Autism and Health Care: What is Autism?

Autism / Autism Spectrum Disorder (ASD) - a developmental disability that can cause significant social, communication and behavioral challenges (CDC, "Autism Spectrum Disorder")

Asperger's - a form of autism long distinguished from more severe forms of the disorder by its lack of cognitive and language deficits (Spectrum News, "Asperger Syndrome"). As of 2013, the DSM 5 eliminated the individual Asperger's diagnosis, and today no one is individually diagnosed with Asperger's.

autistic - a person who has autism or is under the umbrella of autism spectrum disorder.

"aspie" - colloquial in-community term for people with Asperger's.

disability-first / identity-first language - putting the nouns before the pronouns when describing an individual, i.e. "autistic person." Some activists and advocates in the autism community prefer to describe themselves identity-first, to remove the negative connotation potentially implied in person-first language. (Autism, "Which terms should be used to describe autism?")

--- Autism Self Advocacy Network (ASAN), "Identity-First Language"

person-first language - language that refers to people first as individuals and then to their disability only if necessary. I.e., "person with autism" (Blaska, "The Power of Language: Speak and Write using 'Person First'"). Some individuals prefer to use person-centering language to avoid othering people with disabilities. However, some people within the disabled community prefer identity-first language (i.e., "autistic people"), as a way of removing the negative connotation potentially implied in person-first language. See "disability-first / identity-first" above.

neurodivergent - the diversity of human brains and minds. When compared against the average, or "normal" behaviors of the broader population, any brain that deviates from the socially-constructed "norms" is deemed neurodivergent. (Nick Walker, "What is Neurodiversity?", Autistic UK).

neurotypical - a term used in the autistic community as a label for people whose neurological development and state are consistent with what most people would perceive as "normal" in their ability to process linguistic information and social cues. In simple terms, it describes those who are not on the autism spectrum. People with ADHD and other types of neurodevelopmental disorders might or might not meet the definition of "neurotypical" as well (We Rock the Spectrum, "25 Words to Know").

"on the spectrum" -

X - DO NOT SAY THIS - X

This phrase is offensive slang used "to describe people who have trouble socializing, communicating, or empathizing," and is primarily an insult (Mic.com). If someone is autistic, simply state that they are autistic. But if one is unsure if someone is autistic, do not say this. ESPECIALLY do not use this phrase to describe someone who is "socially awkward" or who moves or behaves differently.

--- Mic.com, "Here's Why We Absolutely Need To Stop Using The Term "On The Spectrum"

executive functioning - also called self-regulation, "these skills are the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully...the brain needs this skill set to filter distractions, prioritize tasks, set and achieve goals, and control impulses" (Center on the Developing Child, Harvard University).

high / low-functioning -

X - DO NOT USE THESE TERMS - X

Outdated terminology used to attempt to describe the degree to which an autistic person's skills, personality, or behaviors enabled their ability to "function" among neurotypical society. People who are "high-functioning" are considered to be the closest to neurotypical, and people who are low-functioning are furthest. However, the terms are ill-fitting and do not describe "a person's level of intelligence, special abilities, anxiety, perseveration, aggression, or sensory challenges." They also do not describe how the person will perform in a school environment, a job, or how they will behave in a public venue. They will not describe the likelihood of a person experiencing a meltdown, either. Overall they are not clinically-accepted terms, and should not be used to broadly describe or determine an autistic or neurodivergent person's abilities (VeryWell Health, "Differences Between High- and Low-Functioning Autism").

savant - to have detailed knowledge in a specialized field. A small percentage of people with autism are savants. Savants may have many different skills not specific to one field (We Rock the Spectrum, "25 Words to Know").

splinter skills - A skill that is stronger than the other skills a person has. A person with autism might be able to do one or more things really well but have far less ability in other areas (We Rock the Spectrum, "25 Words to Know").

