Twilight Zone Autistic Edition

Happy March, readers!

Spring will soon be here, and although I’m hoping for a few more chilly nights to cuddle with my books and electric blanket, I am almost ready for it. Spring means many new things–new flowers, new births, new weather, you name it. I also hope starting this spring, we can continue to embrace new thinking about disability. But before we do that, we have to define the old thinking and sweep it out, kind of like spring cleaning. One type of old thinking I want to tackle today is, what constitutes “autistic?”

And now, submitted for your approval:

Imagine, if you will, a world in which everyone has chosen one set of rules to determine normal behavior. No one has delineated what these rules are; citizens seem to be born with the knowledge. They shake hands and say, “Nice to meet you” when meeting someone new. They switch subjects fluidly in conversation when etiquette calls for it. They “understand” when plans are cancelled or promises are reneged upon. They take in information from all five senses with effortless aplomb.

Yet there are some people in this world who do not follow the rules. These people know the rules, but only because those rules have been told to them over and over. They don’t really understand some of them. For instance, these people are shamed for being upset when promises are reneged upon. They don’t like their hands to touch, and get confused when they say “Nice to meet you” and hear “What’s up,” or nothing at all. They are told their hands are too active, their way of responding to sensory information is abnormal, and that they themselves are alien. They are called Autistics. Their behavior is called Autistic. Many people don’t know what Autistic actually is or means, but they have a sense it is threatening, or negative, or even tragic. At the stoplight up ahead you have entered…

THE AUTISTIC TWILIGHT ZONE.

Okay, so living with autism doesn’t have to mean living in the Twilight Zone. But sometimes it sure feels like that, especially when everyone around you brands everything you do as Autistic. I got the idea for this post after finding a new pin for my World of DisABILITY Pinterest board. The pin basically says, “Expect people to do what they promise. Get upset when they don’t. Expect people to treat you with respect. Why is common courtesy considered ‘autistic?'”

Why, indeed? And yet, it is. Example: Rami’s dad promises this Saturday, he will take Rami to ride go-carts, but on Wednesday, the family gets an unexpected phone call. Grandma is sick, and Mom and Dad need to help take care of her. Rami and Dad’s plans are cancelled, and Rami ends up at Grandma’s all weekend, but it’s not fun because she’s sick. Rami gets upset. He may have a full-scale meltdown or he may just say, “Hey, I’m mad because…” But because Rami has been diagnosed with autism, his parents write off his feelings as ‘autistic.’ They may even say, “Can’t you see Grandma is sick? This is not all about you!”

Now, can Rami’s meltdown be dealt with if he has one? Yes. Does he need to be kind and empathetic to Grandma? Yes–and he can do that. He’s probably already learning how, despite what people say about autistics having no empathy (what a bunch of ding-dongs). But, does he have the right to feel angry because Dad promised him something and can’t follow through? Yes. Even if Dad had a good reason, Rami can still be upset. He’s not “being autistic,” he’s having normal feelings. He’d have even more reason to be angry if Dad reneged for a selfish reason, such as a last-minute trip to the sports grill with his buddies to watch the game. But for some reason, people with autism are somehow expected to “understand” when this stuff happens, while neurotypical people are often told, “I understand how you feel.” A lot of times, people with autism don’t even get a basic apology for this kind of thing.

Another example, and one I’ve heard quite a lot: Adalyn has been diagnosed with autism, so her parents send her to social skills therapy/training. Her social skills coach tells her that the proper way to greet someone is to shake hands and say, “Nice to meet you.” So naturally, Adalyn tries this on a classmate of hers (let’s say these girls are anywhere between 10 and 14). The problem is, most kids don’t shake hands. They greet each other but don’t say “Nice to meet you.” Adalyn gets a bad reaction; maybe the classmate looks at her weird or says something hurtful. When Adalyn reports this back to the social skills coach, he or she simply assumes Adalyn didn’t “do it right” or didn’t understand instructions because she’s autistic. Adalyn will probably be written up as “failing” to meet a social skills goal.

