Uniquely Human: A Different Way of Seeing Autism

Karsen: From the Parents Club, I’m Karsen Kolnicki. This is your briefing.

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Karsen: Today, we’re discussing Uniquely Human. Written by Dr. Barry M. Prizant, PhD, with Tom Fields-Meyer.

In this title, Dr. Prizant suggests a shift in understanding autism and how it affects the people who live with it. Instead of classifying "autistic" behaviors as signs of pathology, he sees them as strategies to cope with a world that feels chaotic and overwhelming.

Karsen: Vincent Phamvan on the key takeaways [pause] and what you need to know.

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Karsen: Vincent, as we know, people who are classified on the Autism spectrum have a different way of going about life. One generalization often associated with people with Autism is that their behavior can be difficult to predict. What do the authors say as to why this is?

Vincent: The authors say that autistic people have a difficult time regulating their emotions, which means that all of their feelings tend to be more extreme.

Consider feelings like confusion, fear or distress; while everybody experiences these feelings sometimes, most people learn how to handle them – to some extent at least – early on in life.

However, for people on the autism spectrum, it’s more challenging to filter stimulation, which leaves them vulnerable and sensitive to all that goes on around them.

Karsen: And the authors refer to the inability to to deal with such feelings as emotional dysregulation, right?

Vincent: Yes, and emotional dysregulation is mainly triggered by sudden environmental changes, uncertainty or situations that engage an autistic person’s already heightened senses.

For example, loud sounds or spaces that are too bright. When such things trigger an autistic person’s emotional dysregulation, the key to helping them is to root out the underlying cause.

Karsen: Yes, and the authors also highlight that what you definitely shouldn’t do is dismiss or try to “fix” their behavior.

Vincent: Exactly, when a person with autism reacts in a sudden, unexpected way, say by falling to the floor or clapping their hands repeatedly, it’s not an intentional act of disobedience, but rather an attempt to calm themselves down after experiencing something that caused overwhelming nervousness.

The authors give an example of a student with autism, Lucy, who was being aggressive with her teachers. The authors identified the problem, when playing games, her teachers would change the games repeatedly and change the rules without warming.

Karsen: So since autistic people need routines to give them a sense of reliability, maintaining a controlled environment is one of their primary coping strategies. Meaning Lucy didn’t intend to attack anyone; she was simply in a state of profound confusion and panic.

Vincent: Exactly. In addition to helping identify the underlying factors, listening to those with autism is a vital step in supporting them.

Karsen: When most people are distressed, they react positively to the acknowledgment and validation of those close to them – and autistic people are no exception. How does listening apply to these scenarios?

Vincent: So, to support those with autism, we must listen and respond to their needs instead of expecting them to act the way we want.

The authors give an example using Jesse, a young boy with troublesome behavior. Prior schools had attempted to address his conduct through rigid training that deprived him of space for communication. This was an especially poor route to go with Jesse, as his aggression was triggered by confusion, fear and an inability to express himself.

Since Jesse is non-verbal, meaning he couldn’t talk, the author along with therapists and teachers at Jesse’s new school worked to provide Jesse with the tools he needed to express himself. They also helped make his days more predictable with the help of a schedule.

They came up with a visual schedule book so Jesse could indicate which activity he wanted to partake in. As the staff began understanding his needs and offering him a sense of control, Jesse, who had once been horribly isolated and resistant, became more comfortable, communicative and cheerful.

Karsen: Wow, that just goes to show the importance of listening carefully to those on the spectrum and looking for clues about what they’re trying to communicate. What do the authors say about social cues?

Vincent: People on the spectrum struggle with subtle social cues, so direct communication is essential. For example, if you’re at a party and someone brings out cake, you might let them know you want a piece by saying, “that looks delicious!”

But for a person with autism, offering such a subtle hint wouldn’t work very well. They would be much more comfortable saying, “please give me a piece of cake!” It’s more difficult for people with autism to read, understand or learn social cues.

Karsen: What about other situations, like new environments?