--- VeryWell Health, "What are Splinter Skills in Autism?"

sensory processing disorder (SPD) - A neurological condition that exists when sensory signals are not adequately processed in order to appropriately respond to the demands of the environment. For example, many people with sensory processing disorder are highly sensitive to fabrics and certain food textures (We Rock the Spectrum, "25 Words to Know").

meltdown - Often mistaken as temper tantrums or panic attacks, meltdowns are common with people who have autism and are typically not anger-infused. Instead, it is the body’s way of reacting to a confusing or over-stimulating situation. Meltdowns can be loud or they can be very quiet (We Rock the Spectrum, "25 Words to Know")

stimming - repetitive or unusual movements or noises to help regulate emotions and overwhelming situations. (Raising Children).

echolalia / scripting - This is the repeating of sounds, words, or phrases. People who “echo” may not always be able to communicate effectively or express their own thoughts, but they parrot back what they have heard. If asked a question, they might repeat the question and not answer the question. Sometimes referred to as scripting (We Rock the Spectrum, "25 Words to Know")

perseveration - Repeating or persisting with an action or behavior after the stimulus that prompted it has ceased. To perseverate is to become stuck on something and to not be able to mentally shift gears (We Rock the Spectrum, "25 Words to Know").

transition - A change from one environment or activity to another. Transitions can be hard for a person with autism. It sometimes helps if warnings are given before a transition (We Rock the Spectrum, "25 Words to Know").

Image courtesy of: Sue Larkey Blog

From Nick Walker, "The Neurodiversity Paradigm," Autistic UK

"Neurodiversity is the diversity of human brains and minds, the infinite variation in neurocognitive functioning within our species."

"The idea that there is one “normal” or “healthy” type of brain or mind or one “right” style of neurocognitive functioning, is no more valid than the idea that there is one “normal” or “right” gender, race, or culture.
The classification of neurodivergence (e.g. autism, ADHD, dyslexia, bipolarity) as medical/psychiatric pathology is not a medical diagnosis, but instead reflects cultural prejudice and oppresses those labeled as such."

"The Neurodiversity Movement has its origins in the Autistic Rights Movement that sprung up in the 1990’s. The term neurodiversity was coined in 1998 by an autistic Australian sociologist named Judy Singer, and was quickly picked up and expanded upon within the autistic activist community."

 

• About 1 in 54 children in the United States has been identified with autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network (2016).

 

• Prevalence of autism in U.S. children increased by 119.4 percent from 2000 (1 in 150) to 2010 (1 in 68). (CDC, 2014) Autism is the fastest-growing developmental disability. (CDC, 2020)

 

• About 1 percent of the world population has autism spectrum disorder (CDC, 2014). That's about 7 million people: for comparison's sake, that's a little less than the entire population of Hong Kong...or just a little more than the entire populations of Ireland and Puerto Rico combined.

 

• Autism is more than 4x more common among boys than girls - however, this ratio is up for debate as to whether it's a genuinely biological / psychological difference between sexes, or if it has more to do with how autism is detected and diagnosed (Spectrum News, "Autism's sex ratio, explained"). For example, according to Spectrum News, "girls and women with autism may go undiagnosed because doctors, teachers, parents and others often think of the condition as primarily affecting boys."

  The History and Origins of Autism Spectrum Disorder (ASD) 

Largely derived from "How Autism Became Autism" by Bonnie Evans

Neurodivergence, specifically autism, has seemingly existed since the dawn of mankind, according to theorists and archaeologists (Psychology Today, "Were the Timekeepers of the Ancient World Autistic?").

Records dating back to the early 1800's in the United States describe people who displayed neurodivergent behaviors, and speculate that they might have been autistic (Smithsonian, "The Early History of Autism in America").

The concept of autism was coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a concept he had also created. The word autism comes from the Greek word autós, or "self" in English (Wikipedia, "Autism"), and is meant to describe individuals who "[seek] to avoid unsatisfying realities and replace them with fantasies or hallucinations." The word "autistic" was applied to anyone who met these qualifications from the 1920s through the 1950s.

