Friday, November 1, 2019

#AutisticsSpeakingDay: Growing Up Autistic Without a Diagnosis, and the Importance of Community

The author as a young child, with blonde hair and dressed in a pink jacket with a pink faux fur collar. She is looking down at a red rose.
Me as a young child, with blonde hair and dressed
in a pink jacket with a pink faux fur collar,
looking down at a red rose.
CN: mention of suicidal ideation

On Autistics Speaking Day, it seems appropriate to reflect upon the importance of community, but in doing so, I couldn't help but think about what life was like, before I found it.

I was not a child who was indistinguishable from my peers.

Instead, I was a child who stood out for various reasons:

My mom says when I was a toddler, I didn't point out things that were readily apparent to others. That is to say, when we were in the car and drove past a herd of cows, I didn't point, and say, "Cows!" because obviously, there were cows. Why point it out? Everyone can see them, so what's the purpose of exclaiming the obvious?

When I did speak at that age, people thought I was older, because I spoke like an adult. And that "tiny grown up" perception followed me throughout my childhood and youth, and a lot of times, it stood in the way of making friends, because kids my age thought I was arrogant, or weird, based on the way I spoke and tried to engage.

When I started school, I interrupted and corrected teachers and other students, and never understood why that was viewed as rude, disruptive, or inappropriate -- and certainly never understood why I was reprimanded or disciplined for it.

I had vocal and physical stims that were pointed out and mocked so many times by teachers and fellow students, I learned to try to stifle or hide them. I'll never forget my fourth grade teacher -- noticing how I scrunched my nose repeatedly during silent reading -- calling out from her desk at the front of the room, "That's not attractive, Christina-Marie." The entire class, naturally, turned to look, and laugh.

I tried to pretend to like the things my peers liked. I tried to look the way my peers looked. I tried to talk like my peers talked. I devoured "girl culture" magazines, like YM, Teen, and Seventeen, hoping to unlock the secret to being accepted by the other girls, but nothing ever "fit."

I did have a scant few friends that included me, but I always felt like an outsider, and worried so much that if I stopped trying so hard to be like them, they'd reject me. I probably imploded a lot of connections, either due to tiring of masking and pretending, or just sheer anxiety over what I imagined as inevitable... it's easier to walk away, than to be pushed away, you know?

I never figured out how to fit in with other kids, and I always preferred books to people, because books were never complicated. Books never had indecipherable expectations.

Teachers were equal parts fascinated, and frustrated, with me. If a subject interested me, I would dive into it voraciously, going far beyond the assigned coursework, but often became so fixated on a topic that it was difficult for me to "shift gears" and move on. And my struggles with executive function were hard for them to see, until they caused a "crisis."

For example, my senior year, my English teacher -- who recognized that writing poetry was my jam, and that writing reports on books I'd already read several times was not -- assigned me to an independent study for the second semester. "Go publish a book of your poetry," he said.

I spent nearly all of the semester studying publishing, design, and layout (instead of writing content) because I wanted the finished product to look great, lost a lot of my notes and original work, and ended up scrambling the last week of the semester to throw something together. It turned out really shoddy, and I could tell he was disappointed, but when I tried to explain how difficult it was for me to manage my time and materials, he didn't understand. He'd expected more from me, and I couldn't figure out how I'd failed so completely.

And there always seemed to be rules about how to be in the world that I didn't understand.

Be honest! But not too honest... don't tell someone you think their haircut isn't flattering, if they ask you what you think. Instead, say, "Wow! It's so different!" or something like that, because it's rude to say, "I liked your hair better, before."

Be yourself! Unless your "self" is the kind of "annoying" person that doesn't know how to wait for their turn to talk. Or unless your "self" is a person who speaks or acts differently than their peers. You should at least TRY to fit in! 

Express yourself! But not like that. No, don't do that. I mean, express yourself, but don't expect people to understand you, if you do it like that. There is something to be said for conformity, at some level. Conformity keeps you safe. Non-conformity makes you a target.

Follow the rules! But not all the rules need to be followed, all the time. Some rules are more important than others. And some people don't need to follow the rules, and sometimes, there are rules that you won't know, until and unless you fail to follow them.

Most of my childhood and youth was lonelier than anyone knows.

I spent equal amounts of time trying to be noticed, and trying not to be seen.

I entertained thoughts of suicide more often than I'm comfortable admitting.

"Why can't I...?" was a common mantra of self-hatred.

