How Do You Explain Autism? A Personal Look
“What’s his autism?” asks my son, whom I’ll call Caleb, as we are packing his bag for swim team practice. He’s talking about a school friend who, like him, is on the spectrum.
“What do you think it is?”
“Well,” he says, “he gets frustrated when the schedule changes, just like I used to.”
“So you don’t get frustrated anymore?” I ask.
“Not over the schedule changing. I understand it, though, because I used to be like that. I don’t have that kind of autism anymore.”
“Oh,” I say. “What’s your autism?”
“I don’t like the alarm when we have fire drills. It’s not the noise but the flashing lights. None of my friends understand that.”
“What do you think you can do to overcome that?”
“Well,” he says, “I have a plan that I am going to tell Mrs. Hammond about and she can help me.”
“Great,” I say. “Now, Coach Johnny will be there today at swim practice, and you know he likes lots of attention. What do you think you should do about that?”
“I know, I know, I have to say hi and smile. He needs that.”
For my husband and me, teaching the autism spectrum disorder (ASD) diagnostic criteria to Caleb was not just about increasing his understanding of his own needs and behaviors. It was also about getting him to consider the needs and behaviors of others. The idea is this: if he can understand others’ behaviors, then he has already understood his own. The criteria for ASD are easy enough to read and can seem very straightforward; however, trying to teach someone with ASD about ASD can result in an ironic, recursive loop.
Think about it this way. If you had been diagnosed with ASD and you read the criteria for the first time, how would you feel? You may be confused, in denial, shocked, scared, or relieved. You would probably match some of the criteria to things you are familiar with about yourself, such as poor social skills or sensory issues. Will you relate to more of the criteria as you become more familiar with the diagnosis, or will you unknowingly start to acquire some of the characteristics on the list? Understanding that your friend’s autism may not be the same as your autism—that is, that there is no one meaning of autism—can prevent self-fulfilling prophecies.
Then, there is the issue of the divide between those with autism and those who are neurotypical. Thinking of these as discrete categories reinforces the idea that ASD defines you and, more disturbingly, that it marks you as damaged or wrong. That’s why it is important to think of certain behaviors, not people, as being autistic. After all, many neurotypical people will meet one or two of the criteria for autism. Sensitivities toward loud noises or bright lights, for example, are not the exclusive property of persons with ASD. Moreover, the DSM’s phrase “hyper- or hypo-reactivity to sensory input” can mean different things to different cultures—and even to different individuals within the same culture. Even if we do take the criteria to be clear-cut and meaningful, not every person with ASD will have all of the listed symptoms. One needs to understand that diagnostic criteria are imprecise rather than exact, culturally specific rather than universal, and relative rather than absolute. In other words, to understand what an ASD diagnosis means, one must employ the kind of flexible, non-literal thinking that persons with autism supposedly lack.
So how do you explain autism to your child with ASD? The simple answer is that your child does not need to understand autism; he/she needs to understand his/her own autism. The process takes years, because knowing who your child is takes years. Understanding the diagnostic criteria is one thing, but the fact is that not all of these criteria will apply. Some of these traits may develop, some of them may disappear, and some may never be present. But there is also a certain subjectivity to how the criteria are interpreted. When it comes to Caleb, one example would be “stereotyped or repetitive motor movements,” often called flapping. The person’s hands move in a flapping motion, which could be accompanied by not making eye contact, spinning, or jumping. Caleb never flapped his hands, but he does jump, a visible sign he is entering an internal world. We came to call this jumping “getting your agita out,” and we told him to let us know when he starts to experience agita. Essentially, we gave him a name for what was happening, and we helped him to become self-aware by asking him to keep us informed about this need. This led to our learning about “silent agita.” Caleb taught us that it is the same as regular agita but without the jumping. It can be performed any time that regular agita is not appropriate, such as at school or the movie theater.
And so it continues. At our prodding, he observes behaviors, questions why certain behaviors exist in some people but not in others, and considers what these behaviors might mean. We don’t discuss what’s different about autism. We discuss how all people are different from one another and how responding to behaviors will vary depending on the individual. We make note of people’s characteristics. Look at the person talking to everyone—he must like being social. Why doesn’t that person want to shake hands? She might have a bad cold that she doesn’t want people to catch, or she could be undergoing cancer treatment.
In the case of Coach Johnny, the point isn’t that Caleb’s autism makes it hard for him to react to his coach in the “right” way. The point is that Coach Johnny needs a certain kind of attention, so Caleb should give him that kind of attention because he likes him.
I zip up the swim bag.
“You’re right. Coach Johnny does need that kind of interaction. He’ll appreciate it. So what is this plan you are going to talk to Mrs. Hammond about?”
“I’m going to talk to her about it, Mom.”
“Can you tell me about it, too? Just a little?”
“Mom, how long until we need to leave for swim practice?”
“We have about five minutes.”
“I need to go get my agita out.”
“OK, go ahead.”
This article was featured in Issue 64 – Teaching the Skills Your ASD Child Needs