“The main thing every business leader should know about autism is the understanding of autism itself. Without it you will not only be unable to utilize the strengths of your employee, but it will be a complete waste of time, as you’re presuming you speak a language you’ve never learned better than someone who’s spoken it fluently their entire life.” ~ Futures Trader, USA
“ . . . The autism spectrum shouldn’t be viewed as a straight line of severity but rather a highly detailed colour wheel where each hue, tint and shade is a single autistic trait. Each individual has their own collection of colours making a unique palette that fits into the broader autism spectrum.” ~ Ashlea McCay, Autism Advocate and Speaker, Australia
For many people the fictional character, savant Raymond Babbitt—played by Dustin Hoffman in the Oscar-winning film Rain Man (1988)—was the first introduction to autism. Kim Peek, who was one of two extraordinary men that inspired the character Babbitt (the other being William Sackter), had the ability to recall strings of numbers and read both pages of a book at once. Said to have memorized 12,000 books and have the uncanny ability to provide directions between any two cities in the world, it isn’t surprising that Peek was tagged ‘a living Google.’ According to Psychology Today, Kim Peek had a ‘split-brain’ condition called Agenesis of the Corpus Callosum, a rare birth defect.
For decades, Peek has been the iconic representation of autism, even as Peek was a savant and an autistic—both two distinct syndromes that typically don’t go together. In fact, the character traits fictional Babbitt exhibited in Rainman are quite rare—and are quoted to come along ‘once in a century.’ A widely shared misconception is that savant syndrome is common amongst the autistic population. However, most individuals on the autism spectrum are not savant and savant syndrome is not unique to the autistic population.
“Not every person with autism is a savant. Movies have badly affected people’s idea of autism. ” Unemployed, Netherlands
Autism is a much more prevalent condition than savant syndrome (or having split-brain condition), and typically much less extreme than Peek’s condition. Currently, it is estimated that 1 to 2 percent of the world population is on the autism spectrum. Over 3.5 million individuals in the USA alone—and that’s not counting the influx of adults recently diagnosed, those adults yet to be diagnosed, and self-diagnosed autistic individuals who cannot financially afford the diagnostic process or are discounted by mental health professionals.
The last time I browsed the Internet for ‘what is autism,’ the Google search engine listed 7,960,000 results. Even as information about autism is prevalent, the descriptors of autism vary from site-to-site and agency-to-agency, with no two definitions typically identical. Markers and definers of ‘what is autism’ are dependent upon numerous factors, including the specific field of study or service an agency or establishment represents or is funded by, and by the consumer-, client-, and viewership-pool a organization is aiming to attract.
So how best to understand autism? When considering a definition of autism: consider the source. When in doubt about the particulars of an autism definition, I suggest asking yourself three questions:
- Is the definition easy to understand? Reread the definition. Does it make sense? Is it easy to conceptualize? Can it be reworded in a way that is clear?
- Is the definition autism-friendly? Does the vocabulary take into account an autistic audience? An autistic person? Is the word disorder used? Does the description have a clinical feeling that doesn’t include a human aspect? Is it void of compassion and consideration for the autistic person?
- Is the definition one you feel comfortable standing by? If a journalist asked for a quote about what autism meant, would this definition be acceptable? Is it a definition a manager can utilize when addressing coworkers who are on the autism spectrum?
Some individuals will never be in a situation where they are sharing a definition of autism. Regardless, it is still important for all individuals associated with diversity and inclusion, or the topic of autism, to establish a personal baseline about what autism means. It’s particularly important for autistic individuals or someone who educates or advocates around autism. Each individual, who determines and recalls the root meaning of what is autism, is building a springboard for future conceptions about autism.
The act of defining autism is best acquired through multiple sources. Establishing a baseline is akin to developing a definition for any a number of things in life. For instance, if one had to describe what it meant to be part of a particular house of faith. Going to a variety of sources to understand the concept of autism provides a more expansive view than one perception from a random online entity.
