"I Don't Remember You Being So... Autistic"

Image is of me, a pink-haired,
female-presenting person
wearing a black and white top
with a black and pink scarf and
pink over-ear hearing protection.
Background is lilac-colored.

Believe it or not, there are people in my world who still have a hard time accepting that I am autistic, because it doesn't fit with their memories of me in childhood or early adulthood. Some of those people have openly stated, "You never seemed autistic to me." Sometimes, I get the feeling they intend such a statement to be a compliment (it isn't). Other times, it seems to be more of a statement of doubt regarding my diagnosis.

There are others who are able to easily accept and understand that I'm autistic and always have been, but some have suggested that I've become "more autistic" over time. Is that even possible? I mean, being autistic isn't like being caffeinated. I haven't just been pouring myself an extra cup of The Autism every morning for the last few years.

Here's what I've come up with:

I'm exactly as autistic as I have been since birth. However, what those folks from my past remember as me being not-autistic or not-as-autistic is actually autistic me, in younger form, with more energy and desire to mask my neurotype and try to "pass" in an allistic (non-autistic) world. 

Whether they know it or not, what those people are saying is:

You used to put in more effort to make people like me feel more comfortable with you, despite the toll it took on your emotional, physical, and mental health.

The thing is, I never did "pass." I was always treated like an outsider by most of my peers, and the few people who did accept and value me knew exactly who and what I am. Maybe they didn't have a word for it ("autistic"), but they knew I was different than most people, and assimilation was not a requirement for their friendship. 

It took me a long time to realize two important things: First, the energy I spent attempting to appear like others was wasted... I would never be an insider to certain groups. Second, there are people out there who do not demand that energy as a condition for acceptance. 

Those two realizations were life-changing.

No one outside my home knew it, but I could barely get through the day at school when I was young. I would come home and completely melt down--often in violent, harmful ways. I didn't have the knowledge or tools to understand why it happened, and I wished so very much that I could control it, but I couldn't. 

When I went off to college, there was no "home" to melt down in. My campus was very active and involved, and cultivated a climate of connection, so there was a lot of pressure to be social at all times. By the end of the first year, I was so burned out I had to drop out. 

Entering the workforce as a young adult was much the same. I had to get through each day, engaging with coworkers and clients or customers, until I could break away and break down. My "melt down" actions took different forms, and self-destructive or risky behavior was often how I dealt with the emotional toll of feeling like I had to be "on" all the time. 

As we grow up, a lot of societally-enforced messages about socializing and interacting with others are either precisely and methodically taught, or reinforced through aversive responses. That is, we are taught to say "please" and "thank you" and to share our things directly, but we are indirectly taught things like forced eye contact ("Look at me when I'm talking to you!"), that we must refrain from oversharing about our special interests ("Give it a rest, already! No one cares that you like to read about serial killers!"), and that we must--at all costs--try to behave, dress, speak, and present like our allistic peers ("Maybe they wouldn't tease you so much if you made more of an effort to fit in.").

The result is that every interaction ("Good morning," for example) is dominated not by the external connection but by internal struggles and conflict. 

Am I making enough eye contact? Too much? Am I staring?

Am I talking too much? Not enough? 

Is it my turn to talk? 

Are they getting angry? Bored? Annoyed? 

Stop fidgeting! 

Look at them when they are talking to you! 

Don't talk about serial killers!

Act interested. It doesn't matter if you aren't.

What does "interested" look like?

Pay attention!

Don't stare!

Look at them when they are talking to you!

Add to that the pressure to make and have friends, when such relationships are confusing and confounding. Autistic kids and young adults are often taken advantage of because we are taught a lot of "rules" about making and having friends, and we assume that if we hold up our end of the deal (Be Kind. Share Your Things. Be Helpful.), other people will automatically be our friends. And when we think a person is our friend, we will often do what that person wants without questioning because we assume everyone follows the same rules about making and having friends. We may also make inappropriate overtures, such as gifting an expensive or personally precious item to someone who we think is our friend. The problem is, that person may or may not consider us a friend, and such overtures clue allistic peers in to the extent of our desperation for acceptance and make us targets for exploitation. 

