hated the designs themselves. To this day, I acknowledge that my mom’s fashion sense has always been great, while mine is absolute garbage. It was because everything she dressed me in did not touch me right. Clothes that constantly touched my skin were bothersome. I still remember the short shorts she dressed me in, in sixth grade. I didn’t care that my skin was showing, but the hem of the shorts was constricting on my thighs, constantly irritating me. I only wore them once.

Eventually, she let me choose the outfits I wanted, which ended up being “boys’” cargo shorts and pants, and “boys’” shirts that were baggy on me. I was finally comfortable, and I was much happier. I wasn’t concerned with style; I just wanted to get through my school day without constantly pulling on my clothes. This fixed that.

I played contact sports all my life and injured many opponents. I love exaggeratedly gory horror movies. I don’t take any pain meds when I get my period. Suffice to say, I consider myself a tough person.

But if I smell any eggs at all, no matter how they’re cooked, I’ll quite literally be incapacitated. The smell is quite figuratively my kryptonite. I’m not exaggerating when I say the smell makes me sick to my stomach. There are foods I just can’t eat because my throat refuses to allow them down (tomatoes are too slimy). This includes foods I like (flan). It took a while for my parents to realize that I wasn’t just being a picky eater (for example, I wouldn’t eat if different foods touched each other), but that I was incapable of eating certain foods.

My parents started warning me when they were making eggs, and they’d make other vegetables for me when they used tomatoes.

Once My sensory issues were considered, things just became better for me.

Before writing this piece, I had called my mom to ask her about when I began to speak during childhood. She had told me before that I had started speaking at around one-and-a-half to two years old, which is considered developmentally delayed, and I wanted to confirm that. But it turns out I had misheard her.

As a baby, I was making eye contact and babbling and was overall very visibly connected to people until I was two years old, and then suddenly I started speaking less and making far less eye contact. What could have happened?

When I was born, I had hip dysplasia, which means my legs didn’t grow into my hips. To set them in place, I wore a hip brace for the first two years of my life. At two years old, it was deemed okay to remove the hip braces. That’s about the time when I stopped talking as much and making eye contact.

As my mom was telling me this over the phone, she remarked, “Oh, actually, now that I say that out loud, I bet it was taking away the hip braces that caused that, like it was a constant source of sensory input—it probably kept you grounded—and that was gone then.”

It might be jarring to hear (read) me say (write) the following, but such a change wasn’t a bad thing. For one thing, I personally find that story hilarious: my parents took something away that was affixed to my lower body to correct my legs and hips, and it led me to stop talking and making eye contact. And, of course, no one would make that connection, which is why it took nearly thirty years to solve that mystery—though I choose to believe I was punishing everyone for taking away my hip braces. I can hold a petty grudge for a long time.

More importantly, it led to me being diagnosed with a developmental delay, which helped me get the resources I needed. But also, there was nothing wrong with me when I started doing that either. It sounds like while my parents weren’t prepared, they were able to adapt to that situation. But the solution, had they figured it out, would have been a very simple one: find something similar to give me that input again.

Overall, I include this story not for you all to go buy hip braces for your kids, but to really see how much sensory input, or lack of good sensory input, can really affect how we’re behaving and feeling. Removing a constant source of sensory input changed my behavior drastically.

2. Diagnostic Criteria

The diagnostic criteria for autism is based on little white boys. Because it’s based on a specific race and gender, it isn’t easily put into context of other cultures; we don’t see how it looks in non-white kids. Therefore, it’s hard to get girls and children of color diagnosed. A white boy and a Black girl, both autistic or neurotypical, will be two totally different people, as they’ll be socialized and raised differently, yet we only focus on one manifestation of autism.

Of course, this kind of medical bias isn’t new: for example, most well-known heart attack symptoms are based on what a heart attack looks like in a cis man even though the symptoms are different in cis women. And some medical students literally believe that Black people physiologically feel less pain than white people because their skin is tougher (for real, look it up).

These biases cause us to fail children of color who need support that a diagnosis can come with.

For example, I’m Puerto Rican. I can’t dance. To my family, it may have looked like I just didn’t like dancing. Truth is, clumsiness in autistic people is common, and I was always clumsy as a kid. I couldn’t dance because I couldn’t control my body, and it didn’t help I had Erb’s palsy in my right arm, which affected my balance. Or that at family parties, I loved merengue and salsa music, but I hated music playing loudly because I had misophonia and it hurt my ears.

I feel empathy for others so strongly, but I’m not always great at knowing how to help. My autistic Dominican nephew shows empathy similarly. And while it’s okay to not be empathetic, the idea that all autistics can’t empathize is widespread.