Let’s take a closer look at a random agency definition, (found online and modified).
Question: What is ASD?
Answer: Autism Spectrum Disorder, also called ASD, is an umbrella term for all autism related disorders. ASD is a serious developmental disability or neurodevelopment disorder that is the result of a neurological disorder that affects the normal functioning of the brain. Individuals who suffer from autism spectrum disorder can have repetitive patterns of behavior or restricted interests. The term disorder is used, because the symptoms can occur in any combination . . .
Variations of this definition are located on numerous agency websites. There is nothing clinically false or wrong with the definition. The intention appears to be to educate and inform.
But is this definition easy to understand, autism-friendly, and something to uphold?
You might agree what stands out is: the word disorder and how autism ‘affects the normal functioning of the brain,’ as well as the use of the word symptom. What I carry away from this definition is that I have a disorder, my brain does not function normally, and I have symptoms—which implies a disease. This definition is also sterile and lacks depth. When addressing an audience, I would steer away from this standard definition, for many reasons, including for the sake of the audience members who might be on the autism spectrum or have an autistic loved one.
Here is a more autism-friendly definition of autism on The Speech and Language Development Center website, listed in the top five of my Internet search results.
What is Autism?
“Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Scientists do not know yet exactly what causes these differences for most people with ASD. However, some people with ASD have a known difference, such as a genetic condition. There are multiple causes of ASD, although most are not yet known. There is often nothing about how people with ASD look that sets them apart from other people, but they may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”
In my opinion, this description is easy to understand, autism-friendly, and something I feel comfortable standing by. I likely would slightly adapt the definition by replacing the word disability with condition. As I see the coexisting conditions as the disability, and autism as a personal identity and culture.
My personal (short) definition of autism goes something like this . . .
Individuals who are on the autism spectrum:
- Have a neurological condition that differs from the mainstream population;
- Display social and processing challenges;
- Often have debilitating coexisting conditions, e.g., anxiety, PTSD; and
- Have unique skills and attributes that oftentimes set them apart from others.
A Closer Look at the DSM and Autism
From a psychological professional standpoint, the updated Diagnostic and Statistical Manual of Mental Disorder (DSM-V, 2013) describes Autism Spectrum Disorder (ASD) as a neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction across multiple contexts, including deficits in social reciprocity, nonverbal communicative behaviors used for social interaction, and skills in developing, maintaining, and understanding relationships. The diagnosis also requires the presence of restricted, repetitive patterns of behavior, interests, or activities (JAN Job Accommodation Network).
The DSM-V is the mental health diagnostic tool widely utilized in America; however, in other countries, other diagnostic materials might be referenced. In example in the United Kingdom, clinicians might refer to the World Health Organisation’s International Classification of Diseases (ICD).
I have Asperger’s Syndrome (AS), even as Aspergers is no longer included in the latest edition of the DSM-V. The characteristics of Asperger’s Syndrome are now considered a part of a broader continuum of Autism Spectrum Disorders (ASD). While the DSM-V is widely recognized, professionals still acknowledge an individual with a previous diagnosis of Asperger’s Syndrome.
The Problem with the DSM
The Diagnostic and Statistical Manual of Mental Disorder (DSM) dates back to the 1800s when the United States government set out to classify mental disorders through the United States Bureau of the Census, by counting the number of patients in mental institutions, a time when the terms idiocy and insanity first appeared.
Steve Phelps, in The Atlantic article Before Autism Had a Name, explained, “In the days before psychiatry’s Diagnostic and Statistical Manual, the DSM, diagnoses were done by ballot, with a group of doctors voting, for example, on whether a child was schizophrenic or simply ‘feebleminded.’ When compared to the richness of human variety, their categories were few—as though sorting worlds of color into bins of blue and yellow—and doctors might not agree on how to label any particular hue of human experience.”
