Why I observe Autism Awareness Day

Every year  people around the world observe April 2 as World Autism Awareness Day (WAAD) and April as World Autism Awareness Month. What’s it all about? Why observe such a day?

“Autism is a brain disorder that often makes it hard to communicate with and relate to others. With autism, the different areas of the brain fail to work together.”

 

As a physician, I am  professionally aware of  the symptoms of  autism. As the grandmother of a child with autism, I have become intimately and personally aware of what it means to experience life with autism.  A few months ago I reviewed two books  that gave me much needed information  and hope about autism. I believe they will help other autism families and anyone who wants to know more about this condition.

So in observance of World Autism Day I am repeating that post for you now.

 

Uniquely Human: A Different Way of Seeing Autism 

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 ,more importantly ,fears about autism. The structure of the book parallels my journey with autism.

 

Part 1- understanding autism:

For the majority of my adult life 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 and of the condition. 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 was not using words, even though he had been just a few months before. Other changes in his behavior concerned and alarmed me- lack of eye contact, withdrawing from me and his grandfather, 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 web sites, trying to find something hopeful and helpful to bring to my family’s autism journey. In Uniquely Human I found that help and hope.

 

 

 

 

 

 

Uniquely Human was written by Barry Prizant, Ph.D.

Uniquely Human was published by Simon and Schuster.

According to his official Facebook page, Dr. Prizant is recognized internationally as a scholar in autism spectrum disorders and childhood disabilities.

He is an Adjunct Professor, Brown University, & Director, Childhood Communication Services.

His many honors include

2014 Honors of the American Speech-Language-Hearing Association,

2005 Princeton University-Eden Career Award in autism

2013 Divine Neurotypical Award of GRASP.

 

He is married to Dr. Elaine Meyer, an Associate Professor and Director, Center for Professionalism and Ethical Practice in the Harvard Medical School and father of teenage son Noah, a student at Washington University in St. Louis.

In his spare time, Barry plays drums in a rock/blues band, enjoys hiking, fishing and outdoor activities, and is an avid collector of Inuit, Native American and other indigenous art, and antiques.

In his book, Uniquely Human, Dr. Prizant approaches autism from a perspective gained from studying about and treating children with autism for 40 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’s 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.

He concludes,

“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

 

 

 

“Give choices”

“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.

 

 

 

 

 

“Humor”

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 of  developmentally challenged persons , I try to learn something from them. Friends occasionally offer  advice about a 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 criticise.

“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

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.