Guest Blog: Putting Autistic People in the Driver’s Seat, by Lu Randall

Today’s blog was written by friend and colleague Luciana Randall, Executive Director of Autism Connection of PA in Pittsburgh. Lu started her career as an art education major and found many students with disabilities were included in her classrooms. Wanting to know more about how to help them, she went on to get her Master’s in rehabilitation counseling and has remained in the field ever since. She has been teaching and training professionals about autism, the brain, behavior, and communication since 2002. 

I hope you find her blog as insightful and enjoyable as I did!

~Maureen


New TV series about autistic characters are all the rage. My autistic friends and autism parents are so “over it” already. “Who is going to make a show about my son who is 11 years old, still in pull-ups, not talking, and stimming?” or “Where am I – an autistic, female, degreed professional?” Current shows tend to feature talking, white, heterosexual, young adult males – leaving out a huge chunk of our population who then feel further marginalized and unrepresented. To help prevent this, we can try every day to put autistic people in the driver’s seat, or in this case, the writer’s or director’s seat, in showing and telling their own narrative.

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Lu teaches about autism as part of her role as Executive Director

Recently I’ve been given a soapbox (idiom alert! – a location from which to speak about what’s on my mind to a large group of people*) at the Barber National Institute, to talk about autistic culture and help workers do their best with this population. I always feel a lot of pressure to do right by autistic people. Instead of searching Google for articles to prepare my talk, my very first request was to my autistic colleagues – “I want to represent you correctly. Please send me your favorite videos about autistic culture.” Everything they sent me was first-person video. Nothing came from popular media! You can see these on the links below. But to summarize:

Autistic people** want to convey some important aspects of their culture. They are:

  1. Autism is a natural occurrence, not a disease, and not always causing disorder
  2. Society creates disabling conditions when it cannot or will not accommodate differences. “Disabled person” can be one acceptable term, because it tells that people are disabled by outside forces; they are not inherently flawed.
  3. Autistic people manage their bodies and their stress in unique ways. Some cover their ears if things get too loud, other flap their hands to express excitement or nervousness, others type or sleep or hum or talk to themselves, or hang out with their cats or stuffed animals – self regulation and self-soothing take many forms. Neurology and brain part shapes and sizes vary widely in autistic brains, which result in behaviors that may look unusual but are perfectly normal. As long as the behavior is not hurting anyone, allowing expression is the most respectful thing in the world. Imagine being home in your pajamas with one leg thrown over a chair, watching TV. What if someone constantly said “BOTH FEET ON THE FLOOR” “STOP TWIRLING YOUR HAIR” “STOP CHEWING GUM!” all day and night? That would be so offensive and belittling. So let’s try to let autistic people “be” in their own homes, for starters.
  4. If we are non-autistic, our inability to understand autistic body language or sounds could easily be seen as our disability! Not understanding an autistic person’s thinking can be a theory of mind deficit on the part of non-autistics. But we always make it the other way around. Is that really fair? I don’t think so.

Let’s try to meet in the middle, putting autistic people** in charge of teaching and telling, not relying on a TV network or a scientist’s article, and learn awesome new things about others, and ourselves. Here are the recommended videos to get you started: (yes, popcorn may be required for your viewing pleasure). Enjoy!

 

*When communicating with autistic people, be aware of your use of confusing figures of speech like this one. It’s okay to use them, but give the definition.

** The use of the term “autistic person” may seem different to you especially if you were trained in helping professions or journalism and were forced to use “person first” language. For most autistic adults, this is their preferred term. So I tend to use that.

Links referenced above:

 

How to be an ally to autistic people: https://www.youtube.com/watch?v=JsllOQeWqNg

What is stimming? https://www.youtube.com/watch?v=WexCWZPJE6A

https://www.youtube.com/watch?v=ysdPfRHE7zw Autism as a language, no words until translation and captions are at 3:14.

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