autism – Page 2 – watercress words by Dr Aletha

Is there an increase in autism?

The article discusses the rising awareness and diagnosis rates of autism spectrum disorders, noting that 1 in 68 children are now identified as autistic. It highlights changing diagnostic criteria and increased understanding of autism. Additionally, the portrayal of autism in media, like “The Good Doctor,” influences public perception and interest in the condition.

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.

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.

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.

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

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.

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

THINKING IN PICTURES MY LIFE WITH AUTISM book by Temple Grandin — *THINKING IN PICTURES MY LIFE WITH AUTISM*

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

The premise is simple: Shaun Murphy, played by Highmore, is an autistic surgeon with savant syndrome. His stream of consciousness speaks the language of anatomy, and when the show’s particularly keen on calling attention to his genius, organs and veins and glands float above his head like illustrations ripped from a med-school textbook. “He’s not Rain Man,” says his main advocate at the prestigious St Bonaventure hospital in an attempt to convince the board that Murphy is hirable and high-functioning. To those in the autism community, the show has deftly done just that. “The Good Doctor does a fine job of navigating this razor’s edge,” wrote Kerry Magro on the website Autism Speaks, noting that it shows “several characteristics that can accompany an autism diagnosis such as social awkwardness, lack of eye contact, playing with his hands during stressful situations”. He adds: “Freddie’s take will resonate with many in the community.”
Jake Nevins, The Guardian

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Most viewed post #2- “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.”

I suggest continuing here for an updated version of the original post.

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…

by Aletha Cress Oglesby, M.D. January 29, 2017March 15, 2024

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.

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 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.

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Tag: autism