Tag Archives: autism

The word AUTISM written in vintage letterpress type

Top post of 2017- why the increase in autism?

You’ve heard and read much about autism recently. The top new TV drama this season , The Good Doctor, has a major character with autism (although the actor himself is not).

This illustrates the interest in autism spectrum disorders, and the controversy. We are not certain of the cause, and wonder why the condition is diagnosed more frequently.

Perhaps that explains why this was the most viewed post on this blog in 2017.

Light it up blue-autism speaks

 

 

 

Like other physicians and families of people with autism, I puzzle over the increased number of children and adults diagnosed with autism. Most of us have theories about why we now believe 1 in 68 children have autism spectrum disorders.

People point out that “when they were children” they never knew of anyone with autism. There are those who are absolutely convinced that the increased numbers of autism followed the introduction of the measles-mumps-rubella vaccine, MMR. Others implicate genetics, environmental toxins, diet, and intrauterine brain trauma.

I found an article that offers a sound, well thought out and expressed explanation. It contains several points that I have identified and some I had not.

The article was published in Spectrum whose commitment is “to provide accurate and objective coverage of autism research.” Spectrum is funded by the Simons Foundation Autism Research Initiative. Senior News Writer Jessica Wright, Ph.D. in biological sciences from Stanford University, wrote the report. (Scientific American also published the article by permission.)

In the article, Dr.Wright concludes,

“The bulk of the increase (in autism rates) stems from a growing awareness of autism and changes to the condition’s diagnostic criteria.”

First , let’s consider some terminology. Prevalence is an estimate of how common a disease or condition is in a particular population of people at any given time.

So the prevalence of autism in children would be

the number of children identified as autistic at any given time

divided by  the total number of children alive at that time .

The currently accepted rate of autism is 1 in 68 children, or 1.4 %.

So  autism prevalence depends on children being correctly identified as autistic. At any given time, some autistic children may not be identified, and some may be  incorrectly identified.

We do not have any totally objective tests available for autism yet. There is no blood test, scan, culture, imaging study, DNA test, or  monitor to definitely conclude that autism is or is not present.

 

 

 

 

The definition of and criteria for autism have changed substantially since “infantile autism” was first identified by Leo Kanner over 70 years ago. Since 1980, the diagnosis is based on applying the criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM). In the most recent version, DSM-5, released in 2013, autism, Asperger syndrome, and pervasive developmental disorder, formerly separate, are now a single diagnosis.

Autism Spectrum Disorder is characterized by

  • Persistent deficits in social communication and social interaction across multiple contexts
  • Restricted, repetitive patterns of behavior, interests, or activities
  • Symptoms must be present in the early developmental period (But may not yet be fully expressed or may be modified by learned behavior in later life)
  • Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  • These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

At this link you may read the full detailed criteria from DSM-5

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

 

When the diagnostic criteria for other diseases change, the prevalence also changes. Examples include diabetes, high cholesterol, high blood pressure, migraine, obesity, depression , even some cancers. So autism is not unique in this regard.

The currently accepted rate of autism, 1 in 68, comes from the Autism and Developmental Disabilities Monitoring Network, established by the CDC in 2000. Children are identified by reviewing health and school records of 8 year olds in selected counties. So possibly some children get missed, and some assigned incorrectly.

 

 

 

 

 

 

 

 

 

Another major milestone in autism awareness occurred in 1991 when the U.S. Department of Education ruled that autistic children qualify for special education services.

 

Parents of children with developmental and intellectual disabilities  have an incentive to secure accurate diagnosis, to qualify their child for services they otherwise might not  have access to.

 

 

Since 2006, the American Academy of Pediatrics recommends routine screening of all children for autism at 18 and 24 months old. Many physicians, psychologists, and therapists believe early intervention improves these children’s chances to do well intellectually and socially.

If we could go back and review records of children 10, 20, or 30 years ago, and apply current diagnostic criteria, would we find less autism than we do today? Perhaps. But such records would likely reflect the understanding of autism at the time, so might still fail to recognize autism, even when present by today’s standards.

