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Beyond The Puzzle Piece

Beyond The Puzzle Piece: Autism’s Forgotten History

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 “Those who don’t know history are destined to repeat it.” – Edmund Burke

History’s undeniable value is why we continue to teach and study the great events of the past, both tragic and triumphant alike. Scholars compel humanity to analyze events within their historical context and evaluate the consequences of those events. This approach is particularly relevant when looking at the history of Autism and the Autism Spectrum.

Napoleon Bonaparte, a great student of history, mused that “History is a set of lies agreed upon,” a warning, in part, that urges the importance of objectivity when using history to help best understand the lessons learned from previous generations. If history is to be the great teacher, how does autism’s history factor into the current evolving understanding of autism today? As a parent, why is it so important to learn about the past when gathering the information necessary to best guide your child?

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Many people are unfamiliar with neuropsychology’s history and how it molds our present understanding of the human brain. Current information is far more technically rigorous and medically accurate than it was when the field first developed. Yet when it comes to autism, more often than not, the history of the autism spectrum and its discoveries impact how autism is viewed today.

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Life Growing Up With Autism: First Hand

In my own experience, I freely admit that history was not one of my first stops when gathering my initial information on autism spectrum disorders. However, knowing the history and the process by which autism came to be formally recognized is necessary to understand modern therapeutic techniques and those touted by past experts. Such comprehension will help one gain perspective of where autism advocates stand today and what direction is necessary go from here, in part by supporting families and individuals who live with autism. With such awareness, parents and care givers can begin to form the important questions that help inform your decisions to choose the best treatment available.

Autism’s Beginning

I recently read a few articles about “Autism’s First Child”, Donald Gray Triplett. Donald was one of the many children that were treated by Dr. Leo Kanner in the 1930’s and 1940’s, and was the first to receive the Autism label based off of Dr. Kanner’s research. Working with these children guided Dr. Kanner’s criteria to the diagnosis he refereed to as infantile autism. Dr. Kanner’s clinical description of infantile autism is similar to what many people would call “classic autism” or “low function autism,” but does not wholly match the modern definition. Dr. Kanner described infantile autism as a child who is unable to relate to others in a typical fashion, such as utilizing little or no verbalization. Or a child who is anxious, obsessive, and at times disruptive for no apparent reason.

In the same period as Dr. Kanner’s research, the Austrian pediatrician Dr. Hans Asperger was working with another group of children who had similar, but not completely overlapping, sets of symptoms to those observed by Dr. Kanner. Dr. Asperger referred to his patients as “Little Professors“. Most of Dr. Asperger’s children loved to speak and possessed a vast body of knowledge on their topics of interest. Symptoms shared with Dr. Kanner’s patients included socialization difficulty as well as difficulty adapting to changing environments or activities, leading to disruptive episodes. This set of criteria was eventually termed Asperger Syndrome, but was still considered to be a separate diagnosis from Dr. Kanner’s infantile autism. While Dr. Asperger noted similarities between the two sets of children, his group did not seem to have the language difficulties that Dr. Kanner’s group did which led the researcher to conclude it was a different syndrome and not entirely related. Two separate authorities an ocean apart conducted separate clinical research at virtually the same time, and each assumed theirs was unrelated to the other. Later researchers demonstrated a correlation of the two syndromes by studying the history of their research and comparing it to current research.

Authority: Expanding Theories & Problematic Credibility

During the time of Kanner and Asperger’s research, the common therapeutic approach was to place an autistic child in a institution. Dr. Leo Kanner believed autism was a form of childhood psychosis or schizophrenia caused by inadequate parenting. This assertion was shared by Bruno Bettleheim an influential and deeply problematic autism researcher at the University of Chicago.

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Bettleheim was an Austrian born psychologist, who claimed to have completed his doctorate at the University of Vienna. Following the German annexation of Austria in 1938, Bettelheim, who was Jewish by birth, was sent to Dachau and later Buchenwald concentration camps. He managed to be released in 1939 and fled to the United States as a Holocaust refugee.

Bettleheim agreed with Leo Kanner’s often repeated epithet Refrigerator Mother as a cause for autism, and promoted that autism was caused by unloving parents or a traumatic home life. Bettleheim ran the Orthogenic School at the University of Chicago in which he claimed to have treated hundreds of severely disturbed children and allowed them to go on to lead a normal life.