Why can't I make and keep friends?
Why can't I fit in?
Why can't I say the right things?
Why can't I do the right things?
Why can't I figure out why they don't like me?
Why can't I JUST be happy?
Why can't I JUST be "normal?"
Why can't I just... be accepted?

Not being diagnosed as a child created a fantastic incubator for self-loathing.

I never felt "seen" for who I was, and I could never figure out what was "wrong" with me.

Learning a few years ago that I am autistic was like a baptism, if you believe in that sort of thing. It washed away everything I thought about myself that had come before -- even if it didn't erase the scabbed-over pain of rejection and being mocked. It made me new, and whole. It gave me hope.

It also gave me community. And inspiration.

It gave me the type of friends I so longed for when I was younger -- friends who understand, respect, and celebrate who I am.

A welcome byproduct of that discovery was that it helped me to reconnect with and establish fresh relationships with people from my youth. No masks. No posturing. No more longing for friendships based on projection. Just, "Here I am. My world is quite lovely, and you're welcome to be part of it, if you'd like."

I am more comfortable with who I am, and the world around me, now that I've been able to connect with autistic peers and mentors.

That comfort and security are now so much a part of my being that I have no hesitation advocating for myself, or my children, when I or we need accommodations. I make no apologies for the way I need to access the world, and I don't encourage my children to, either.

It is so vital to me that my autistic children not only have a strong sense of identity, but also a fierce sense of community.

I never want them to struggle with trying to exist or behave in ways that are not genuine to them, and I never want them to feel like they have to hide parts of who they are, in order to be accepted, or listened to, or heard, or respected.

It is boggling to me that some parents don't want their children assessed for autism, or don't tell their children they are autistic, because they "don't want to stigmatize them."

To me, the only stigma surrounding autism is from people who don't understand it, or accept it.

To me, not knowing I was autistic was so much more harmful and painful as a child and young adult! Because I didn't understand who I was, I wasn't able to connect with the world in any sort of genuine way, and it was lonely-making.

I still struggle with things, at times. Identifying and explaining my emotions, for example. Working through and expressing those emotions, if I can identify them.

That's one of the reasons I started seeing a new therapist, recently.

She didn't have any real background on me, outside of knowing I was hoping to find a counselor who is trauma-informed, and knowing that I had experienced some significant gate-keeping by a medical provider, earlier this year.

She made notes as I went through a short list of topics I'd brought.

At the end, she said, "I'm looking over the notes I've made during this session, and I'm curious... Have you ever been assessed for autism?" I hadn't mentioned being autistic to her.

There wasn't a note of pity in her voice. There wasn't any pathologizing. It was strictly an acknowledgement of how I communicate, and of who I am, and how I relate to the world.

She sees me.

I explained how I'd found so much support in the autistic community, and she celebrated with me.

I knew I'd found a safe place. I'd found a place where the need for community is not only acknowledged, but when it is found, it is celebrated, and recognized as a strength.

The autistic community gives me strength, and so much more.

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  1. Thank you for this. I am not diagnosed with autism - in fact, I was assessed as a child and determined to not be autistic because my verbal skills were incredibly advanced for my age, rather than the reverse. So I was labelled "poorly adjusted" instead. But what you describe, that was my world through and through. Thank you again.

  2. This blog entry was all too familiar to me, and to my girlfriend, who also read it and related. I grew up in the eighties and nineties; I was in my teens before Asperger's Syndrome was even a real diagnosis. I remember an activity in school where everyone had to make a "nice" comment to each other person in the class. Everyone always said I was "unique." It was the only polite comment they could think of, kind of a backhanded compliment. After years of mental health treatment, a psychiatrist I was seeing said I may be on the autism spectrum. It clarified my past a lot. My girlfriend of 13 years has similar quirks, and we believe she is probably autistic as well. My childhood may have been a train wreck, but at least now I have found love with someone who understands me. We are always researching and discussing our mutual obsessions, without feeling judged, like usual. It was a hard journey, but worth it.

  3. Loved coming across your post... Completely identified with your logic behind not giving a damn about the bloody cows!

    I'm also going through the process of adult diagnosis... Most likely with Innattentive-ADHD as well..

    So I get the full dose of executive function impairment as well as the sensory sensitivity and oddballness... But never been a big one on stimming or routine, since Im naturally figetty don't even have a normal sense of routine to begin with! Bahah!

    Honoured to float by and stand and awkwardly try to figure out how to say hello across the crowded room of cyberspace!


    Aaron Scott :D


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