When we go to an elementary school to perform a student service, we leave our participants with bookmarks they can share with their families. On one side is information about our service and the importance of our nonprofit’s mission. The other side features 9 Ways to Interact With People With Autism, written by an expert on autism: author and advocate Sarah Stup.
1. Autism helps protect us from seeing and hearing too much. Please don’t hate our shield.
On a recent service evaluation, a teacher commented that the nine ways needed additional explanation. While I thought at first that this would be a great opportunity for discussion between caregiver and child, I also realize that not all parents of neurotypical (NT) students understand autism as well as those of us who’ve spent countless hours with children with autism, learning more and more about the way their brains work. So here’s my understanding of Sarah’s guidance for neurotypical people.
The word “autism” comes from the Greek autos
, meaning “self.” While the long-held, incorrect assumption was that people with autism were unaware of the world around them, we now know that they are capable of withdrawing to a certain degree. The autism shield protects an inner thought life as a safe place for retreat when the world’s bombardment becomes too much to bear.
2. Try not to stare. Sometimes we need to do unusual things.
Many people with autism are very aware of their self-regulating behaviors. They know that their hand-flapping, rocking, or verbal “stims,” as they’re sometimes called, are atypical mannerisms. Some people with autism are very self-conscious about the appearance of these “stereotypies” and prefer that you ignore them as you would if your neurotypical friend were twirling her hair (a socially acceptable self-regulating behavior).
3. We hear you when you complain about us. Find other times to talk mean.
Neurotypical people have made the terrible mistake of believing that people with autism who don’t have reliable speech are incapable of understanding others’ spoken words. Rule of thumb: Presume competence. Never talk about
a person; talk to
her, or if you must, talk about the individual in a respectful way in her absence.
4. Rudeness is not our intent. No sad faces, please.
People with autism often have a frankness that can be both disarming and alarming. Instead of making a facial expression you expect the person with autism to read and respond to, tell the individual, in a matter-of-fact but helpful way, that his choice of words or actions was not appropriate, and guide him to a better expression.
5. Real friends don’t judge our actions. Please find us inside bodies that work differently.
Many individuals with autism feel powerless to control their bodies skillfully. Whether they’re acting on feelings of sensory dysregulation or compulsions, they want you as friends to look past the physical symptoms of their disorder and see the inner person, who wants very much to connect socially.
6. See us as real. We are not shells with no inhabitants.
One of the most hurtful, untrue comments I’ve heard about individuals with autism is “The lights are on, but no one’s home.” The person with autism in your life is as real and whole as you and me. Treat people with autism as the whole beings with hopes, needs, feelings, and desires that they are.
7. With too much asking us to be normal, we feel like impostors.
Social skills are lovely to teach, but expecting people with autism to “act” more like neurotypical people will just be that—acting. Part of accepting people with autism is understanding that their different brain wiring affects all of who they are and what they do. Instead of trying to make individuals with autism be people they’re not, help them be the best them
they can be.
8. Try to help us, not control us.
There is no amount of consequating an autism-driven behavior that will extinguish it—no punishment, no discipline, no reward. Understanding what is driving the behavior will help you and the person with autism cope or come up with adaptations.
9. Raise hope to give us better futures. We need to aim high.
We need not look at autism as a terrible disorder with a low ceiling of promise, but as a marvelous opportunity to look at the world through a different lens and walk in different shoes. Be ambitious in your planning with your person with autism and thoughtful about the course you chart together to get there.
Guest blogger Chelsea Budde is the mother of two adolescents with autism spectrum disorders (ASD). In 2007, she cofounded Good Friend, Inc., a nonprofit organization that’s dedicated to advancing autism awareness, teaching acceptance of differences, and fostering empathy for students with ASD among their neurotypical peers. Since its inception, Good Friend has had a direct, positive impact on nearly 20,000 people in its pursuit of creating a culture of acceptance in schools.
Read about autism training.