Inside: Barry M. Prizant, Ph.D., CCC-SLP, specializes in common misconceptions and misunderstandings about autism, how parents can best support their kids, what true understanding looks like, the “it factor” some people have, and more.
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When he was in second grade, I received a call from my son’s school that still rings in my ears:
“Take him, and don’t return until you know what’s wrong with him.”
(This was before his autism diagnosis.)
When I came to pick him up after another meltdown they “couldn’t control,” he was under a table in a glass room, surrounded by what felt like every single adult in the building.
It felt as if he had become a spectacle for all to gawk at, with their accusations flying:
Yet, all I could see was a terrified child who had given up all hope of being seen, heard, or understood. My heart was breaking.
That incident became the catalyst for change.
I knew he deserved better, and I would not accept this reality for him anymore.
I took him out of the school that day and never looked back…
That day was the spark that ignited Calm the Chaos… and the rest is history!
Over the years, as I’ve worked with parents of autistic kids and met many incredible autistic individuals, one truth consistently surfaced: The world often doesn’t see these remarkable individuals in the way that I do.
I’ve always wished that others, especially within our education system, would perceive these humans in their true light.
Now, I’m not saying there are no outstanding experts and amazing people working with neurodivergent children. But I wish it was the norm rather than what feels like the exception.
One of my greatest hopes is that future parents won’t have to share heart-wrenching tales of their autistic children being as gravely misunderstood as mine was.
Who is Barry Prizant?
And Barry Brizant is proof that things are changing and that there is hope.
Barry M. Prizant, Ph.D., CCC-SLP, is an international consultant and researcher currently serving as the Director of Childhood Communication Services and an Adjunct Professor of Communicative Disorders at the University of Rhode Island.
He is the author of five books, with “Uniquely Human: A Different Way of Seeing Autism” being notably published in 26 languages. Additionally, he has written more than 140 articles and given close to 1000 presentations at major universities across the US and in over 25 countries.
Dr. Barry Prizant also co-produces and hosts the Uniquely Human podcast with his friend, Dave Finch, an autistic audio engineer and New York Times best-selling author.
He started his journey as a teenager helping kids with disabilities at summer camps. Those early years gave him a peek into the kids of miscommunications and misunderstandings these families face daily.
Today, he is recognized as among the world’s leading scholars on autism and neurodiversity and as an innovator of respectful, person- and family-centered approaches in supporting neurodivergent individuals.
Throughout his 50-year career, he chose to step outside the box and spend time with autistic children and their families far beyond clinics and classrooms.
This in-depth approach gave him a unique perspective on the autism experience, not only of those who are autistic but also of their families.
Does having someone look at the whole picture for your family sound like the approach you’d like for your superkids?
Imagine if professionals, caregivers, and parents could see autism through a fresh lens.
Sometimes, They Don’t Know Any Better
I absolutely love that Dr. Barry’s ideas and his way of thinking about autism (and all that goes along with it) are in alignment with the Calm the Chaos way.
Although I haven’t been trained in psychology, neurology, defectology, or other branches of medicine, I based my framework and roadmap (explained in my book) on out-of-the-box, science-backed facts that I have personally applied and seen in action.
That’s why I always say that you’re the expert on your kids.
Because you are the person who spends the most time with them. If something feels odd to you and doesn’t work for your unique kids, trust your gut and don’t follow that advice, no matter what an expert says.
I’m not suggesting that doctors, school principals, or therapists are being intentionally harmful… but it is definitely possible that they’re relying on outdated methods.
They might not know better.
On multiple occasions, experts have advised us to try strategies that, when implemented, cause more harm than good.
One of the most traumatic experiences in learning to navigate my son’s meltdowns happened because I followed advice that went against every fiber of my being.
But I was desperate… and trying to trust the “experts” who knew what was “best”…
So, I did something that will haunt me for the rest of my life.
We isolated our son in his room during a meltdown – the experts said he needed to “calm down by himself.”
And when the room finally went quiet after hysterical crying, kicking, and thrashing…
I opened the door to find my boy standing in front of an open second-story window with a plastic bag over his head.
His plea, “I just want it to stop! I don’t want to be mean…” was all it took for me to never second-guess my gut again.
I knew there had to be a better way for autistic and neurodivergent families.
And Dr. Barry has dedicated his life’s work to offer just that.
Insights to Autism: Stimming, Non-Speaking and Non-Verbal, and Meltdowns
Dr. Barry specializes in shifting common misconceptions about autism like stimming, non-speaking individuals, and what causes meltdowns.
