updated May 19, 2023
As soon as I started reading Uniquely Human: A Different Way of Seeing Autism, I knew I had found answers to many of my questions and fears about autism.
This authoritative book was written by Barry M. Prizant, PhD, CCC-SLP, (www.barryprizant.com), among the world’s leading authorities on autism, and innovator of respectful, person- and family-centered approaches for individuals with autism and neurodevelopmental disabilities.
Part 1- understanding autism:
I have understood autism as a physician, which means I understood little. My training and experience as a family physician taught me the basics of autism, but little of the treatment. My few autistic patients went to developmental pediatricians, neurologists, psychiatrists, or psychologists so my involvement was limited to their physical needs.
From my limited exposure to autistic persons, I saw autism as a life altering, disabling , untreatable condition that disrupted families as they struggled to cope and manage.
Part 2- living with autism:
My autism understanding and experience changed when I began living with autism- that is, when my 3-year-old grandson was diagnosed as autistic.
At 2 years old he stopped using words. Other changes in his behavior concerned and alarmed me- lack of eye contact, withdrawal from me and his grandfather, and ignoring what was happening around him.
Our once happy, friendly baby grandson seemed to disappear.
I remember the day I sat at my computer searching the internet for “speech delay in toddlers”. The first, as well as the next several references, all returned the same words – “autism spectrum disorders.”
I cried the first of many tears imagining what the future held for our little family.
I started reading books, medical journal articles and autism focus websites, trying to find something hopeful and helpful to bring to my family’s autism journey. In Uniquely Human I found that help and hope.
About Dr. Prizant
According to his bio, Dr. Prizant is recognized internationally as a scholar in autism spectrum disorders and childhood disabilities.
He is an Adjunct Professor of Communication Disorders at University of Rhode Island.
Barry lives in Cranston, Rhode Island, with his wife, Dr. Elaine Meyer, a clinical psychologist and nurse, and Associate Professor in the Harvard Medical School.
Barry is a performing percussionist and has a specific interest in the impact of the arts on enhancing quality of life for individuals with disabilities and their families. He sits on the boards of two inclusive theatre companies co-founded by and including autistic actors.
In his book, Uniquely Human, Dr. Prizant approaches autism from a perspective gained from studying about and treating children with autism for 50 years.
He approaches autism more “how to” rather than “what or why”. He recommends working with the child’s strengths rather than trying to change or cure their weakness.
Much of the “treatment” of autism centers on controlling so-called autistic behaviors. He believes that these behaviors are the way autistic children cope with the challenges of “sensory dysregulation.” We should address the triggers of this dysregulation rather than trying to manipulate the behavior, he says.
“The central challenge of autism is a disability of trust”
- Trusting their body
- Trusting the world
- Trusting other people.”
“The best way to help them (autistic children) progress toward fulfilling meaningful lives is
- Find ways to engage them
- Build a sense of self
- Foster joyful experiences”
In his book, Dr. Prizant outlines ways to help autistic people. From my family’s experience, we have learned the importance of almost all of them. I list them here, along with some of my personal observations.
“Welcome them into your world”
Include them in family and social activities to whatever extent they can and will participate.
“Don’t label them – high-functioning vs low -functioning”
I was pleased to read that Dr. Prizant does not use those terms. As he says,
“People are infinitely complex and development is multidimensional and cannot be reduced to such a simple dichotomy. “
He goes on to call these labels “terribly inaccurate and misleading ” and that using them is “disrespectful.” The label low-functioning can become a self-fulfilling prophesy.
“Instead of focusing on vague and imprecise labels, it’s better to focus on the child’s relative strengths and challenges, and to identify the most beneficial supports. “
He discusses this in more detail in this article from 2012.
A False (Harmful?) Dichotomy
“Engage them; try to communicate”
Not all autistic people are verbal; but they all communicate in some way. We just need to understand how and work with that
“Treat respectfully, with empathy and sensitivity”
“Meltdowns are a common occurrence with autism but are not “temper tantrums”. They usually reflect a need or want that isn’t being met, or a situation that is overwhelming or too stimulating. We try to adjust the circumstances to his feelings, not force him into something that is uncomfortable for him.
Sometimes you just need to laugh.
“Offer to help but no unsolicited advice or criticism”
I ask a lot of questions. Whenever I meet someone who has an autistic child or relative, a special education teacher or therapist, I try to learn something from them. Friends occasionally offer advice about therapy or some facility that I often already know about. As long as it is offered non-judgmentally I appreciate their interest. So far I’ve never had anyone overtly criticize.
“Be positive; use tenderness with your honesty.”
“Celebrate with us”
Don’t be afraid to ask how things are going, as long as you don’t mind sometimes hearing the bad as well as the good.
“Trust- be dependable, clear and concrete”
I am happy to say my grandson is doing well. He benefits from speech and occupational therapy, special education in the public school, and the prayers and support from our friends and family, especially his parents and sister.
I see him and every other person with autism as “Uniquely Human”; knowing and loving him has changed my life in ways I could not have imagined and would not want to miss.
THE SPARK- A Mother’s Story of Nurturing, Genius, and Autism
listen to an Audible sample at this link
Another book that encouraged me is THE SPARK by Kristine Barnett. When her son Jake was diagnosed with autism at 2 years old, doctors told her he would never attend school for “normal’ children. Undeterred, she taught him herself, building on his strengths. By 16, he was attending college- and helping to teach classes in quantum physics.
I don’t know if Mrs. Barnett knew of Dr. Prizant’s methods, but it certainly sounds as if she used them. Or maybe she just followed her motherly instincts. Here’s how she says it in the introduction.
“This book is the story of how we got from there to here, the story of a mother’s journey with her remarkable son…it is about the power of hope and the dazzling possibilities that can occur when we keep our minds open and learn how to tap the true potential that lies within every child. “
I highly recommend this book to anyone who needs or wants to know more about autism.
an update, May 2023
Years of speech therapy released my grandson’s inner voice. Today he is entering 6th grade, is a video game master, and flourishing. So is his family.
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