The apparent increased number of children with autism seems alarming-some call it an epidemic. It may represent our increased awareness, recognition, and knowledge about this disorder. And while this increase should raise concern, it can lead to increased research, treatment options, and more effective care for autistic persons.

Here is a link to the original article

Autism Rates in the United States Explained

 

 

 

How The Good Doctor became such a hit

“Highmore’s ( actor who plays an autistic surgical resident ) restrained yet not emotionless portrayal has also resonated within the autism community. Shore (the producer) has heard from multiple people who have found the series inspiring, including one mother who told him that her son, who is on the spectrum and has struggled with depression, agreed to resume therapy after watching the first episode.”

 

 

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Light it up blue-autism speaks

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

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 

 

 

The word AUTISM written in vintage letterpress type

Are too many children autistic?

Like other physicians and families of people with autism, I puzzle over the increased number of children and adults diagnosed with autism. And most all of us have theories about why we now believe 1 in 68 children have autism spectrum disorders.

People point out that “when they were children” they never knew of anyone with autism.There are those who are absolutely convinced that the increased numbers of autism followed the introduction of the measles-mumps-rubella vaccine, MMR. Others implicate genetics, environmental toxins, diet, and intrauterine brain trauma.

I found an article that  offers a sound, well thought out and expressed explanation. It contains several points that I have identified and some I had not.

The article was published in Spectrum whose commitment is “to provide accurate and objective coverage of autism research.” Spectrum is funded by the Simons Foundation Autism Research Initiative. Senior News Writer Jessica Wright, Ph.D. in biological sciences from Stanford University, wrote the report. (Scientific American also published the article by permission.)

In the article, Dr.Wright concludes,

“The bulk of the increase (in autism rates) stems from a growing awareness of autism and changes to the condition’s diagnostic criteria.”

First , let’s consider some terminology. Prevalence is an estimate of how common a disease or condition is in a particular population of people at any given time.

So the prevalence of autism in children would be

the number of children identified as autistic at any given time

divided by  the total number of children alive at that time .

The currently accepted rate of autism is 1 in 68 children, or 1.4 %.

So  autism prevalence depends on children being correctly identified as autistic. At any given time, some autistic children may not be identified, and some may be  incorrectly identified.

We do not have any totally objective tests available for autism yet. There is no blood test, scan, culture, imaging study, DNA test, or  monitor to definitely conclude that autism is or is not present.

The definition of and criteria for autism have changed substantially since “infantile autism” was first identified by Leo Kanner over 70 years ago. Since 1980, the diagnosis is based on applying the criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM). In the most recent version, DSM-5, released in 2013, autism, Asperger syndrome, and pervasive developmental disorder, formerly separate, are now a single diagnosis.

Simply explained, Autism Spectrum Disorder is characterized by

  • Persistent deficits in social communication and social interaction across multiple contexts
  • Restricted, repetitive patterns of behavior, interests, or activities
  • Symptoms must be present in the early developmental period (But may not yet be fully expressed or may be modified by learned behavior in later life)
  • Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  • These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

Here is the full detailed criteria from DSM-5

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

 

When the diagnostic criteria for other diseases we diagnose and manage changed, the prevalence also changed. Examples include diabetes, high cholesterol, high blood pressure, migraine, obesity, depression , even some cancers. So autism is not unique in this regard.

The currently accepted rate of autism, 1 in 68, comes from the Autism and Developmental Disabilities Monitoring Network, established by the CDC in 2000. Children are identified through reviewing health and school records of 8 year olds in selected counties. So possibly some children get missed, and some assigned incorrectly.

Another major milestone in autism awareness occurred in 1991 when the U.S. Department of Education ruled that autistic children qualify for special education services. This ruling encouraged parents of children with developmental and intellectual disabilities to secure accurate diagnosis, to qualify for services they otherwise might not  have access to.

Since 2006, the American Academy of Pediatrics recommends routine screening of all children for autism at 18 and 24 months old. Many physicians, psychologists, and therapists believe early intervention improves these children’s chances to do well intellectually and socially.

