Interpreting Autism With his new book “Uniquely Human,” Barry Prizant has helped change the conversation about autism from one about pathology to one about unique differences in thinking, communicating and relating. He offers strategies for demystifying those differences. Features
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Features  |   April 01, 2016
Interpreting Autism
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Special Populations / Autism Spectrum / Features
Features   |   April 01, 2016
Interpreting Autism
The ASHA Leader, April 2016, Vol. 21, 50-54. doi:10.1044/leader.FTR2.21042016.50
The ASHA Leader, April 2016, Vol. 21, 50-54. doi:10.1044/leader.FTR2.21042016.50
Elijah, a middle-school student on the autism spectrum, had a habit of breaking into song in the middle of history class. His specialty? Belting out “Circle of Life,” from his favorite musical, “The Lion King”—first in English, then in German, at top volume.
Obviously this didn’t sit well with the history teacher. But when the school called on autism consultant Barry Prizant for advice, Prizant was less interested in the behavior than what was causing it. So he sat down with Elijah and asked him why he sang “Circle of Life” in class. Elijah explained that when the teacher talked too fast, he lost track and became anxious, and singing his favorite song helped him calm down.
Prizant, who has worked for four decades as an autism researcher, clinician and consultant, saw that Elijah was actually using this socially undesirable behavior in a very adaptive way—to cope with his anxiety. So he helped Elijah find a more socially acceptable way of coping, which was to sketch “Lion King” characters when anxious.
This example gets to the core of Prizant’s bestselling book “Uniquely Human: A Different Way of Seeing Autism,” published last year to critical acclaim by clinicians, families, researchers and people with autism alike. In it, Prizant suggests a major shift in our thinking about autism: that the behaviors we often find troublesome are what people with autism spectrum disorder (ASD) use to cope with an overwhelming, anxiety-provoking world. And that if we ask why and listen—build trust, connect and help them cope—we can help propel them toward success.
The book—which Prizant notes has been reviewed with and touted as a complementary volume to Steve Silberman’s New York Times-bestselling “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”—offers “neurotypical” people practical strategies for understanding and supporting people with ASD. The approach is based on the SCERTS (Social Communication, Emotional Regulation and Transactional Support) Model, an educational framework for autism he developed with colleagues.
Beyond practical, the strategies Prizant offers are humane: like the approach used by a principal with a highly anxious seventh-grader on the spectrum (the student was new to the school). When the student was sent to her office following an outburst, the principal didn’t reprimand him. Instead she asked him if he’d like to share an orange with her. The student calmed down as they ate it together, and she continued to meet with him regularly to share oranges as a means to build a trusting relationship.
We talked with Prizant, director of Childhood Communication Services in Cranston, Rhode Island, and an adjunct professor at Brown University, about how we can get the world to stop and “share an orange” with people on the spectrum.

The reactions of autistic people are really just human reactions—on the part of people who are more vulnerable, more sensitive, more easily confused, and who have more problems communicating their difficulties and seeking support. So we need to humanize people with autism, educate others and get people in power on board.

In the book you give a lot of examples of the benefits of asking what’s underlying an inappropriate behavior, instead of rushing to judgment or negative consequences. But schools and parents are often pressed for time and resources. So how do we slow down and ask why?
We need to look at what best supports people with autism. It’s not just about asking why, which is the first step. It’s also about attempting to understand their experience, building trust and providing appropriate support. A major premise of the book is that people with autism have been terribly misunderstood. The rush to judgment too often comes up with inaccurate attributions about what people with autism are doing, why they’re doing it. What has really been validating for me is the response from people with autism who have read the book and say, “Wow, you really got it. How do you know our experience so well?” I have received similar comments from parents and family members.
A typical inaccurate assumption is, “Oh, he’s just trying to get out of doing that” or “She’s just being manipulative.” This is a neurologically based disability, and you can’t assume that a person with autism is engaging in undesirable behaviors as if it’s intentional or under their control. So to challenge these misperceptions, one thing I say (tongue-in-cheek) is, “Oh yeah, this child who has a diagnosis of autism stayed up till 3 in the morning last night figuring out how to make you crazy and manipulate you.”
