I think a lot of the lack of understanding we have about each other comes down to the fact that most people judge the whole world on the basis of their own individual experiences. Many people interpret and criticize others’ behaviors, needs, quirks, and struggles from the perspective of their own minds, their own bodies, and their own lives. There are so many misconceptions about autism and autistic people, and many of them are based on these perspectives that differ radically from our own. To be on the autism spectrum is to be different… so, it’s impossible to understand our actions from a non-autistic perspective. Our behavior has to be viewed through the lens of our brains and bodies for it to be truly understood.
Why my best manners might look rude to you.
They say we lack social skills. But many autistic people (not all!) have different values and needs when it comes to socializing. My autistic friends and I relate based on shared interests−the how-are-you and isn’t-it-hot-out-there aspects of socializing do nothing for us. We tend to be very direct with other people, and in my experience, this seems to offend many people. They don’t understand how literal we are, so they read into our words and occasionally find a problem or insult that we never meant. They assume that like most anyone else, we often cloak our true feelings in more polite words. The complex rules of socializing in the typical world confuse me, upset me when I’m misunderstood, and generally leave me forever unsure about whether the other person could be mad at me despite saying they’re not.
Listen to what I mean, no matter how I say it.
Communication is another challenge integral to autism. I think people forget that communication always goes two ways–otherwise, it’s called expression. Autistic people are labeled with language deficit, while everyone else apparently sets the goal of how we should be. But when people take the time and learn about how we communicate, they almost always end up understanding so much more. They even notice the ways that autistic people make much more sense than the typical world! We have unique strengths… we know that communication is much more than words and that everyone has something to say. We are straightforward, even if we’re upset, so we don’t hide our anger at the other person for long periods of time, never giving it a chance to get too big.
The other big issue I’ve had is about means of communication. I am able to speak, but it ends up that people only see a part of me and only hear my ideas filtered through a mouth that may not say quite what it means. When I type, I am much more expressive, allowing people to truly know me. I was so excited by the freedom I had when I typed, and my family was excited to learned so much about me and why I say and do things they didn’t understand. But then I heard from autism professionals that typing is for attention, that using my iPad as a tool around other people is rude, that I was confused or lying when I was trying my best verbally but couldn’t quite get it right. I speak, I type, I make art… all of them are valid ways to communicate! The most important thing is that I feel like I have a voice, and I do… but some people just won’t listen.
Restricted Intense, Powerful, Fascinating Interests
One person’s perseveration is another person’s passion.
When it comes to the language we use to talk about autistic behaviors and interests, what Person A labels a perseveration might seem to Person B like a passion that holds great potential… but it’s up to other people to decide which one it is. It’s not up to the person… not when that person is autistic, anyway.
I was the kid who read before preschool, practically swooned when I learned to diagram sentences in middle school, and used that writing as the basis of my autistic advocacy. While I struggled in the classroom, I found the perfect online program to study for my Master’s in English and creative nonfiction writing–I wrote my thesis about how society thinks about autism and graduated with a 4.00. I still write, but now I also do some editing. Yes… there are people who actually ask me to be nit-picky and obnoxious! My love of words has never been mentioned in a negative light. They say I’m talented, passionate, and extremely detail-oriented!
When I first understood how much autism impacted my life, it was on my mind a lot. It helped me to understand myself, others, and the world. But others said it was “irritating,” “obsessive,” and “unhealthy.” Over time, that focus led me to start a blog, and now my days are largely spent doing advocacy work. Through it, I’ve learned that I am actually very creative, and now I use writing, poetry, graphics, and artwork to show others how I see the world. I’ve gotten editing work for stories and apps, won a state contest with artwork, and I’ve been co-writing a middle grade novel with an autistic character. I’ve served on national panels and spoken at conferences. I am more independent, because I understand my needs and can make them known better than ever before. With serious health issues that keep me in my apartment for weeks at a time, my advocacy gives me purpose, and I am never, ever bored. The best thing I get from advocacy… I finally have a real community and some truly amazing friends.
Change Your Perspective
Parents and professionals, why can’t you look at things differently?
Supporting autistic people is complicated. Sometimes parents or other supports have to modify the everyday world for a person on the spectrum. Other times, being different is more uncomfortable for the person than it is to change natural-but-stand-out behavior. It’s so individual, and that’s why it’s never good to think about autistic behaviors or attitudes as uniformly good or bad.
There is another option when an autistic person’s behavior is clearly different, and that is to change nothing. If you look at the situation and no one is being harmed, it’s often best to leave it alone, but sometimes parents and autism experts struggle to do that. I think it would help a lot if more people in care-giving or professional roles would look at things differently. They’d see that sometimes we have the very same needs they do, but we have another way of meeting those needs. Other times, our needs are unique. They are never pointless, senseless, or unimportant.
If you’re in a care-giving role but not autistic yourself, please… let go of your assumptions and don’t try to make sense of autistic behaviors based only on your experience as a non-autistic person. Try looking at the world from our view–read our stories, study our artwork, watch how we interact with the world. It can only lead to better understanding and happiness for you and for us, too.