Most viewed post #2- Why I have “A Different Way of Seeing Autism”- a book review

Autism- a personal and professional perspective #adifferentwayofseeingautism#Bprizant1

I write little about my personal life on this blog, but this post is an exception. I  write book reviews frequently, and this post is one of those.

The book is important to me for both personal and professional reasons, so it seemed a good choice to write about.  I am pleased that it made the top 5 this year.

Autism spectrum disorder (ASD) is a neurological and developmental disorder that begins early in childhood and lasts throughout a person’s life. It affects how a person acts and interacts with others, communicates, and learns. It includes what used to be known as Asperger syndrome and pervasive developmental disorders.  Due to changes in diagnostic criteria, lack of definitive tests, overlapping symptoms, and missed diagnoses it’s hard to say what the most common developmental disorder is, but autism likely falls within the top 5.

In this post I explained why I have “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.

a banner reading "aok Walk for Autism

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.

a cute baby boy
A happy, smiling, social baby boy, before things changed

 

 

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.

 

 

toddler
At age 2 years, we all sensed something had changed. Evaluations and therapy soon followed.

 

 

 

 

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- A DIFFERENT WAY OF SEEING AUTISM
UNIQUELY HUMAN- A DIFFERENT WAY OF SEEING AUTISM

 

 

 

 

 

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.

little boy walking with mother, holding hands
participating in our community Walk for Autism event

 

 

 

“Welcome them  into your world”

Include them in family and social activities to whatever extent they can and will participate.

 

little boy with Easter basket full of eggs
Success at an Easter egg hunt.

 

 

 

 

 

“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

2016-09-28-18-50-18
exercising with the video game

 

 

 

“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.

 

little boy wearing sunglasses
Check out those shades; being silly helps sometimes.

 

 

 

 

“Humor”

Sometimes you just need to laugh.

 

children in Halloween masks
searching for the perfect Halloween mask with his older sister

 

 

 

“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.”

 

little boy with a big camera
eager to try new things

 

 

 

 

 

“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.

 

girl and boy in a corn field
exploring the corn maze with sister

 

 

 

 

“Trust- be dependable, clear and concrete”

man and boy on the floor
Rough-housing with grandpa

 

 

 

 

 

 

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.

Learn What motivated Dr. Prizant to write Uniquely Human

in this interview by autism specialist Becca Lory

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.

 

 

 

Please share with your friends and join me  for the year’s  most viewed post. 

Follow Watercress Words as we explore the HEART of HEALTH. 

Thanks for being here with me. I appreciate your interest. 

Dr.Aletha 

 

 

Most viewed post #3- To Joey, With Love- a movie review

The 3rd most viewed post on my blog this year, about a love story #ToJoeyWithLove#RoryFeek

I’m pleased this post was so popular because it is such a touching story of love and commitment, something we need to hear more about. My thanks to Rory Feek for continuing to share his journey with his words and his music.

To Joey, With Love

A Story of Life, Love, and Hope That Never Dies

90 minutes , with Spanish and English subtitles for the hearing impaired

Provident Films 2016

(affiliate links used in this post)

To Joey, with Love is the intimate, authentic, and transparent story of a couple who met head on two of life’s most difficult challenges- a special needs child and a terminal illness. Rory produced the film because he believed their story needed to be remembered, documented and shared.

To Joey, With Love- A Story of LIfe, Love and Hope That Never Dies
To Joey, With Love- A Story of LIfe, Love and Hope That Never Dies The story of Joey and Rory Feek

Joey and Rory Feek had a successful career as a country music singing duo and a happy 12 year marriage when they decided to take a year off to have a baby. For many years Joey had been afraid to have a baby,fearing she would not be a good mother.

Her pregnancy progressed normally and culminated in a planned at home birth attended by a midwife.Sudden complications forced a trip to a hospital where both mother and baby were stabilized and in no immediate danger.

Unfortunately, the doctors and nurses told Joey and Rory that their much anticipated child had a problem- their new baby girl had Trisomy 21, also known as Down syndrome.

Indie’s challenge- Down Syndrome

People with Down syndrome have an increased risk for certain medical conditions-

  • congenital heart defects,
  • respiratory and hearing problems,
  • Alzheimer’s disease,
  • childhood leukemia and
  • thyroid conditions.

Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Here are more  Down Syndrome Facts

Trisomy 21 chromosomes
Children with Down Syndrome have an extra chromosome, number 21 (see arrow) Diagram courtesy of Dr. Clark Heath of the CDC

Joey’s challenge-Cervical cancer

A few months after their baby Indiana’s birth, Joey  faced the recurrence of cervical cancer diagnosed and treated years before. Despite more surgery, radiation and chemo the cancer persisted until further treatments were futile and and likely to cause more suffering. Joey decided to leave their Nashville farm,her horses, chickens and gardens, to move home to Indiana to spend her remaining time with her extended family.

Faced with the persistence of the cancer

“Joey decided to come home-not to die, but to live.”

Cervical cancer is cancer that starts in the cervix, the narrow opening into the uterus from the vagina. More than 12,000 women in the United States will be diagnosed with cervical cancer each year, and more than 4,000 of women will die.

Cervical cancer is the second most common type of cancer for women worldwide, but because it develops over time, it is also one of the most preventable types of cancer since the widespread use of the Pap test to detect cervical abnormalities leads to early treatment.

Cancer of the cervix tends to occur during midlife. Half of the women diagnosed with the disease are between 35 and 55 years of age. It rarely affects women under age 20, and approximately 20 percent of diagnoses are women older than 65. Women should ask their doctor how often and for how long they should continue having Pap smears.

The National Cervical Cancer Coalition provides this overview of cervical cancer treatment. overview of cervical cancer treatment

Get the Inside Knowledge about gynecologic cancer.

In 2014 Rory Feek started sharing their lives in a blog and on Facebook which is where I first learned about them. In his “About” ,  Rory writes

“My name is Rory. I want to live a great story. I want to be a better man. I film. I write. I show up. God does the rest…”

Rory kept writing. Eventually, he shared the entire story on the blog, which also lead to his book by the same name, and eventually the movie.

This LIfe I LIve by Rory Feek
This LIfe I Live One man’s extraordinary, ordinary life and THE WOMAN WHO CHANGED IT FOREVER

This Life I Live: One Man’s Extraordinary, Ordinary Life, and the Woman Who Changed It Forever 

“In This Life I Live, Rory Feek helps us not only to connect more fully to his and Joey’s story but also to our own journeys. He shows what can happen when we are fully open in life’s key moments, whether when meeting our life companion or tackling an unexpected tragedy. He also gives never-before-revealed details on their life together and what he calls “the long goodbye,” the blessing of being able to know that life is going to end and taking advantage of it. Rory shows how we are all actually there already and how we can learn to live that way every day.” (Amazon review)

Here is a link to a book excerpt-

RORY FEEK OPENS UP ABOUT HOW HE MET AND

FELL IN LOVE WITH HIS LATE WIFE, JOEY

And now as a single dad, raising their daughter Indie alone, Rory continues to blog at This Life I Live.

Although I cried throughout ,  I’m glad I watched To Joey, With Love, and recommend it to you, as well as Rory’s book. Follow him at his blog and on Facebook.

 

Movie, book, and music also available at
Barnes & Noble – Free Shipping of $25+

 

Please share with your friends and join me  for the year’s 2nd  most viewed post

Follow Watercress Words as we explore the HEART of HEALTH. 

 

Thanks for your time and interest.

Dr. Aletha 

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