Besides the misperceptions about being manipulative or purposefully difficult, what other “autistic” behaviors are often misunderstood?
Echolalia, or the repetition of speech, is a classic example. Back when I began my research on echolalia in the 1970s, researchers referred to it as “psychotic speech” and “meaningless parroting.” Some even said it was verbal aggression when a child echoed back to you what you said. For my doctoral dissertation, involving detailed video-analysis over a year, we found echolalia served many communicative functions and was an alternative strategy for acquiring language.
These findings were diametrically opposed to what the most prominent researchers in autism were saying at that time—dismissing echolalia as just another pathological “autistic behavior,” with the recommendation that echolalia should be discouraged or even punished. Now, thanks to our research, and subsequent research with findings consistent with ours, there’s been a total turnaround. Now I meet older people with autism who say, “That’s how I learned to speak, by repeating what other people were saying.”
What other behaviors are misunderstood?
I find that the term “aggressive behavior” is used too frequently and with little precision. Too often, it is assumed that if a child or a person with autism strikes out, pushes, kicks or flails, it is interpreted as aggressive behavior, as if that person is intending to harm you. And we’ve learned that, due to sensory issues and limited coping strategies under stress, many responses are attempts to “survive” or cope using less desirable means—similar to what has been referred to “fight-or-flight” reactions. In most cases, the person is not trying to hurt you. It’s a reaction to the feeling that, “I have no other way to get out of this room or to let you know how I feel when I am overwhelmed by all the noise, demands and chaos here.” In “Uniquely Human,” I also discuss the role of negative emotional memories and how those may result in behavior mislabeled as “aggressive.”
Speaking of which, in the book it was hard to read the example of the boy who didn’t want to go to the gym but was forced to and then thrown on the mat as punishment.
People with autism have historically been reprimanded, punished—even electrically shocked—for behavior that others didn’t like and totally misunderstood. For years, special education law has forbidden the use of so-called “aversive treatments,” but it seems every week the media report another significant case of abuse. Students with autism remain at high risk for experiencing significant degrees of stress due to mistreatment, even if the inappropriate use of teaching and behavior management procedures do not meet the technical definition of “aversive.”
Back to determining what’s underlying a problem behavior—which you say is key to changing it—what do you do when you’re having a hard time figuring that out, because communication can be difficult with kids and adults on the spectrum?
Let’s give that person the benefit of the doubt—that they are feeling emotionally dysregulated—and let’s provide appropriate support, rather than blaming them for their behavior. Based on the SCERTS Model, if an educator is feeling stressed and confused by the student’s behavior, we go back to: Due to the child’s neurologically based disability, they likely feel overwhelmed or confused. They may not have the coping skills (strategies to self-regulate) or the communicative skills to request assistance or support. So as a team, with the parents as collaborative partners, we brainstorm about what’s underlying the behavior and then systematically respond and provide appropriate support, and document how that systematic response is working.
Here’s a concrete example: A child is distressed and drops to the floor. A typical recommendation from a behavioral consultant would be to ignore the child (because, too often, it is interpreted as “attention-seeking,” and if we pay attention to the child, behavioral principles of learning theory indicate that we’re just reinforcing bad behavior). But from our developmental perspective, we would say, “Well, it is more likely that the child is confused or overwhelmed, and needs support the way you would support any child who is distressed and having difficulty.” So we would try to help that child regulate emotionally. How could that child ever learn that people can assist them or that they can request assistance if we ignore them when they’re distressed?
And you say in the book that, as they grow into adulthood, some on the spectrum actually use the same coping mechanisms that they used in childhood—like the woman who needed to jump on a trampoline—right?
Exactly. You are referring to Ros Blackburn, a woman with autism from England whom I have hosted and presented with, and from whom I have learned so much. Ros benefits greatly from what she refers to as “trampolining” on a regular basis. The word “awareness” is key here. Ros is very aware of what supports she needs to be successful in her life, despite the challenges related to her autism. I have been privileged to present workshops with five different friends on the spectrum over the past few years. I’ve learned that those who best meet the challenges that autism brings are able to share their experience of the difficulties and benefits of their autism: They have a high degree of self-awareness.