Vincent: Imagine entering an unfamiliar place, such as a restaurant with a very specific ordering system. A person without autism would observe the other customers and their social behaviors, and soon understand how the place works. But for a person on the spectrum, such an instinct doesn’t exist.

Karsen: For a person with autism, this experience would be extremely confusing because it’s just too difficult to pick up the subtle, intangible cues of society. How should you use this information to communicate effectively with a person with autism?

Vincent: Yes that’s exactly what the authors say. It’s important to avoid making assumptions when interacting with an autistic person and a good place to start is by eliminating any type of communication that isn’t obvious, like irony or idioms.

Karsen: Oh yes, the authors use calling 911 as an example of this, right?

Vincent: Yes, the example was of an autistic child whose parents taught him to dial 911 in case something very bad happened. The following day, he dialed the number after his mother refused to serve him dessert. In such a case, it could have helped to list out exactly the types of emergencies for which it would be appropriate to call 911, like a fire, car accident or grave injury.

Karsen: So being clear in your communication is key. Another way to support people with autism is by limiting unpredictability and putting them in control.

Vincent: Right, everyone gets frustrated when something fails to meet their expectations. But for people on the spectrum, these frustrations can grow out of proportion.

Karsen: That makes sense, what’s the result of this?

Vincent: When confronted with unpredictability, autistic people feel a deep sense of betrayal that makes it difficult for them to trust the world at all. As a result, being able to predict the behavior of others and their environment is one of the most comforting things a person with autism can experience.

Karsen: For example, an autistic person might have a complete meltdown because his DVD player isn’t working properly. His panic is a result of not understanding why the machine, which worked perfectly just the day before, now won’t turn on.

Vincent: Precisely. To help autistic children overcome such fears, you can forge trusting bonds and try out innovative ways of collaborating. Their fear and anxiety of the unknown pushes them to control conversations or the way people behave, which makes collaboration fundamental. So avoid pushing them into compliance and instead use trust to help them handle their fears.

Karsen: Next the authors discuss how encouraging someone with autism to build on their enthusiasm can have incredible outcomes, what does this mean?

Vincent: Most autistic people develop deep interests and passions for very specific things because doing so helps them remain focused and regulated such as getting excited when going through the car wash while other kids get that same enthusiasm at an amusement park.

Karsen: The authors note that you don’t have to be a trained professional to connect with people on the spectrum, some people simply have an intuitive ability to connect with people on the spectrum and can often achieve much better results than professionals with impressive resumes or years of training.

Vincent: Yes, and there are 4 traits that allow people to have this effortless connection. First they’re all strongly empathetic. They work to understand how the autistic person views the world and make sense of their behavior. They ask “why?” without judgment and are focused on human behavior.

Karsen: It’s always great to be empathetic. What is the second trait?

Vincent: Second, they’re all sensitive, which means that they can readily pick up on the little signs and subtleties that autistic people use to communicate dysregulation, like a tensing up of the body.

Karsen: I could see this type of person being comforting in changing situations. What’s the third trait?

Vincent: Third, they split control, meaning they don’t attempt to govern the autistic person. Instead, they foster an environment in which they’re available for assistance while offering a certain amount of independence.

Karsen: And lastly, what’s the fourth?

Vincent: Lastly, they all have a sense of humor. It’s not always easy supporting someone with autism and people who get it don’t overreact to negative experiences. Instead, they maintain their good humor and a positive outlook, which makes all the difference.

Karsen: We should all aspire to have these traits.

Vincent: Exactly! It would make it easier to communicate with all kinds of people.

Karsen: It sounds like the key takeaway from this book is that there's a difference in understanding how an austistic person manages their world as a way to support them versus trying to conform them to how others navigate their world.

By making an effort to understand how autism affects people, we can see that their behavior is not something to be eliminated or controlled. Rather, through empathy and support from people around them, those on the autism spectrum can develop their unique abilities and learn to communicate effectively.

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Karsen: That’s it for your briefing. I’m Karsen Kolnicki. See you next time.

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