The pressure to be accepted may never fully go away. I'm convinced of that. I'm 47 years old and it still hurts when I'm rejected by peers after I've followed the "rules" of making and having friends. It isn't so much that I truly need those relationships as it is that I've been conditioned to believe I need them, so the failure to cultivate them feels like personal failure. 

However, a couple years ago, I stopped trying so hard.

Despite the loss of a household member to COVID-19, the rest of the world shutting down proved to be incredibly healing for me. I no longer felt pressure to be "on" all the time, and my mental health improved.

I realized it was the culmination of an incremental process of letting go of my own expectations that I would be able to assimilate into allistic culture, as well as eradicating my tendency to capitulate to the expectations of others. I had slowly been putting less pressure on myself to hide who and what I really am, and learning to embrace my true self. 

Shockingly, I didn't fail to succeed. I honestly expected to, but I was so weary I didn't care. I'd grown up believing that if I didn't "at least try to fit in" and meet the social and communicative expectations of others, I would be not only alone, but also barred from any opportunity I might want access to. 

I went back to college during the 2020 shutdown, but I did it on my own terms.

I reached out to every professor before courses started and introduced myself. I told them I'm autistic, and what to expect from me in terms of communication and interaction. I told them my communication is sometimes considered blunt, but it is always honest. I stated eye contact is difficult for me, and lack of it should not be taken as lack of attention because I hear and learn more when I'm not forcing myself to maintain it. I told them what my needs are in terms of receiving communication and specifically, critique: Direct is best, because I won't pick up on suggestions offered gently. I told them what accommodations I qualified for through Disability Services, and accommodations I need that Disability Services can't offer me. 

I figured I'd just put it all out there, and take the pressure off myself to be or behave in any way that was inauthentic. If I was met with rejection, so be it, but I wasn't going to add the stress of having to "perform" as an allistic-passing person to the stress of being a non-traditional student who was already juggling parenting of multiple kids with newly added college commitments.

I wasn't rejected. 

Instead, I was thanked for the frank and productively critical disabled rights perspective I brought to classes. My work and talents were appreciated. Although I had a hard time relating to many of my classmates who were the ages of some of my kids, I found connection with several of my professors, and learned I am really, really good at a lot of things when I'm not distracted by forcing myself to behave or present in ways that are not natural for me.

I've even made a few authentic friends, and it's comforting to know and understand the parameters of those friendships. There are no surprise rejections because they began with me being open about who I actually am, rather than a forced, performative version of myself I will ultimately be unable to maintain, longterm. 

Living authentically and openly autistic has been personally freeing, and it has opened far more doors for me than trying to "fit in" with a culture that has overwhelmingly rejected me in the past.

It makes some people uncomfortable.

It makes some people think I've become "more autistic" over time.

It's distressing to some people that I don't do more to make them comfortable around me, as I have in the past. 

It makes some people think they are invited to critique my deliberate and conscientious decision to not cultivate in my autistic children the same lifelong pattern of self-abuse I developed. I am not interested in forcing them to mask their autistic behaviors, communication, and ways of experiencing the world. I don't teach them they need to change. Instead, I try to teach them about what I've learned about allistic people, and tips for engaging with them, when we must, without compromising or apologizing for who we are.

I received a letter from my mother-in-law last year, detailing all the reasons she thinks I am failing my children, and all the reasons why people "hate you... but would never say so." Most of the things she listed were to do with my (autistic) communication style and ways of being in the world, whether she realized it or not. Her assessment was that she thinks I need to "find Jesus." (Been there, done that... dig far enough into my blog or read my first book and you'll find it, along with some seriously misguided political beliefs that I've since disavowed.)

I've found myself, and it's enough.

I am enough.

I'm exactly as autistic as I have been since birth. That hasn't changed.

What has changed is my willingness to compromise my own well-being--and that of my children--in order to gain the acceptance of people who are never going to fully grant it, anyway.

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