It doesn’t help that the media continues to push one representation of what an autistic person is: straight white boys who are unempathetic, have no sense of humor, and are bad at social cues. And it’s frustrating to constantly see media portray autism the same way. I’d love to see an autistic character who isn’t white, straight, and a boy.

Most of the criteria feels arbitrary, too. My niece can’t get diagnosed because, though the signs are clearly there, her school grades are great. And that’s it! Good grades are keeping her from getting diagnosed.

And some beliefs are massively misinformed. Don’t even get me started on the belief that autistic people aren’t funny. Some of the funniest people I know are autistic. I’m known for running a comedy blog. My nephew and niece are funny, and they are great at roasting my ass when I die in video games.

My point is, use the “criteria” loosely, or you’ll miss more obvious clues to your child’s autism and consequential needs.

3. Socializing with Other Autistic Kids

One of the best things my mother ever did for me was bring me to a group for autistic kids to learn social skills. I remember that the adults running it were struggling to get us to do small talk. It’s common for autistic people to not be able to do small talk well, and I am no exception.

We were sitting in silence when I brought up Invader Zim, a Nickelodeon show that was on in 2003. I was obsessed with this show, and I wanted to talk about it, so I did. It turned out that the other kids were also obsessed. To the delight of the adults, we were all talking about our favorite characters, episodes we really liked, and jokes we thought were funny. I remember the silent excitement from the adults, like they had made a breakthrough. However, when they tried to shift the conversation back to “normal” small talk, it went dead.

I know now it’s because autistic people get to the point. We thrive in that kind of setting. Autistic people don’t follow the social norms of how conversations go, so instead of following a “normal” flow of conversation, we just talk about what we want to. Even when we make friends with normies, it’s nice to have a break from the expected conversation rules. Even now, my autistic friends and I jump straight to talking about our special interests: we’ll talk about the puppetry of Little Shop of Horrors, Leiji Matsumoto’s work, flags, DND mechanics, and The Magnus Archives in a single conversation.

And there are so many rules to conversations that allistic people have. The main one is maintaining eye contact. It supposedly shows you’re listening to the other person. If you aren’t maintaining it, you’re clearly not listening. Or it means you’re lying about something. Those implications never made sense to me. Ask me if I’m listening, confirm that I am, don’t assume I’m not over arbitrary body language. And if I’m really honest, if I’m making direct eye contact, I’m actually probably staring at something on your face. You know, gotta fake it ’til you make it.

There are also the rules for switching a topic. I used to find myself in this area where I’d be considered weird for changing a topic when I want to, but I’m also weird for not going along with a conversation changing when I had something to say on a topic. The flow of conversation almost feels tacitly decided on.

Small talk to me is the worst expectation for social interactions. The irony of small talk is that autistics are hounded about how we don’t show interest in other people in “proper” ways, but then we’re also required to ask non-questions; somehow, to show my caring about you, I need to ask you how’s the weather, even though we both were outside at some point, or “how are you?” with the specific intent of receiving an “I’m fine” whether that’s true or not, because if I answer honestly and say “I could be better,” I might be dragging that person into a conversation they don’t actually want to have. All these rules exist, but they don’t come together. Small talk isn’t always bad, but I can’t imagine having it with someone I don’t know well or at all. I’m okay existing with other people in a space in silence. I feel like I do it solely to deflect any undeserved suspicion.

If you want to know what it feels like to navigate conversations like this, one of my favorite game series is called Persona. One of the major mechanics of the game is that you can interact with people in-game and improve your social standing with them, and doing so makes your character stronger. However, when you interact with these characters, there are moments when you have to make the right dialogue choices to make them like you more. Sometimes you’ll have multiple choices that are very similar, and it feels like there’s no difference between your choices, so you think it’s unimportant, and then you find out that the question had a right answer. Or you’ll have a few choice answers and you’ll see an obviously bad thing to say to anyone, and so you avoid it, only to find out that, actually, that bad thing to say to a person was the right thing to say and you were supposed to choose it. It can be frustrating to want to do well in this game and not know what the right thing to say is. So how can this be my favorite game series if this is an important function that reflects real life? Because I’m a cheater and I just search the correct dialogue choices online.

I do occasionally find myself thinking back to that meet-up years ago, and I think about how we got straight to the point and that’s when we were all enthusiastic. These specific rules for conversing hold us back, even though we’re capable of conversing if we’re allowed to go by our own rules.

