autism – Page 4 – watercress words by Dr Aletha

A Different Way of Seeing Autism- a book review

“Uniquely Human: A Different Way of Seeing Autism” by Barry M. Prizant, PhD, CCC-SLP offers insights into understanding and living with autism. The book promotes a person-centered approach, emphasizing the importance of engaging, building self-esteem, and fostering joyful experiences for individuals with autism. Dr. Prizant advocates for working with their strengths rather than focusing on weaknesses.

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.

UNIQUELY HUMAN- A DIFFERENT WAY OF SEEING AUTISM, a book by Barry Prizant, Ph.D. — *UNIQUELY HUMAN- A DIFFERENT WAY OF SEEING AUTISM*

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 the 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” 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 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 calls 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. “
Dr. Prizant

He discusses this in more detail in this article from 2012.

A False (Harmful?) Dichotomy

asq21_high_low_functioning Download

“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, 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.”

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.

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.

THE SPARK, a book cover; a mother's story of nurturing, genius, and autism — ***THE SPARK***

“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, March 2024

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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Reconsidering vaccination- a book review

So, I was first surprised, then puzzled, then alarmed at the number of parents who reject vaccination for their children, and adults who decline immunizations for themselves. Some people now fear the vaccines more than the diseases they prevent and we physicians must consider this to help people stay well instead of treating them when sick.

This information is current as of the date of original publication or update. It may have changed by the time you read this. I invite you to fact-check what you read here.

This information is not intended for diagnosis or treatment. Before making health decisions, discuss with your physician or other qualified healthcare provider to decide what is right for you.

In 1961, my mother and I went to my school on a Sunday afternoon to receive the newly released oral polio vaccine. She along with other parents eagerly sought a way to prevent a dreaded disease that had the potential to cripple or even kill their children.

In medical school I learned about diphtheria, a painful throat infection due to a bacteria, Corynebacterium diphtheriae. Once a common cause of severe illness and death, a vaccine had rendered it rare. I saw no cases of diphtheria in medical school, nor have I since.

As a young physician I welcomed the introduction of the H.Flu vaccine (Haemophilus influenzae bacteria, not the virus) in 1985. At that time, any infant or toddler with a fever was a potential victim of meningitis due to H.Flu, which could be deadly or leave the child with neurological damage.

Similarly, the Hepatitis B vaccine made healthcare a less risky occupation; Hepatitis B is a blood borne infection contracted from contact with infected blood.

VACCINE-PREVENTABLE DISEASES — FROM THE CDC, UPDATED JANUARY 2016– follow link for detail

I was intrigued when I heard of a book, by a physician,that seems to promote a compromise-

The Vaccine-Friendly Plan is published by Ballantine Books, 2016

The Vaccine-Friendly Plan by Paul Thomas, M.D., a pediatrician and Jennifer Margulis, Ph.D.a science journalist.

It is based on his pediatric practice, Integrative Pediatrics, as well as their extensively noted references. The book’s subtitle summarizes the contents accurately-

“Dr. Paul’s Safe and Effective Approach to Immunity and Health- from Pregnancy through your Child’s Teen Years.”

The book discusses pregnancy, infant and child care in general, not just vaccination, although that is a major emphasis.There is a chapter about pregnancy and for each stage of child development through adolescence.

The first chapter discusses a popular health topic now- toxins. (As an aside, I don’t know when we started calling poisons “toxins”) . This should grab your attention-

“Toxins, Toxins, Toxins: Raising Healthy Children in a Poisoned World”.

Anything can be “toxic” if misused, overused,or abused but they concentrate on these toxins in particular- acetaminophen, aluminum, aspartame, fluoride, methanol, mercury, and what they call endocrine disruptors(this includes pesticides). They state “environmental toxins are likely contributing to the autism epidemic” as well as other neurodevelopmental and mental disorders in children. They base their conclusion on an extensive list of review articles from the medical and scientific that support their view (obviously) and also from Dr. Paul’s medical practice of 11,000 children who he calls “among the healthiest in the world.” While I suspect families who are already health conscious tend to select a physician who is health oriented, this claim sounds impressive.

I agree with some of the advice the authors offer. For example this advice for pregnancy is hard to argue with-

Eat a whole foods, organic, non-GMO diet
Skip the soda
Drink filtered water
Minimize stress
Get treatment for addiction
Join a support group

But in addition, they recommend declining all vaccinations during pregnancy, certainly not mainstream medicine advice.

A later chapter also offers sound advice:

“ The Best Ways to Support your Child’s Immune System”

Breast feed
Enjoy cuddling
Laugh a lot
Relax often
Rock your body
Stay hydrated
Eat a variety of foods
Maintain social connection
Read
Get Dirty
Be cautious but not afraid
Choose vaccines based on real science, your family’s needs and common sense
Sleep enough
Trust your children
Trust yourself

He offers an interesting list Ten Questions to Ask When Looking for a Pediatrician (which I assume would apply if you use a family physician for your child’s care).

As a physician, I have never liked the idea of being “interviewed” by a potential patient; I want a relationship with patients, not a job. But I think pediatricians routinely offer “get acquainted” visits so you may find it helpful. Some of the questions seem more appropriate to explore in a long term relationship with a physician, not quick answers in a short visit, like “What would you like me to know in order to keep my family healthy?”

An appendix compares the CDC immunization schedule of 1983 to the current 2016 version, illustrating many more vaccines and doses are now recommended.

Of course the list is longer since several new vaccines have been developed in the past 30 years and the CDC recommends those considered necessary for the public health. Most areas of medical care have changed dramatically in the past 30 years, we have a lot more of everything-drugs, procedures, etc- so this should not be a surprise.

Also in the appendix is Dr. Paul’s Vaccine Plan at a Glance, which is a much abbreviated version of the CDC recommendations. The plan is offered free at his web site drpaulapproved.com by signing up to receive his newsletter. (There is also a “store” on the web site offering an assortment of vitamins, minerals, probiotics and melatonin.)

The authors describe themselves as “pro-vaccine”, have received vaccines themselves and vaccinated their children. But they also believe that physicians and parents should have a choice and make informed decisions about immunization and other procedures.

Universal vaccination is recommended , but there are individual circumstances where the routine schedule might need to be altered due to a child’s particular medical circumstance, but not for some vague concern that vaccination might not b e “safe”. Neither is infectious disease.

If you are a parent who has rejected vaccination for your children, please read this book soon.