Transcript of the Episode

5 Things People with Autism Wish You Would Stop Doing

The more people on the autism spectrum I meet, the more I learn about my own biases and assumptions about them. Despite many years of working with families and raising my own autism-affected son, I am amazed at how much remains misunderstood. Perhaps that’s largely due to the nature of autism spectrum: what’s on the outside often doesn’t match what’s on the inside.

I recently met a 10-year-old boy who types on an iPad to communicate. He cautioned his teacher not to listen to his actions, but rather his words. For example, when attending a social gathering, he would walk in circles and make verbalizations that sounded like whining. This led others to assume he was unhappy or didn’t want to be there. He was quick to correct them by typing that this was how he regulated himself in situations he found overstimulating. Once he had found a way to communicate, he wanted to make sure others knew that what his actions seemed to communicate often did not match the way he felt.

This got me thinking: If he feels misunderstood, how many other families are making the same mistakes with their loved ones affected by autism? Here are the top three things I’ve seen people do that those on the spectrum have indicated they do not like:

1.Talk about them as if they aren’t there

First, let me say I am as guilty of this as the next parent. There were years when my son was younger when I assumed he didn’t understand, so I often spoke about him in front of him. I did this with teachers, therapists, family members, and friends. Many of us make assumptions about people based on their responses to us. When a person doesn’t make eye contact and gives no indication they’ve heard you, we may assume they don’t understand or aren’t paying attention. That isn’t necessarily accurate.

This practice is also difficult to break because many kids on the spectrum are always around due to their need for constant supervision. So I’ve started either waiting to have conversations I don’t want my son to hear, or I’ve included him by telling him I want to discuss a certain topic with a teacher or therapist.

For example, telling your child, “Jimmy, Mrs. Jones and I are going to discuss your progress in class and if you’d like to add anything, I want you to let me know however you can. I know you will be listening, so I want to respect that.”

If Jimmy really can’t understand you, you’ve lost nothing. But if he can, you just showed him tremendous respect, which can only benefit your relationship.

2. Assume a lack of response is defiance

Many people with autism spectrum issues have poor motor planning ability. Motor planning is different than motor skills. A person may have excellent motor skills (i.e., ability to grasp and use a pencil correctly) but may not be able to motor plan what they want to write (i.e., their name).

Perhaps the greatest lesson I have learned from my son and from the people I work with in therapy is to never judge their abilities based on what they show me.

So, the child who has been told eight times to get out of the tub just sits there, and the parent gets annoyed at the “defiant behavior.” This was my own experience with my son. When I learned about his poor motor planning, I realized he couldn’t always get his body to do what he wanted it to do. Now, instead of asking him to stand up, I remind him to bend his knees in order to place his body in such a way that he can stand up. A light touch on his knee can also help him figure out where his body is in space.

This was a mind-blowing revelation. I began relating it to other things I knew he could do but, for some reason in that moment, wasn’t able to follow through on.

3. Not giving enough wait time

Whether we’re asking our children a question, wanting them to respond to a request, or checking for understanding, none of us are giving our children enough time to respond. IN fact, we often will wait about 3 seconds on average and then either repeat or rephrase the question. This causes the child to then have to reprocess what was said and can lead to a great deal of frustration. Instead, allow at least 11-12 seconds before trying to determine whether your child has understood before saying anything else. Auditory processing is often affected by autism, and this means they will need more time and patience from you so their brains can catch up. This is a processing issue, NOT an issue of intelligence. Often using pictures, sign language  or written words in conjunction with what you’re saying verbally, can help your child understand better because you’re accessing several modalities at once. When My son was younger, we watched sign language videos called signing time, and I would use a few signs to help his receptive language skills. I also was sure to let him know when I was going to ask a question that required a response, such as, “Ben, I want to ask you a question…” And just the other day, I wrote down several food options for lunch, and handed it to him, reading them to him and telling him “when you’re able to tell me, I’d like to know what you want for lunch.” Then I walked away and about ten minutes later- a whole ten minutes…he called from the other room- “grilled cheese!” This worked much better than studying there waiting and getting annoyed that he wasn’t responding.

4. Underestimate their abilities

Perhaps the greatest lesson I have learned from my son and from the people I work with in therapy is to never judge their abilities based on what they show me. So often, I assumed my son didn’t hear me when I asked a question, due to his lack of response. Giving him the space and patience of more wait time (without asking the question repeatedly) solved this issue. He now responds more easily, and with much less frustration.

I know a 20-year-old woman who spent most of her life unable to communicate her wants and needs effectively. She recently learned how to type on an iPad, and it turns out the “low IQ” people assumed she had isn’t so low after all. She is learning how to share her feelings, thoughts, and even her goals with the people who love her, people who had made assumptions about her based on her output. She is an amazing, talented artist who recently had her paintings featured in a local gallery.

It’s so important that, as therapists, teachers, and parents, we make an effort to understand people with autism spectrum issues from their point of view. One of my favorite quotes, attributed to Albert Einstein, puts it best:

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

I started making this shift with my son by telling him I knew he was smarter than he could convey to me. That was met with a huge hug and a big smile.

5. Stop them from stimming and demand eye contact

Stimming is defined as any activity your child does repetitively; this could include but is not limited to hand flapping, reciting lines from their favorite book or movie, lining up toys, or pacing. many parents and professionals see these as “Autistic behaviors” and want to eliminate them.

But they serve a purpose. Every single time.

So while some behaviors are not socially appropriate for certain situations, if you can allow them to self soothe, do. Be aware of how your own biases might get in the way.

If you’re trying create a neuro-typical child, I want to encourage you to rethink this, it doesn’t mean you don’t want your child to improve their skill sets and move forward, but we need to be able to hold those goals at the same time that we accept they have autism.  And just like any other disability, or neurological difference, expecting your child to behave as if they don’t have autism is not only frustrating for both of you, but unfair to your child.

You wouldn’t ask a blind person to try harder to see, or a deaf individual to listen better. Or a child in  wheelchair to walk stairs. So why do we expect our children with autism to stop stimming and make eye contact as if these things will help them? The contrary tends to be true.

The individuals whom I’ve worked with tell me making eye contact makes it more difficult to listen to what I’m saying, and that swimming help them regulate their emotions. So the remedy needs to be focused on us, the parents and therapists, not on the child. They’re doing the best they can.

Music in this episode: Happy Whistling Ukelele by Sea Stock