That’s why I recommend discussing a child’s diagnosis with them—some refer to this process as disclosure—as soon as they are able to develop some understanding, because you want to build awareness. Those who are least self-aware (even if they’re verbal and bright) may think they’re stupid or that people are out to get them, because they have little insight into how their autism affects their lives. So it’s important to help an individual understand what autism is and how it impacts their life—not just negatively, but positively as well. On the positive side, many people with autism now see their autism as an essential part of their identity—and they identify strongly with other people with autism and connect online or through organizations established and run by people with autism.

You can be the best teacher in the world, but it doesn’t mean you have the skills to support families. One thing I’ve learned over the years is that if a parent expresses anger or mistrust, the first question I should be asking is, “Why is this parent so stressed that they’re feeling such anger? What could I or our team do differently?”

So we shouldn’t just look at autism negatively?
Absolutely not, and this is another major theme of “Uniquely Human”—autism is not a tragedy. That’s also what autism advocacy organizations like the Autistic Self-Advocacy Network and GRASP are trying to get across to the general public. Autism may certainly present challenges, but we shouldn’t look at people with autism as tragic dysfunctional figures or believe that it’s nothing but devastating to a family.
And we are obligated to change society’s view of autism as a tragedy. If you’re an employer and all you’ve been exposed to is that people with autism are hopeless, have meltdowns all the time and can’t establish relationships, would you hire a person like that? No. And the truth of the matter is that many people on the spectrum have strong interests and abilities that can be capitalized on in the workplace and they can be extremely reliable and dependable. One friend of mine with autism, Stephen Shore, is a professor of special education and an accomplished author. Another friend, Michael John Carley, a musician and tireless advocate, founded GRASP, the largest advocacy organization in the world for adults with autism. Each has written three books about autism.
In the book you quote songwriter Paul Simon, saying there should be “tenderness beneath the honesty” in communicating with parents of children with autism. Given that communication sciences and disorders professionals are often in a position of counseling parents, how do you recommend they do this?
First, it is important to recognize that autism is a passionate affair. It raises very strong emotions for all involved. Sometimes anger, sometimes frustration, sometimes great joy. When parents experience strong emotions (just like all human beings), they may need to release the energy of those strong emotions. Sometimes that manifests as anger toward the school and toward service providers. (That’s one reason we have so much autism-related litigation.) Parents do not want professionals to “sugar-coat” autism, nor do they want to hear only about the negatives. They want balanced, honest and accurate information, but presented with compassion and understanding. And they also want to be respected and heard.
So we need to have better training in understanding family systems and in fostering positive relationships by understanding parental reactions and the impact of a disability on the family. You can be the best teacher in the world, but it doesn’t mean you have the skills to support families. One thing I’ve learned over the years is that if a parent expresses anger or mistrust, the first question I should be asking is, “Why is this parent so stressed that they’re feeling such anger? What could I or our team do differently?” Sometimes when anxious or angry parents redirect their energy, they become more actively engaged in their child’s program and are the best advocates for their child.
You talk in the book about parents who are terribly afraid that their child won’t be able to go to college or have a future. How do you advise a parent like that?
Every parent has dreams for their child—for some this includes college—and parents of children on the spectrum can be very stressed due to all the uncertainty they feel about the future. It is important to discuss and respect such concerns, but at the same time keep parents focused on the short term. It’s necessary for parents to have long-term dreams, but the parents I know who have best adapted to having a child with autism are those who say, “One step at a time.” The progress a child makes year by year gives us a better picture of what the future holds. I also like to share with parents that prognosis is not simply within a child. As society becomes more understanding and supportive, and creates more opportunities for people with disabilities, this helps the future look brighter as well.
Another important issue is that academic achievement is not the Promised Land. There are many kids with autism who may experience some academic success, but also may be extremely nervous, anxious and stressed. And that can make it challenging to hold down a job in the future. It doesn’t matter how bright you are if anxiety and lack of social skills get in the way. Research suggests that adults with autism do best in the workplace when they have good social communication skills, are emotionally well-regulated and have the strategies to deal with the challenges of a work situation.