Bruno Bettleheim’s theories about autism came from the observations he made during time imprisoned in Nazi concentration camps during the Second World War. Bettleheim saw the withdrawn behavior of children with autism as similar to the behavior of those children who were held in the camps. Bettleheim hence came to his belief that autism was a byproduct of childhood trauma and unloving parents.

Before Bettleheim’s suicide in the 1990’s, it was discovered that much of his research was not only inaccurate, but at times also plagiarized, or altogether fabricated – including his prestigious degrees. Fortunately the research advances made in the 1980’s led to these theories being questioned, and later discoveries further discredited his work.

A Neurobiological  and Behavioral Approach: A New Paradigm

Until 1964, these aforementioned theories were considered to be definitive. The only treatment was to place a child diagnosed with autism or Asperger syndrome in an institution. Parents who rejected the accepted treatment established in the 30 years prior and refused to institutionalize their children had little support from society or the medical establishment. Until psychologist Dr.Bernard Rimland publicly denounced these accepted notions with his paper  Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior in which he established possible genetic explanations for Autism.

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Raising Boys Who Happen To Have Autism: A Mother's Story

Dr. Rimland was not only a researcher, he also had a son with autism. This strong relationship with autism helped form his role as an advocate for parents and individuals with autism. He believed autism to have a biological component and later explored possible environmental exposures as a cause. Dr. Rimland was an early proponent of Applied Behavior Analysis (ABA), a therapy that uses interventions based on learning theories to increase social and life skills. He also helped to develop the first diagnostic checklist for autism which remains the standard rubric today. His theories continued to become more accepted through the 1970’s as he was intimately involved with public organizations such as Autism Research Institute and the Autism Society of America. Despite his efforts, many people still associated autism with intellectual disability (formerly known as mental retardation), psychosis and improper parenting. He worked to change the focus of autism’s cause from bad parenting to theories based on behavior intervention and biology.

Recognition of the Autism Spectrum

It is important to note that through the 1970’s and 1980’s, the vast majority of individuals who were considered as having autism were those who met Kanner’s diagnostic criteria. Over time, the work of Asperger was all but lost. It was not until 1981 that his work was translated into English by Dr.Uta Frith. Then researcher and autism advocate Dr.Lorna Wing began to identify that these disorders were related.

Wing, like Rimland, was a mother of a daughter with autism which fueled her research. Her rediscovery of Asperger’s work allowed Asperger Syndrome to eventually be included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1994. Her theory of the Autism Spectrum began to gain support through the 1980’s and 90’s, but was not recognized in the DSM  until 2013. Before that time, the separate spectrum disorders including Autistic Disorder (sometime referred to as classic Autism), Pervasive Developmental Disorder – Not Otherwise Specified (PDD – NOS), Asperger Syndrome, Childhood Degenerative Disorder (CDD) and Rett Syndrome, were diagnosed individually. Lorna Wing’s work allowed the world to see that various autism disorders are indeed connected.

The Great Teacher Has Not Finished Its Lesson

In medical and societal spheres autism is still in a time of great discovery. It is a time when those in the autism community – be it parents, caregivers, educators, clinicians, researchers and individuals with autism – should work together to help discover the best ways to support those with autism. This includes improved means to cultivate their way of communication, their talents and their way to become a part of society. As opposed to the idea that those with autism are a piece outside the socially accepted norm; a puzzle piece that we have yet to properly fit. As autism research is still in its infancy, it is also vulnerable in regards to proper research. Financial means can afford sought after results towards any end. Consequently, studies with sensational preliminary findings are published by mainstream media before their results can be duplicated and verified, further hindering progress. It takes considerable knowledge and patience to find valuable and verifiable medical research. While autism has come a long way from institutionalization and the parental blame of “refrigerator mothers,” the journey continues toward true autism acceptance. Yet if we are ever to truly arrive, we must always keep one keen eye to the past as well.

 

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Anne DeFranco is a TGNR Senior Contributor-at-Large. Anne is also veteran special education professional, and has published on the subject of autism extensively. Anne DeFranco joined TGNR in 2016.

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4 Comments

  1. Pingback: Primates Paralyzed Leg Restored With Spinal Stimulation | NEUROnomics | TGNR | The Good News Review

  2. marcmcdonald74

    April 23, 2017 at 6:20 AM

    Great info, thank you!
    Check out a family Im friends with in Ireland. Youtube vlog Life Being Blue about Luke Adam Cassidy’s gains with his family.

