Living with Autism: A Unique Anonymous Insight


As most college students are probably guilty of, I procrastinate. A lot. Whether it’s catching up on shows on Netflix or laughing at silly videos of cats doing weird things, the goal is to put off work and stress for just a little bit longer.

However, sometimes in these moments of stagnated productivity, you find the most intriguing and beautiful things. While browsing through reddit, I found this quote from a person living with high-functioning Autism:

 

From /u/personizzle:

“As far as terminology goes, this is part of the reason why I’m fine with using “disabled,” and in general, try not to get too hung up on the exact language others use. I definitely understand why some people shy away from using it — on some level, it implies that autism makes them a lesser person, which is an idea that myself and many others firmly reject. But at the same time, it has definitely caused challenges in my own life, and since it’s a spectrum disorder that affects everyone in different ways and with different severities [sic], I find it kind of presumptuous to insist that others reject any subtle suggestion that they’ve been affected negatively, especially people who are pretty clearly struggling with one thing or another. So especially for more severe cases, I have no problem with words like “disability.” Where I draw the line is with words and attitudes that paint autism as a plague that took away the “real person underneath,” or come with the implication that it they should be “fixable.” For better or for worse, in mild to extreme cases, Autism is an intrinsic, all-encompassing part of who we are and how we see the world, and is in no way, shape, or form seperable [sic] from an individual’s personality.

As far as stigmas/attitudes go, that’s a complex topic. […] a majority of challenges that I’ve faced, especially in recent years as I’ve learned how to [be more] Neurotypical better, have been external, stigma-related challenges, while someone who is affected differently than me may face very real, very difficult challenges which directly stem from the realities of their condition. Certaintly [sic], these people are not best served by simply saying “embrace who you are!” and turning away, there’s real help that we can and should provide them with. While the support that these different individuals need may be very different (Accomodations/targeted support are crucial for so many people, whereas I generally backlash pretty hard against suggestions that I use my diagnosis to get extra support since I feel I’m “close enough”), I think that it’s increcibly [sic] important that no matter how severely affected someone is, that the people around them keep general respect for everyone as people and as individuals in mind, especially because there are so many people who paint autism as a horrifying curse. It’s immensely harmful to individuals of any functioning level, to suggest that they’re burdens, sub-human, or need to be cured of who they are and always have been, in order to fill a vision for them held by others which never existed.

This goes for how we talk about and treat autistic people (see my post below for a truly horrifying example of candid talk around an autistic individual), but also, to an extent, the line between normalization and acceptance. If someone has autism, there’s a list of things that their caretakers set as goals for them. Speaking, no meltdowns, less weird interests, ability to deviate from a schedule, ability to feel empathy, general self-care, holding a job, making eye contact, reading faces, and so on. But so many people go about these things in immensley [sic] wrong ways, and some of the goals themselves are either relatively meaningless in the grand scheme of things, or even actively harmful. Some examples:

  • A friend of mine (also on the spectrum), was pressured into getting a job in his teens. He bounced around from various cashier-type jobs, never lasting more than two weeks. He was made to feel like a failure for this; that he’d never be able to be independant [sic]. But the simple fact is, the kinds of jobs he was being pressured to pursue were all TERRIBLE jobs for an autistic individual: Loud noises, constant motion, meeting new people every minute, may of whom are actively hostile towards you. He’s now absolutely thriving doing much more isolated work which suits him, but at the time, it was a crisis which made him feel worthless.
  • If a normal kid is interested in something, it’s celebrated, they have a passion. If an autistic kid is interested in something, it’s a symptom, and is often actively discouraged. If a normal kid is good at something, that’s a skill that they have. If an autistic kid is good at something, they’re not “really” good at it, that’s just the autism rearing it’s head. This is a horrible and pervasive attitude at all levels.
  • Empathy. Oh boy, this is a fun one. It’s a common misconception that autistic people don’t feel empathy. This is a terrifying idea to many people. The reality is, autistic people feel it, but often have difficulty expressing it, or do so in unusual ways. Yet this often becomes a HUGE point of focus. I’ve seen young children spoken to in the tone of voice one might use when training a dog, getting them to do things like hug on command. This is often viewed as a huge victory, but frankly, there’s a point where you’re just wasting the child’s time to make yourself feel better, rather than teaching them something that actually positively impacts their lives.

In short, there’s a big distinction between identifying specific challenges and helping people overcome them (just like you would for anybody), and making a futile effort to change a person’s identity, which simply leads to feelings of inadequacy and depression. Many people definitely face real challenges which we can help with, but everyone has to work on being a bit more accepting of differences which really don’t mean anything in the end, and it’s unfortunate how little people can think about that. I honestly broke down crying when I saw the recent Sesame Street initiative, because it was focused so, so much on acceptance rather than normalization.

The line that particularly struck me was in the storybook. “Flapping is what she does when she’s excited.”

I spent years of my life having flapping trained out of me.

It wasn’t wrong.

It didn’t hurt anyone.

It’s just what I did. “

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