Here’s a third one, which is more common in the adult world. Celine works at a large creative firm–we’ll call it a publishing company since I’m familiar with that world. She has been diagnosed with autism, but only her supervisor knows. During lunch, Celine shares an idea for a marketing campaign with several coworkers. At the next day’s team meeting, her colleague Brooke claims Celine’s idea as her own. When the women are alone, Celine demands to know why Brooke stole her idea. She’s visibly upset. Brooke reports this to the supervisor, who calls out Celine for acting “autistic,” though perhaps not in those words. Celine is expected to understand that her idea was not copyrighted; therefore, Brooke has some right to it, especially since Celine shared it. Celine is accused of being aggressive or having an outburst, as she has been before when responding to disrespect.

Call me kooky, but in the spirit of upcoming St. Patrick’s Day, this all looks fishier than green beer. Yet it happens in the real world all the time. Autistic people are penalized for being themselves, and “autistic” is used as a byword for something other people don’t want to be. Now yes, I do understand that sometimes social rules can be complicated. If Celine yelled at Brooke about stealing her idea, yes, that would be considered disruptive. If Rami disrespects his parents because he’s upset that he can’t go go-carting, that’s a problem. My question though, is why we are redefining common courtesy, more to the point the expectation of it, as something only autistic people engage in.

Think about it. Would you say to a Muslim colleague who greets someone in Arabic, “You’re doing that because you’re Muslim, but this is America.” Would you say to a black child, “White kids don’t throw tantrums when this happens; why are you doing it?” Would you tell a lesbian coworker, “I didn’t steal your idea. It’s not stealing if it’s not copyrighted. Do you think I’m discriminating against you or something?”

No, hopefully not. So why are we holding people with autism to an entirely different set of standards, yet changing those standards whenever we feel like it? Why are we telling them they have to be polite, let others go first–in general, “play nice”–when we ourselves don’t do it? Why do we shove down autistic people’s throats that they have to respect others, when neurotypical people constantly disrespect them? Show me the exit to this Twilight Zone ride, I want off!

So, what should we do instead? Let’s go back to our three examples and see what happens when we treat autistic people’s feelings and expectations as normal and right.

Rami is upset with Dad because their plans were cancelled. So Dad sits down with his son and says, “Gee pal, I know this must be a disappointment. Why don’t we think of ways you can help Grandma feel better? If things aren’t too serious, maybe you and I can slip out for a little guy time later. Mom and I will make sure you have fun things to do, and that we spend as much time with you as we can. Do you have any questions about what we’re doing or what’s happening with Grandma?”

Adalyn tells her social skills coach the “nice to meet you” thing didn’t go well. In some cases, her parents or guardians may get involved, suggesting that certain techniques may not be best. (Remember that if Adalyn is a minor, she may need some help self-advocating). Ideally, the coach says, “Okay, let’s try something different. How about X, Y, Z?” Ideally, the coach also asks Adalyn how, with whom, and under what circumstances she’d like to socialize. The coach then tailors Adalyn’s work to that as much as he or she can. After all, you socialize in a different way at the mall than you do the park, or attending a friend’s game or recital.

Brooke does tell her supervisor she’s upset because Celine yelled at or demanded something from her. The supervisor listens, but ideally, she also gets Celine’s side of the story and believes it. The supervisor may say something like, “I didn’t know that’s what happened. Would you like me to speak to Brooke or do you have another idea?” If Celine has a mentor–which all people should, autistic or not–maybe the mentor can say, “Wow, that was unfair. Do you want to talk about it?” Then maybe the mentor can explain, in an appropriate way, why yelling didn’t work, or how Celine might approach the situation next time.

See the difference? I do, and I like it. Yes, people with autism should have that part of themselves acknowledged. Yes, sometimes it requires thinking outside the box, but I never liked the box. Instead of saying, “Oh, he/she is just doing that because of autism,” I suggest we try saying, “Oh, he or she needs something I’m not giving. Let’s work together to figure out what that is.”

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