Terminology

Autism spectrum disorder is a group of complex conditions related to brain development, according to the National Institute of Mental Health. Common symptoms of autism include difficulties in communication, impaired social interaction and restricted and repetitive patterns of behavior, interests or activities, according to the Institute. However, symptoms vary across the spectrum. Many experts classify autism as a developmental disability.

Prior to 2013, subtypes of autism, such as Asperger’s syndrome, autism and childhood disintegrative disorder, were classified as distinct conditions. The fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders consolidates all autism conditions under the larger autism spectrum disorder diagnosis.

Opinions vary on how to refer to someone with autism. Some people with autism prefer being referred to as “autistic” or an “autistic person.” Others object to using autistic as an adjective. The Autism Self Advocacy Network details this debate.

Cerebral palsy refers to a number of neurological conditions that appear in infancy or early childhood and permanently affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Stroke. It is not caused by problems in the muscles or nerves but by differences in parts of the brain that control muscle movement. People with cerebral palsy can exhibit a variety of symptoms. Spastic cerebral palsy is a common type of cerebral palsy in which the movements of people with the condition appear stiff and jerky.

The Centers for Disease Control defines developmental disabilities as “a group of conditions (that arise) due to an impairment in physical, learning, language or behavior areas. These conditions begin during the developmental period of life, may impact day-to-day functioning, and usually last throughout a person’s lifetime.”

By definition, developmental disabilities manifest before age 22. Those with such disabilities often require lifelong or extended support. Examples of developmental disabilities include autism spectrum disorder, spina bifida, cerebral palsy and intellectual disabilities. Legal definitions vary from state to state. A developmental disability can include a long-term physical or cognitive/intellectual disability or both.

“Disability” and “disabled” generally describe functional limitations that affect one or more of the major life activities, including walking, lifting, learning and breathing. Various laws define disability differently.

Down syndrome is a congenital condition caused by the presence of an extra full or partial copy of chromosome 21 in an individual’s cell nuclei. It was first reported in 1866 by Dr. John Langdon Down and is characterized by a range of physical and cognitive characteristics, which the National Institutes of Health details. Down syndrome is the most common chromosomal condition.

Other terms commonly used to refer to people with Down syndrome include “intellectually disabled,” “developmentally disabled” and a person who has a “cognitive disability” or “intellectual disability.” The Global Down Syndrome Foundation considers all of these terms acceptable, while the National Down Syndrome Society suggests using “cognitive disability” or “intellectual disability.” Down syndrome also can be referred to as Trisomy 21. Historically it was called “mongoloidism,” and people with it were called Mongoloids; this is now considered offensive.

Epilepsy is a chronic neurological and developmental condition characterized by “recurrent, unprovoked seizures,” according to the Epilepsy Foundation. Originally called “falling sickness” in English, the word has roots in Greek and Latin.

Epilepsy manifests differently in individuals: The severity of epileptic seizures, their occurrence rates and the emergence of other health problems differ from person to person. Epilepsy is most commonly treated with medication but treatment also can include use of medical devices, surgery, diet and emerging therapy methods.

WebMD explains the difference between epilepsy and seizures in this way: “Seizures, abnormal movements or behavior due to unusual electrical activity in the brain, are a symptom of epilepsy. But not all people who appear to have seizures have epilepsy, a group of related disorders characterized by a tendency for recurrent seizures.”

Facilitated communication is a widely criticized communication technique that was popular in the 1990s. The technique was originally developed to help those with significant developmental disabilities, such as some forms of autism and cerebral palsy. A nonverbal person would theoretically communicate with the help of a facilitator by typing on a keyboard, pointing to an image, or pointing to letters on an alphabet board. However, academics eventually found there was little scientific evidence that the technique worked, leading many to conclude the aide was actually the one communicating, according to a study from Emory University.

In an official position statement, the American Speech-Language-Hearing Association warns that any messages extracted from facilitated communication “should not form the sole basis for making any diagnostic or treatment decisions.” Other organizations, including the American Psychological Association and the International Society for Augmentive and Alternative Communication also oppose facilitated communication. However, some people still strongly support the method.

It is important to note that “augmentative and alternative communication” – a general term used to refer to alternative methods that allow for written and spoken expression – is considered very different from facilitated communication. It is widely viewed as legitimate and important.

According to the National Human Genome Research Institute, a genetic disorder is “caused in whole or in part by a change in the DNA sequence away from the normal sequence. Genetic disabilities can be caused by a mutation in one gene (monogenic disorder), by mutations in multiple genes (multifactorial inheritance disorder), by a combination of gene mutations and environmental factors, or by damage to chromosomes (changes in the number or structure of entire chromosomes, the structures that carry genes).”

Some of the more common genetic conditions include cystic fibrosis, Huntington’s disease, and sickle cell anemia.

A genetic condition is congenital, but a congenital condition is not necessarily genetic. The Genome Research Institute offers comprehensive information about different genetic conditions, genetic testing and other pertinent topics.

