Uniquely Human (Part 1 of 2)
Uniquely Human: A Different Way of Seeing Autism
By Dr. Barry Prizant
Published by Simon & Shuster
When parents first hear their child has autism, they may experience grief, confusion, or fear. These emotions are accompanied by questions – about who their child will be, and how to parent them in a way that helps them be successful. What is often not helpful for parents at this time is the prevailing view of autism – a list of behaviours to be managed, and an emphasis on how this child is different from other children.
As a consultant who works with both families and schools, Dr. Prizant has seen the confusion and fear this approach causes countless times. His job, he states in his introduction has become to “help [parents] transform their desperation into hope, to replace anxiety with knowledge, to turn self-doubt into confidence, and to help them see as possible what they thought was impossible.” The first step? To view autism differently, not as an illness or problem to be fixed, but as a different way of being human. In shifting this perspective we get to know our children once again, and are able to support them to be who they are.
Part One – Understanding Autism
The first section of this book (which will be reviewed in this article) focuses on helping the outsider, the neurotypical observer, begin to understand autism. The first two chapters provide key strategies to achieve this goal – asking why, and listening. Chapters 3-6 focus more on specific traits that many individuals with autism share, and on understanding those traits through the right lens.
Chapters 1-2: Asking Why and Listening
The key idea that Dr. Prizant presents in these chapters is a simple one – people with autism are people. They are individuals to understand, rather than problems to be solved. This truth extends to all aspects of the autistic individual – including both their “behaviours” and their spoken language.
Dr. Prizant states that human behaviour always occurs in reaction to something in the environment. Dysregulation occurs when our environment becomes uncomfortable, and our behaviours are what we use to calm ourselves down and cope with the situation. The same is true for an autistic individual – and if the behaviours seem more extreme, then it seems logical to surmise that perhaps the dyregulation they are experiencing is more intense as well. This is where asking why becomes a key strategy. Rather than focusing on a behaviour, the goal changes to understanding what the behaviour is a response to, and then helping the child manage that stressor in the most positive ways possible.
The approach to verbal communication, and especially to echolalia, is the same. Autistic humans, like all humans, use the tools they have to communicate. Recognizing this fact, and allowing it to guide the way we listen to echolalia is hugely important. In this framework we begin to understand the ideas being communicated through children’s scripts, rather than dismissing them as simply repetition. Statements like “I don’t want a sliver” become code for “I’m worried, or upset” and children become more and more able to express parts of how they’re feeling.
Chapters 3-6 – Understanding Specific Traits
In this section, Dr. Prizant focuses on reframing the commonly held perspectives on specific traits that many autistic individuals share.
In the case of “Enthusiasms”, Dr. Prizant discusses a positive approach to what many view as unhealthy fixations. Many kids with autism develop incredibly strong interests. It may be cars, trains, lampposts, time, or anything else you can think of. Rather than always redirecting the child from these interests, Dr. Prizant suggests developing the interest with the child – visiting museums, researching the item, collecting the item, etc. In some cases this approach has led to surprising results – a skill development that leads to career options and more – but in all cases it allows your child to feel heard and validated, and builds their relationship with you.
In “Trust, Fear and Control”, Dr. Prizant describes autism as a “disability of trust”. Because of their neurology, he proposes, it is difficult for autistic individuals to trust their bodies, the world around them, and other people. When these difficulties and the fear they contribute to are recognized for what they are, strategies can be developed to help a child conquer or manage them in whatever way is appropriate for the situation. To help build trust, he gives the following suggestions:
- Acknowledge attempts to communicate
- Practice shared self-control to build self-determination
- Acknowledge the individual’s emotional state
- Be dependable, reliable, and clear
- Celebrate successes
In “Emotional Memories” Dr. Prizant discusses both the positive and negative side of the powerful memories of an autistic individual. Many parents of verbal children with autism will have noticed this memory – maybe for dates, for facts about a key interest, or for something else. In addition to this, autistic individuals, like all people, have emotional memories – memories that have been attached to a specific feeling. The biggest challenge with this, of course, is when the feelings attached to the memory are negative. Combine that challenge with difficulty communicating what is wrong and emotional memories can become the cause of what seems like inexplicable reactions. Dr. Prizant offers the following points to look for when determining whether emotional memories are an issue in specific situations:
- Strong behaviour reaction that doesn’t seem related to something observable
- Consistent expressions of fear or anxiety related to a particular person, place or activity.
- Echolalia related to the person, place or activity.
If emotional memories are pinpointed as a concern, the first step is to acknowledge and validate the experience, as well as providing supports for emotional regulation. From there, strategies can include avoiding specific situations, providing as much control as possible, or building positive emotional memories to replace negative ones.
In the final chapter, “Social Understanding”, Dr. Prizant discusses the challenges that autistic individuals face in social intuition. Generally, he explains, people learn social rules through observing and absorbing what happens around us, along with periodic coaching. He describes the process people with autism use to learn these things as different – more akin to learning a second language as an adult than growing up with a language from childhood. This of course makes fluency and comfort in the “language” more difficult to achieve. How to help? Social rules can be somewhat useful, but they come with limitations and exceptions. Additional strategies are to be as direct as possible in communication with autistic people, to recognize the stress and difficulty challenges in communication may cause and help manage those feelings, to label emotions for the child in the moment they are experiencing them. Throughout all of these strategies, the goal should be to help the child develop social understanding rather than simply focusing on social skills.
It’s clear from this review that Uniquely Human has much to say, and it says those things very well. Wound through the above key points are countless examples and anecdotes that highlight the points that Dr. Prizant is making. As a result, the book is an excellent resource for parents that are new on this journey or wanting to understand their child’s challenges. In addition to being a good resource, however, this book is a genuinely enjoyable read. There are moments of laughter as well as moments that hit your heart, combining to create a feeling of hope and encouragement about the journey of parenting a child with autism. This pattern continues in the second half of the book, which will be reviewed in a later blog post.
Dr. Prizant’s book is available through in local and online bookstores, and may also be available through your local library.