  3. Pingback: First Artificial Embryo Grown: A Solution to the Stem Cell Debate - TGNR

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Beyond The Puzzle Piece

Life Growing Up With Autism: First Hand

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Chris Jones autism interview

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In this edition of Beyond the Puzzle Piece, I introduce you to Christopher Jones. Christopher is an 18 year old math enthusiast, with an interest in history and politics as well. Chris also has a unique experience and voice when it comes to Autism Spectrum Disorders. Following an initial diagnosis with Asperger Syndrome at the age of 4, Chris has received Special Education services since that time. He was part of the first wave of students with what is called “High Functioning Autism” to go through the educational system while receiving services specifically for his needs. Chris has received Physical and Occupational Therapy to help cope with sensory issues, as well as Speech and Language Therapy and Social Skills groups to assist in communication skills. He started in a self contained Autism Support Classroom with a dedicated Special Education Teacher, and was gradually included further into the general education classroom. Now 18, Chris is a High School Senior with very strong opinions about everything from music to politics, and certainly autism. Join my conversation with Christopher as he shares with TGNR the thoughts, experiences, informed views, and reflections of his life with autism.

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Beyond The Puzzle Piece

Raising Boys Who Happen To Have Autism: A Mother’s Story

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Autism a Mother’s Story
Image Credit: Pexels

For TGNR’s 1/31/2016 installment of Sunday Brunch, TGNR introduces you to Anne DeFranco. This is the first edition of a monthly column that will discuss autism from the perspective of both a parent and as a Special Education professional. Anne is the proud mother of three children; her two eldest sons have been diagnosed with Autism. Both are now high school age.

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Professionally, Anne has earned bachelor degrees in Special Education and Elementary Education. Additionally, she holds certifications for Secondary Education and English As A Second Language. Anne has worked as a special education teacher in both traditional and non-traditional classroom settings.

She has served as a school Supervisor for Special Education, as well as a District Representative for the Special Education Department, grades 7-12. Most recently, Anne worked as a Program Supervisor for a live-in facility, overseeing four adults with severe disabilities, all of which were non-verbal.

In her first installment, Anne tells her story about Autism, how it became a part of her life as a mother and ignited her passion to bring the best information and guidance to those in need.

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Our Story

Autism and Anne DeFranco Anne DeFranco/TGNR

Anne DeFranco

When my oldest son was in preschool, it became clear that he was not like the other children in his class. My son had always presented as very active. He also had a few odd behaviors such as not making eye contact when talking to us or moving his hands in a strange way (that we latter learned was a “stim” or self stimulating behavior). My son played with his toys in an unusual manner, such as lining them up instead of engaging in pretend play.

He was also very rigid in keeping to a schedule and deviation spelled disaster. At the time we told ourselves, “what toddler does not have a few odd behaviors?” Young children can be challenging teachers, as anyone who has spent time with a toddler can attest!

Eventually, his behavior reached a point where they began to impact his ability to learn and his ability to appropriately make friends.

A Beginning

As the behavior of my son progressed, I began dreading taking him to school. His teacher would inevitably have the look on her face that would suggest she had been hoping and praying he would be sick that morning. Picking him up from school was also a nightmare! He would cry and refuse to leave the classroom, unable to handle the abrupt change in activities.

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His teacher, the ever present centurion at the door was there to deliver the report of his behavior for the day. The other parents waiting in the hall gave me sideways glances, not daring to make eye contact. Each trying in their own way to pretend that my private Hell and I did not exist.

To them, my child was simply “that kid,” the one classmate which parents always heard a bizarre story about on the way home. I was beside myself and had no idea what was going on with him.

A Serendipitous and Fateful Encounter

After picking up my son one afternoon, the teacher’s aide approached me in the parking lot. She was a very kind woman and always tried to say something positive when she saw me.

“I just wanted to give you some information…”she started hesitantly. I think she was afraid I would not want to hear what she was going to suggest.

“Information about what?” I asked, probably just as hesitant. At this point all I had heard from people at school was how horrible my son’s behavior was.

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“I have a daughter who is now in middle school. She had many issues when she was your son’s age and a lot of the same behaviors. But she is also very smart, which I believe your son is too. I know his teacher is overwhelmed with his behaviors, but when I work with him one on one, he is showing signs of being able to read and identify things I have rarely seen in preschool children. My daughter was recently diagnosed with Asperger’s syndrome. It might be something you want to look into as well. Just a suggestion…”

I stood there in the parking lot quietly, trying to absorb this information. I thanked her and said good bye and got into the car to drive home. That evening I began to search for information on Asperger’s Syndrome.