A number of criticisms of DSM have arisen since its original publication in the 1950s, including from experts in the field of mental health and valued educational professionals who find the DSM conceptually flawed and theory-laden. “Psychiatrists at the top of their specialties, clinicians at prominent hospitals, and even some contributors to the new edition have expressed deep reservations about it,” reported Gary Greenberg in Wired Magazine.
Some opponents of the DSM believe that some mental disorders that are biological in nature may represent a genetic advantage in the human population and be indicators of the natural selection process. The identification of certain mental illnesses is highly subjective and at best representative of ever-fluctuating points of views of social behavior and scientific studies that typically leave more questions than answers.
In example, the DSM, up until 1973, listed homosexuality as a mental illness.
Despite the natural biases and public criticism, the DSM-V is largely referenced as the bible of psychiatry and psychology. In a recent public posting, I highlighted the natural biases:
“The Diagnostic and Statistical Manual of Mental Disorder also has a natural bias—a bias that is influenced by deep pockets and special interest groups, a bias most prevalent in the profit goals of health insurance agencies and pharmaceutical companies, and a bias further inflated by the educational lobbyists working to fund higher-education research projects. This bias is also stemmed from cultural influences and human nature—the inability to remove the definition of disorder from a personal value judgment based on cultural and individualized perception . . . The DSM-V is not a neutral entity with the interest of mental health clients and patients in mind. In strong contrast, the DSM-V is dependent upon outside influencers with vast economic and political power. It is a ‘bible’ with some arguably practical and applicable data, set in a broth of bleeding conjecture and greed.”
The Holistic Meaning of Autism . . . Does it Exist?
DSM squabbles aside, the diagnosis of autism is far from being an exact science and there is plenty more that experts don’t know about autism than they do know. Some neurological scientists debate if autism isn’t actually in the same family as other brain variations, such as Tourette’s and dyslexia. Contrary to what some believe autism isn’t a disease. It is recognized as a neurological developmental disorder or condition.
Scientists are now learning that genetic markers can vary vastly from one autistic individual to the next. Today, even as classic autism, pervasive developmental disorder (PDD), and high-functioning autism (HFA) are all considered under the umbrella of ASD, more and more the lines are becoming blurred. Furthermore, there is much crossover between autism and common coexisting conditions, such as anxiety, sleep challenges, physical manifestations (epilepsy, digestion, connective tissue disorder), cognitive conditions (dyslexia, dysgraphia, dyspraxia, face-blindness) and mental conditions (ADHD, mood disorders).
It’s sometimes hard to keep track of the holistic meaning of autism as the definition keeps changing. Here is a brief timeline of the alterations in the DSM associated with autism:
- 1980s: ‘infantile autism’ listed in the DSM and autism separated from schizophrenia
- 1987: DSM definition changed from ‘infantile autism’ to the wide-ranging definition of ‘autism disorder’
- 1994: Asperger’s is added to the updated DSM
- 2013: Autism Spectrum Disorder (ASD) puts all subcategories of autism into one diagnosis/Asperger’s Syndrome no longer defined as a standalone diagnosis
Once indicative with severe and limited speaking abilities, now the criteria listed in the DSM-V for ASD includes a wide range of communication styles and challenges. My own little professor, diagnosed with Asperger’s at age five (at the U.C. Davis Mind Institute in California, USA), would not have fit the original narrow definers of autism when he was a child (in 2005). Once only recognized as having Asperger’s Syndrome, now he falls under the autistic umbrella. Though he claims none of it is very logical to him—the labels and definers—as he is just human.
This is a portion of the manuscript ‘Autism in a Briefcase.’ No portion of this article or works on this blog can be used without explicit permission from the author. All rights reserved. Marcelle Ciampi, M.Ed (aka Samantha Craft) is a senior recruiter, outreach specialist, author, professional educator, keynote, and more. More articles can be found here, at myspectrumsuite.com, and on LinkedIn.