If we could go back and review records of children 10, 20, or 30 years ago, and apply current diagnostic criteria, would we find less autism than we do today? Perhaps. But such records would likely reflect the understanding of autism at the time, so might still fail to recognize autism, even when present by today’s standards.

The apparent increased number of children with autism seems alarming-some call it an epidemic. It may represent our increased awareness, recognition, and knowledge about this disorder. And while this increase should raise concern, it can lead to increased research, treatment options, and more effective care for autistic persons.

Here is a link to the original article

Autism Rates in the United States Explained

 

The story of autism isn’t just about statistics, theories, and criteria; it is about the  children and adults with autism, and their families. Here are just two of many stories of how autism plays out in real life.

We Are Autism, Too. Don’t Forget About Us.

“My boy, with his classic autism, the kind that used to be the only face of autism half a century ago, is the one who does not belong now.”

Looking Into the Future for a Child With Autism

“As my son’s limitations became clearer, I found it harder every year to write a vision statement for his I.E.P. Then he showed us how.”

 

And in this  previous post  I share my personal experience with autism.

Why I have a different way of seeing autism

Light it up blue-autism speaks

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?

World Autism Awareness Day, established in 2007,  is one of only three official health related United Nations Days.

The purpose of Autism Awareness is

  • to  bring the world’s attention to autism, a pervasive disorder that affects tens of millions.
  • to raise awareness about autism throughout society and
  • to encourage early diagnosis and early intervention. 
     

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.

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.

 

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.

 

 

 

The word AUTISM written in vintage letterpress type

Why I have “A Different Way of Seeing Autism”- a book review

 

 

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.

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.

 

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.

 

Learn What motivated Dr. Prizant to write Uniquely Human

in this interview by autism specialist Becca Lory

 

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The word "Read" written in black paint on a colorful watercolor washed background.

Reconsidering vaccination- a book review

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

 

 

 

 

 

So, I was  first surprised, then puzzled, then alarmed , now resigned to 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.

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

The Vaccine-Friendly Plan

 

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.

vaccines

CDC Immunization Schedule– follow link for detail

 

 

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.

Also, read another review of this book by  Vincent Iannelli, MD is a pediatrician and Fellow of the American Academy of Pediatrics.

 

 

 

 

Sonia Shah, a science journalist, also wrote about vaccination in her book

Pandemic – Tracking contagions from cholera, to Ebola, and beyond

Read my review at this link Pandemic- a book review

 

Pandemic by Sonia Shah

 

Previous posts about vaccination on this blog include

Vaccination prevents disease – Part 1 and Part 2

 

Explore the Category “books, literature, writing” for more book reviews.

And please follow this blog for more articles to

inform, instruct, and inspire you to explore the

HEART of HEALTH.      

a stethoscope, a red heart and a heart ekg tracing

exploring the HEART of HEALTH

Happy birthday

Tomorrow is February 29

Or rather it was or will be in 2012 , 2016, 2010 or 2024.

To those of you born on February 29, I wish you a happy birthday.

I have a close relative who was born on February 29, so we only get to celebrate her actual birth date every four years. We usually do it on February 28 and she doesn’t seem to mind that it is not the correct date.   My friend’s mother was born on February 29 , 96 years ago. She has had 24 birthdays so far.

I can somewhat sympathize with people born on February 29. My birthday is within a week of Christmas, December 25, so I often feel like I have a non-birthday- it can easily get overlooked. When I was a child , my mother tried giving me a birthday but kids were often too busy, or had already left to spend Christmas at grandma’s house.

One mother of an autistic boy took to social media when no one showed up at his birthday party and the response was surprising. Read what happened at this link.

Children and adults with autism may miss out on activities that other children do. That’s while awareness and acceptance of those who are different, whether due to autism or something else, is so important.  Including them in everyday life enriches their lives and ours too.

Here are links to posts on this blog about autism-

Why I have “A Different Way of Seeing Autism”- a book review

Are too many children autistic?

Why I observe Autism Awareness Day

Light it up blue-autism speaks