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Beyond The Puzzle Piece: Autism's Forgotten History

Autism & The Search For Answers

My conversation with the aide took place in 2002. At that time Asperger’s had only been introduced into the Diagnostic and Statistical Manuel for Mental Disorders (DSM) in 1994. The diagnosis had been recognized abroad prior to that time, but it was a newly accepted diagnosis in the United States.

In 2002, information was harder to come by. Even our pediatrician was not able to provide me with accurate answers. Had I not persisted despite these obstacles, I may not have received answers as quickly.

If it had not been for the brave and caring intervention of this teacher’s aide, as one parent to another, our journey for answers may have been comparatively obtuse. Further, the diagnosis of my eldest son is what led to the earlier diagnosis of my second son.

To this day I believe that early intervention and the speech therapy he received helped him with his extraordinary acquisition of language and social skills.

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The 2016 Dilemma: Making The Right Choices A Midst The Noise

This is a clear shift from 2002. Today, autism holds a cemented presence in the collective national outlook regarding public health. Whether it’s the ongoing debate over causes, purported cures, or portrayal in the media, autism regularly permeates the news.

As such, parents and caregivers seem to have the opposite problem in 2016 than I had in 2002. There is so much information that the challenge has shifted to identifying which information is accurate and, moreover, what portion is applicable for each unique diagnosis.

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Convenience of data has made it easier for caregivers to explain autism to concerned family members and loved ones.  However, misinformation can often cause these same family members to become armchair psychologists and physicians.

The Danger of Misinformation

When formulating the best choices for your child, this chorus of advice can be at the very least annoying and at the very worst dangerous. Erroneous information may lead to family members pushing inappropriate or untested therapies-such as a restrictive diet- without testing for medical need or additional monitoring for adequate nutrition. 

Unsubstantiated treatment claims can also push parents away from well tested therapies. Approaches such as well balanced diets, speech, occupational therapy for sensory integration, or even social skills groups.

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Accessibility of information about autism has without doubt increased awareness, but also allows unsubstantiated cures to  be accessed just as easily. The good intentions of family members are not in question; the veracity of their data is.

Family Denial

Some family members may flat out deny the child displays any of the behaviors in question or even the existence of autism altogether. The growing acceptance of autism in popular culture has led to the creation of a caricature or allusion to autism in certain characters that downplays and degrades the reality and may make it seem as if autism is a farce or fad. This can at times lead family members to dismiss the gravity of what parents may be facing.

I had family members that fell into the latter category. They would express that I wanted something to be wrong with my children, therefore I imagined the symptoms and pushed a diagnosis.

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Such behavior makes for frustrating family gatherings and strained family relationships when what a caregiver truly needs is a support system.

What I Give To You

In the time since my sons have been diagnosed, I have met and worked with many individuals with Autism Spectrum Disorders. I have taught self-contained Autistic Support classrooms with young elementary aged children as well as in mainstream middle school and high school settings.

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I have guided individuals in non-traditional settings. Activities such as day camps and nature center classes. I’ve worked with adults with autism. For all the counsel and instruction I gave, all the education I have accomplished, I have never stopped learning.

The most important lesson I have learned is this: the best information about autism, outside of the medical community and professional educators (with whom I strongly urge parents create a healthy partnership), comes from other people with autism and their caregivers.

Most communities now have excellent support groups for caregivers, individuals with autism at any age, and even siblings of individuals with autism.

I offer this column as a way of sharing these experiences and exploring other important topics. Serving to further the pursuit of a real understanding of autism. As one who has been a parent, and who has worked professionally in special education, I want this column to serve as an avenue to provide the best information available to people in all stages of managing autism as well as creating an open and respectful discourse for anyone that may be in need.

(Article Continues Below...)

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The Lesson Only Time Could Teach

My sons are nearly adults now. Autism is a part of our every day life, but I have made sure that my boys know that their defining label is not autism. They are young men who happen to have autism. My oldest will be 18 this spring and will be attending college in the fall. He plans on studying math with the hope of getting a master’s degree and a job in the statistical analysis field.

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My younger son is in the 10th grade. He would like to study psychology and music and use both to help others as his career. Little do they know that together they have taught me about the amazing intricacies of the human mind. Namely for we we know as autism. Or more importantly, how to be the best mother, teacher and human I can be.

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