““High functioning” and “low-functioning” are terms used to describe ability levels for people with a variety of conditions, including neurodiversity, intellectual disabilities and mental illness. Many people with intellectual disabilities and their advocates consider these terms to be dismissive or reductive of a person’s abilities. For example, “emotional intelligence” also is important when considering a person’s overall intelligence, according to the American Psychological Association.

Journalists should consider other ways of describing a person’s ability to function in society. For example, they might say that an individual with Down syndrome lives with minimal or no extra assistance.

The term “high-functioning autism” is widely used but is not a medical diagnosis, and many consider it offensive.

Identity-first language contrasts with people-first language. With identity-first language, the disability is mentioned first. For example, “Down syndrome girl” or “autistic boy.” An example of people-first language is “a girl with Down syndrome” or “a boy with autism.” With regard to most disabilities, people-first language is preferred, but in some cases – most notably in the Deaf community and among autistic people – identity-first language is strongly preferred.

An intellectual disability involves “significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills,” according to the American Association on Intellectual and Developmental Disabilities. There is debate over how relevant IQ tests should be in making a diagnosis.

According to the University of Kansas Research & Training Center on Independent Living, learning disability “describes a neurologically based condition that may manifest itself as difficulty learning and using skills in reading (called dyslexia), writing (dysgraphia), mathematics (dyscalculia) and other cognitive processes due to differences in how the brain processes information. Individuals with learning disabilities have average or above average intelligence, and the term does not include a learning problem that is primarily the result of another cause, such as intellectual disabilities or lack of educational opportunity.”

The terms “mentally retarded,” “retard” and “mental retardation” were once common terms that are now considered outdated and offensive. In 2010, President Barack Obama signed a measure known as “Rosa’s Law” that replaced the term “mental retardation” with intellectual disability in many areas of government, including federal law.

From “My Heart Can’t Even Believe It: A Story of Science, Love and Down Syndrome,” (Amy Silverman, Woodbine House, 2016):

“The word retarded has a slang-free history. For a long time, it simply meant slow.

According to the Oxford English Dictionary, it’s derived from the Italian word ritardato, and the first definition of the adjective version is ‘held back or in check; hindered, impeded; delayed, deferred.’

It’s traced to religion in 1636 (‘he to his long retarded Wrath gives wings’); to medicine in 1785 (‘Polypus, sometimes obstructs the vagina, and gives retarded labour’); and later to politics (‘Arguably, the legacy of communism manifests itself most acutely in the retarded economic development of the east’).

It also means ‘characterized by deceleration or reduction in velocity,’ as in a 1674 reference: ‘When it hath passed ye vertex ye motion changeth its nature, & turneth from an equably accelerated into an equably retarded motion.’

Actual references to retarded intelligence did not come until the turn of the 20th century, with the advent of the IQ test. Then numbers were assigned to words – not just ‘mentally retarded,’ but also terms like imbecile, idiot and moron.”

The Oxford English Dictionary defines neurodiversity as “the range of differences in individual brain function and behavioral traits, regarded as part of the normal variation in the human population (used especially in the context of autism spectrum disorders).” The word was coined in the late 1990s.

Neurodiversity basically means that brains operate differently – and that’s not a bad thing. There is an advocacy movement around this concept that argues against the idea that there is one ‘normal’ or ‘healthy’ type of brain or mind or one ‘right’ style of neurocognitive functioning.

“Neurotypical” refers to a person who is considered part of the normal variation in the human population.

It is important to note that some autism advocates do not like this term; it tends to be embraced by self advocates, but not as frequently by families of people with autism who also have intellectual disabilities and other challenges.

People-first language avoids defining people in terms of their disability. In most cases, this entails placing the reference to the disability after the reference to a person, as in “a person with a disability,” or “a person living with a disability,” rather than “the disabled person.”

People-first language is not preferred by all people with disabilities. Specifically, some members of the autism and Deaf communities prefer identity-first language.

The term “special needs” was popularized in the U.S. in the early 20th century during a push for special needs education to serve people with all kinds of disabilities. The word “special” in relationship to those with disabilities is now widely considered offensive because it euphemistically stigmatizes that which is different.

The term “special education” is still widely used when referring to public school programs, although some government entities use titles like “exceptional student services.”

The literal translation of “spina bifida” is “split spine,” according to the Spina Bifida Association. The condition is a neural tube defect that occurs when the spinal column does not close all the way in the womb. It is the most common neural tube defect in the U.S. There are four types of spina bifida. The Spina Bifida Association publishes a list of terms and definitions. Complications from spina bifida range from minor physical problems to significant intellectual and physical disabilities.

These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. Not every person with a disability suffers, is a victim or is stricken.

When renowned scientist Stephen Hawking died in 2018, media accounts referred to him as “finally free” of the wheelchair he used for decades. The references angered disability rights advocates, who argued that Hawking achieved remarkable success while using a wheelchair and a computerized voice system, not despite those devices.