How do we maximize those social skills opportunities for children on the spectrum?
In addition to social skills groups at school, I recommend getting kids involved in after-school clubs, especially related to areas of particular interest. It could be a Lego club. It could be a science club. It could be sports opportunities if the kid has the interest and ability. And there are a lot of effective targeted programs now on how to support kids’ development of friendships. It may not happen in schools to the extent that we would like to see it, but such programs are being provided in the community, such as in family support centers. Of course, kids in the neighborhood and in the extended family also provide great opportunities for development of friendships. The places we develop lifetime-lasting relationships are often in shared experiences and activities outside of school.
Instead of obsessions, you talk about “enthusiasms”—things that people with autism get highly focused on that sometimes could be perceived as unusual or even weird. How do we deal with an enthusiasm that might be negatively judged?
If an intense interest truly becomes problematic, in that it is stigmatizing in a social context or gets in the way of learning, we might try to expand the child’s interest in developmentally appropriate activities, and allow “a time and a place” for that student to focus on the interest. That needs to be a team decision with parents being centrally involved. But, more often than not, we can find ways to use enthusiasms creatively. In my book I give an example of a little boy who developed an enthusiasm for lawn-sprinkler heads. Most people would think there’s nothing you could do with that. Well, the father noticed his son could identify different brands of lawn sprinklers, and then he started buying lawn sprinkler heads on eBay. The two of them named them and painted faces on them, and the child enjoyed playing with them. It’s amazing the creativity some families demonstrate with their kids!
Here’s the point: We know it can be challenging to get the child focused and interested in topics or activities we may think are important. With enthusiasms, by definition, you already have something they’re interested in, so use that to maximize learning. As children get older, we can set up situations for enthusiasms. Obviously a child can’t talk about Legos all day at school, but if he joins a Lego club after school, it’s totally appropriate for him to talk about and play with Legos for two hours with his friends. Enthusiasms can also be key to employment when there is a good match between deep interests and employment possibilities.
But to best support people with autism, we need to recognize the importance of neurotypical people who “get it” (as you put it in the book). In other words, those people who have real understanding of how people on the spectrum think and attempt to cope with challenges. How do we try and get more people to “get it”?
It is important to listen to people with autism. You can have adults with autism speak to the school community about their lives. You can have parents come speak about their kids. You can have panels of children with autism present to the school what autism is like. The reactions of people with autism are really just human reactions—on the part of people who are more vulnerable, more sensitive, more easily confused, and who have more problems communicating their difficulties. That’s why I called the book “Uniquely Human.”
So we need to humanize people with autism, educate others and get people in power on board. For decades, professionals have dehumanized people with autism through the language we have used, such as “non-compliant,” “bizarre” and “deviant” behavior, and by focusing treatment efforts on eliminating such “autistic behavior.” We need to see and respect people with autism as uniquely human, educate others and move toward more compassionate approaches to education and treatment.
For example, a principal’s attitudes about autism trickles down through the whole culture of the school. So if a principal or teacher just sees these kids as behavior problems who need to be controlled and disciplined, that’s a difficult situation for those children and their parents. But if the principal and school staff create a community of understanding and support for these students and families, it will greatly influence the whole school “culture.” That’s what we need to do.
3 Comments
April 6, 2016
Margaret Jerger
Fantastic article.
Barry has such useful insights! Is his book available on Kindle?
April 6, 2016
Bridget Law
Yes, Uniquely Human is available on Kindle
Margaret, Barry Prizant's book "Uniquely Human" is downloadable to kindle at http://www.amazon.com/Uniquely-Human-Different-Seeing-Autism-ebook/dp/B00P42X22C/ref=sr_1_1?ie=UTF8&qid=1459956932&sr=8-1&keywords=uniquely+human+kindle.
April 7, 2016
Laura Custance
Thanks for this article!
I've shared this with a few parents and teachers-what a positive perspective. Will be reading his book.
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April 2016
Volume 21, Issue 4