In the 1960s, child psychologists challenged the diagnosis Bleuler had originally conceived, and from the mid-1960s onward "autism" meant the exact opposite of what Bleuler had originally defined it as. Autism now referred to "a complete lack of an unconscious symbolic life."

"Autism came to be associated with ‘profound [intellectual disability] and other developmental or physical disorders’, thereby increasing the number of children who were considered to display autistic traits."

In 1987 the American Psychiatric Association's Diagnostic and Statistical Manual (DSM) replaced "infantile autism" with a more expansive definition of "autism disorder," and includes a checklist of diagnostic criteria. UCLA psychologist Ivar Lovaas, Ph.D., published the first study showing how intensive behavior therapy can help children with autism--thus giving new hope to parents (Parents, "A Timeline of the History of Autism").

In 1994, Asperger's Syndrome was added to the DSM, expanding the autism spectrum to include milder cases in which individuals tend to be more highly functioning. It was later folded under the Autism Spectrum Disorder (ASD) umbrella diagnosis and no longer considered a separate condition in 2013. ASD is defined by two categories: 1) Impaired social communication and/or interaction. 2) Restricted and/or repetitive behaviors (Parents, "A Timeline of the History of Autism").

In November 2015, the U.S. Centers for Disease Control and Prevention reported a new estimate of the prevalence of autism in children ages 3 to 17. The figure, 1 in 45, is the highest ever announced by the CDC, up from 1 in 150 in 2007 (Smithsonian, "The Early History of Autism in America").

  The "Vaccines Cause Autism" Myth  

Because the way autism is diagnosed has radically changed over the past few decades, some people believe we are in the middle of an autism "epidemic." This in turn caused people to believe something must have recently occurred to "cause" autism diagnoses to go up. Some activists believe that modern vaccines are the culprit (Smithsonian, "The Early History of Autism in America").

This myth has since been disproven, but the harm it caused still exists today.

In 1998, British journal The Lancet published a study which suggested a connection between the MMR vaccine and autism. As a result of this publication, anti-vaccination, or "anti-vax / anti-vaxxer" sentiment grew. MMR vaccination dropped in Europe from 91% in 1995 to 80% in 2004 (NOVA, "The Autism-Vaccine Myth"). The lead scientist behind the publication, Dr. Andrew Wakefield, mentioned in an interview in 1998 that he "felt" there was a connection between the combination MMR vaccine and pervasive development disorder (autism).

In 1999, the U.S. Food and Drug Administration reviewed the vaccine preservative thimerosal, which contains mercury. While they found "no evidence" of it causing harm, they advised for its removal. In 2001 it was removed from childhood vaccines in the U.S. market (NOVA). Numerous studies came out disproving the findings in the 1998 Wakefield study.

In 2004, 10 of the 13 scientists involved in the 1998 Wakefield study submited a retraction of the paper's ideas, stating that the paper does not establish "a casual link" between the MMR vaccine and autism (NOVA). A separate study published in the New England Journal of Medicine in 2007 again found no association between the MMR vaccine and "neurophysiological outcomes."

In 2010, "The Lancet, after an extensive investigation, including investigative work by journalist Brian Deer, issues a formal retraction of the 1998 Wakefield paper" (NOVA). The British General Medical Council (GMC) found "that Wakefield had been dishonest in his research, had acted against his patients' best interests and mistreated developmentally delayed children," and for that he was stripped of his title (GMC, "Fitness to Practice Panel Hearing).

In 2013, "a major measles outbreak in Wales is linked to regional response to the 1998 Wakefield paper, which led to reduced measles vaccination rates in the region affected by the outbreak." (NOVA). Please see the below chart for the trends in pediatric vaccination following the 1998 Wakefield paper.

 

Image description: As a result of a paper published in 1998, MMR vaccination rates dropped Europe. The dotted line indicates the year in which Wakefield and colleagues published a paper alleging a connection between the MMR vaccine and autism (NOVA).