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An Autistic Adult's Perspective on Autism

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When you hear the word “autism,” what’s your initial thought?

Maybe an older child, specifically a boy, yelling and kicking and screaming in the grocery store as his mother tries to hold him down, giving everyone around them apologetic looks.

Maybe a high schooler who trails along behind a special education teacher, “playing” with stim toys, who doesn’t notice other kids are teasing him.

Maybe a kid who flaps their hands and bites on their shirt and lets out random words in the middle of class.

If any of these examples were your first thought on what autism looks like, you would be peering through just a small peephole as to the broad spectrum of people who are autistic. Did you know in 2014, more than 3.5 million Americans had been diagnosed on the autism spectrum? That ranges from people able to live on their own and be mostly independent to people who can’t live on their own and need constant support from others. I happen to sit on the portion of the spectrum where I can live independently and appear somewhat “normal” in the public, but my head is where most of my characteristics are located. At first glance, I just look like an incredibly introverted adult who has a severe case of social anxiety. While that is the truth, there’s so much more that goes on in my brain than you may think, and it shows in small things I do.

For example, a common autistic trait is becoming attached to the point of obsession with a certain topic, what many of us love to call a special interest. My special interests have varied throughout my life, from animals to celebrities to books to movies. Right now, at this point of my life, I have a very strong attachment to the band twenty one pilots. You wouldn’t know this by looking at me, but it shows in my likes and favorites. They’re on my phone and computer wallpapers. I listen to their music constantly. I create fanart of them when I have some free time and feel the need to sketch. The list goes on and on.

Another trait that runs prevalent in my being is I rarely show emotion. If you’ve read posts by me before, you will notice I made a post entirely about masking, an autistic trait that can lead to mental harm the longer it’s used. To make a long story short, I learned how to mask my emotions because I was terrified of people making fun of the real me, the “weird” me, and it’s how I lived my life. I’m beginning to find people who accept me for me and want me to be open with them, so I’m learning bit by bit to peel away the mask that’s been glued on for so long.

Now, every person with an autistic brain is different. Some autistic people have learning disabilities, and some don’t. Some have anxiety, or depression, or are bipolar, or have OCD, ADHD, ADD, you name it. Others don’t. Some autistic people use repetitive sounds or count repeatedly on their fingers, or they have a strict way of doing things. These repetitive sounds/actions are called “stims.” Autistic people may use stims to calm their thoughts and minds and to find something little to focus on when things get overwhelming. Common stims are humming, hand flapping, rocking, blinking, pacing, and using stim tools, like fidget spinners or chewable jewelry.

Many autistic people resist the idea of change. For example, I have a routine I almost always follow, and if that gets messed up in any way, it rubs me the wrong way. If a plan I make suddenly gets canceled, or if someone has to reschedule, it leaves me feeling lost and confused. Traveling from a big place to another big place and back in a day leaves me incredibly overwhelmed and prone to anxiety attacks. I can imagine most like-minded people can say the same about their own experience.

Let’s give a real-world example. If you’re a neurotypical (someone whose brain is not neurodivergent — having ADHD, autism, dyslexia, OCD, etc.), you don’t necessarily view the world in this way. You may not be easily overwhelmed by the bright lights of a gymnasium or a small sound that doesn’t stop, like a droplet of water falling from the ceiling repeatedly. You may feel comfortable approaching people because you may not think twice about the conversation you are having. You may not have a central topic that your life practically revolves around. You may not notice how voices overwhelm you in public. You may not have to mentally prepare for speeches or social gatherings. You may not need to stim to focus. You may not find it difficult to find and keep friends. And you know what, that’s OK. You may not ever understand how an autistic person views the world or how they choose to live their lives.

But that should not stop you from reaching out and asking them what that looks like. That should not stop you from being honest with them when they do something you’re not used to or do something you have questions about. For me, I find it incredibly difficult to talk about my special interest because I’m afraid my passion will overwhelm people and they’ll feel inclined to leave. Not many people understand just how passionate I can be about something I care about and have spent a lot of time learning about.

So if you ever want to talk to an autistic person like me, maybe find out what their special interest is and ask them about it. Odds are, they’ll welcome the conversation. If you’re experiencing difficulty with an autistic person who is having trouble talking to you, they may be nonverbal or only talk rarely when they’re around people they know and trust. What you can do is earn that trust. Be kind, but don’t pressure them to talk to you. They’re more than likely overwhelmed by the fact that you’re new and you’re trying to talk to them when they’re unprepared and have no idea who you are or what your motive is, so always be kind. Don’t yell or get upset. And they more than likely will not make eye contact with you, so don’t pressure them.

I’ve had instances happen where I misunderstand something someone says, or I misunderstand someone’s body language and do or say something that doesn’t necessarily make sense to the person I’m talking to, or they take offense to it and I end up losing a friend in the process because they didn’t stop to ask questions.

Ask when you don’t understand. Please don’t expect us to speak up when something out of the ordinary happens because we more than likely will not out of fear.

It doesn’t hurt to ask someone about themselves. It doesn’t hurt to read what they share.

If you have questions or if you’re confused by something I say or do, don’t wonder. Just speak your mind, and I will be honest if I can be!

We’d want the same from you.

Getty image by Victor_Tongdee.

Originally published: October 19, 2018
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