I can easily say, “Let your autistic child speak how they want to whoever because that’s who they are,” but I know that won’t help them socialize. I genuinely believe societal expectations for what constitutes a “proper” conversation should and needs to shift so all people, autistic or otherwise, aren’t demonized for not doing everything perfectly if they weren’t being purposely rude or mean. However, that will not happen tomorrow. That being said, if your child were just able to interact with others who converse similarly, I feel like some stress would be lifted off of them. They won’t have to worry about if the conversation was weird for once, or find out they weirded people out and ostracized themselves.

4. Stimming

Most of my stims are always calming and grounding. I might stroke my arm or my finger occasionally, but my main stim is doodling. Since middle school, I’ve always doodled on everything. It actually helps me focus better. Even my notes from college notebooks and notes from work meetings are covered in scribbles. Consequently, I’ve been spoken to at most jobs I’ve worked at as an adult for it, though most of my superiors have thankfully understood. Only a month before writing this, I had to explain to my manager why I was doodling during a meeting. I’m grateful that he was understanding about it being an autistic stim, though he was less understanding about me also saying “shit” twice during that same meeting.

I also have throat stims, which is when I quote funny lines (usually yelled) from YouTube videos and shows. It just feels good.

I’m over thirty. My grown ass can’t stop, probably won’t stop, and neither can your child—nor should they. I’m relatively “lucky” to have inconspicuous stims and even those get me noticed. Help normalize your child’s more noticeable stims. It most likely makes them feel good. Unless it’s actively harmful to them or someone else, let them stim and make damn sure other adults in their life respect it.

5. Gender and Sexuality

Oh, hey, did you know there’s been studies that show there’s a sizable overlap of autistic individuals who are also trans/non-binary in some way. I can tell you that it’s probably because if you have a spectrum disorder, where you’re not concerned with social norms, you probably won’t care about the gender norms pushed on everyone, so it’s easier to explore your gender.

I personally forgot I had a gender back in the mid-2010s, and I haven’t been bothered to care about it since.

It’s also funny to me that everyone thought I was gay because of how I dressed in middle and high school, but my clothes were never related to my sexuality. I wasn’t gay because of how I dressed, because I’m not gay. I’m bi because of my attraction to men, women, and nonbinary people.

Basically, please be open to any of your kids not being heterosexual and/or cisgender.

As I stated earlier, my biggest concern was comfort. I was not always concerned with how others perceived me. The best way to describe my own personal experience in how I navigated my own sexuality is that I actively didn’t do so. I experienced and decided things as they happened. Until my senior year, I thought I was just straight. I was attracted to boys. I wouldn’t realize otherwise until my senior year of high school, and while I had crushes throughout high school, they weren’t my priority. I wasn’t concerned with dating until college. In high school, how I dressed or looked to others was not affected by this. Not that I dressed ugly; my mom made sure that if I dressed in boys’ clothes, that the outfit looked good.

It’s hard to explain, but the idea that these two things could affect one another, that how I dressed and my dating life might influence the other, never occurred to me. It wasn’t quite a direct thought that the person I liked should accept me for who I am so much as it never occurred to me. After all, I did have a boyfriend during high school, and later in life, I realized there were boys who were interested in me (though I wasn’t aware they were dropping hints of such since I couldn’t read those cues). And when I eventually realized I was bi, I didn’t panic. I remember thinking, Oh, okay, you’re bi now, and expanded who I sought out. Dating’s not easy for the obvious autistic reasons, but at least I’m not struggling to figure out what I’m looking for, and that has made the absolute nightmare that is modern dating much easier.

But all these things came together for me because I was allowed to explore them how I wanted. I was able to see what kind of partner I wanted no matter their gender because I was allowed to think for myself and didn’t concern myself with what society said I should want. I can’t say that I’m completely immune to what society pushes me to find attractive or what I should have in a partner, or how I should be putting myself out there for others to see, but I’m fully aware of when that’s happening. I’m fully aware of how I feel about people. In my eyes, your role as a parent in regard to dating is to observe, and advice is helpful if it’s sought out, but don’t be condescending or think that you know what is best for everyone as if there’s one answer. Letting us navigate our sexuality and gender and how we want to express it until we come for advice is beneficial for us. Society pushes a heteronormative ideal for all of us, so whether your child is cis and hetero, or figures out they’re trans or bi or gay or a lesbian or whatever else, we’re gonna catch crap if we’re not 100 percent following heteronormativity perfectly. The least you can do is not add to it.

6. Overall, just be open-minded. Roll with everything. Consider what may be social constructs.

When you just roll with things and keep an open mind, it’s easier to see how certain expectations you have are just social constructs. When you challenge why certain manifestations of autism bother you, you’ll see that it’s society’s rigidity for how we should act and behave that’s the issue.