Consider the often misunderstood concept of “self-stims” and “stimming” –
Traditionally, these behaviors look like
Often, stims were thought of as typical autism signs that should be fixed, stopped, or removed.
The flawed idea was – to get rid of these behaviors, and you’re addressing (ie: fixing) autism. However, this viewpoint couldn’t be further from the truth.
As Dr. Barry says, research began to challenge this idea over two decades ago.
It is now becoming more widely accepted that these actions are actually ways for individuals to calm anxiety or let out extra energy.
And the autistic community agrees!
Even professionals who once tried to stop these behaviors now recognize how calming and helpful they can be.
And I’m truly thrilled that we’re seeing a real change in understanding… it’s a step in the right direction.
(If you want to hear more details about this topic, tune in for the full interview with Dr. Barry on YouTube.)
Non-Verbal and Non-Speaking ≠ Lack of Intelligence
Another common misconception revolves around non-speaking or minimally speaking individuals.
Traditionally, society measures intelligence by one’s ability to express thoughts, whether by talking or writing.
However, many autistic individuals can’t speak due to challenges like motor speech or neuromotor disorders. But they are still smart.
Dr. Barry mentions Elizabeth Bonker, the top student at Rollins College, whom he interviewed on his podcast. Her success as a non-verbal person challenges the old idea that being smart is only shown through talking.
Today, many use tools like letter boards, iPads, or helpful apps like Proloquo2Go to communicate. There are also groups that help non-speaking people (you can find their websites at the end of this post).
However, it’s important to know that autism has different aspects, and not every non-speaking person has hidden skills or feels trapped.
We need to listen to non-speaking people as carefully as we do to those who can talk.
Communication preferences and abilities should not limit anyone from being able to share what they know and feel.
Another example of the work being done to shift this misconception, Dr. Barry also recommends a beautiful movie about Jordyn Zimmerman called “It’s Not About Me.” Once seen as very challenging, Jordyn found her voice through a special way of talking. She later graduated from Boston College and now works with President Biden on issues for disabled people.
Stories like Jordyn’s show the amazing things people can do when given the chance.
Meltdowns – A Form of Communication
As Dr. Barry explains, understanding meltdowns from the viewpoint of those who experience them is vital.
When we call behaviors “problematic” or “challenging,” we often miss what the person is truly feeling or trying to communicate. These actions aren’t meant to be harmful or aggressive; they’re ways of asking us to understand them.
As all parents are painfully aware, their autistic kids are often misunderstood.
Lashing out is often an act of desperation. They might be saying, “This is too much for me. I need a break.”
For some, what seems like “aggression” is really their way of protecting themselves or telling us something important.
Instead of seeing such behavior as disrespectful, we should look for the reasons causing it.
Often, there might be health issues that cause pain or discomfort.
For example, many autistic individuals have stomach problems caused by allergies to certain foods.
If you see a child slamming their stomach into their chair, consider that it might be hurting.
If you see a child hitting themselves on the head, consider that it might be a severe headache.
Similarly, if someone doesn’t like being touched or is bothered by loud noises, their reaction might seem aggressive, but their response is a natural reaction to their need for something different.
You’ll have to be paying attention to catch these things.
You’ll have to be curious rather than making snap judgments and assumptions.
Our job as parents, family members, teachers, colleagues, and even neighbors is to notice the little signs — the small clues that someone might be feeling stressed or uncomfortable. If we see these signs early, we can avoid meltdowns.
Understanding these behaviors isn’t easy, but we need to be kind, empathetic, patient, and try our best to understand how each person sees and feels about the world.
We Have Your Back
These are just a few of the golden nuggets Dr. Barry shared in the interview. If you were nodding your head reading this post, tune in for the full episode and enjoy the insights of this amazing expert.
Not only will he help you better understand your autistic child, but he’ll also show that on this parenting journey, there is a vast community full of resources that has your back when you feel like drowning in everyday challenges. (Check out the additional sources at the end of the post.)
And no matter how hard sometimes it might feel,
You’ve got this!
Dayna
Calm the Chaos Parenting is a podcast offering parents practical tools and strategies to navigate the challenges of raising strong-willed, highly sensitive, and neurodivergent children.
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Get your copy of Barry Prizant’s book Uniquely Human: A Different Way of Seeing Autism.
Check out Barry Prizant’s comprehensive educational approach being implemented in more than a dozen countries – The SCERTS Model
Check out the websites of these organizations that support non-speaking individuals:
– Order your copy of Calm The Chaos Book
Connect with me on social media:
This content was originally published here.