Redefining “Disability”
“Disability” is a funny word. Not “ha-ha” funny, but rather, curious in the weight it carries and meanings people attach to it. During my career, I have seen the Diagnostic and Statistical Manual of Mental Disorders (DSM) go through a revision from version 4 to version 5, and I have reviewed earlier versions of the manual and the many iterations it has gone through. (The first version, FYI, was published in 1952.) I have seen people (usually those without a disability) argue vehemently for “person-first” language because they say it makes the disability a condition rather than a defining trait. I have also read academic theorists who support “identity-first” language because it asserts the disability is part of a person’s identity and not something to be ashamed of. Additionally, those who favor “identity-first” language point out that it is the environment that is disabling, not the person’s difference. (If a person uses a wheelchair, for instance, and a building only has stairs to the front door, they are unable to enter the building because it was not designed with their ability in mind. If there is a ramp, they are able to enter, and therefore, no longer disabled by the building design.) Ultimately, it’s a personal decision of how one wants to present their condition (or if they want to disclose it at all). Semantics aside, I believe it’s worthwhile— especially if you have been given a diagnosis that is considered a disability— to understand exactly what that means.
Mental Disorders
First, understand that “mental disorder” simply refers to patterns of thinking, feeling, or behaving that 1) Cause significant distress or impairment in functioning, and 2) Deviate from what is culturally and developmentally expected.
It isn’t hard to see how this definition can be problematic. Culture is ever-evolving and varies dramatically by geography. Our environment impacts our belief system so significantly that it shapes our perceptions of ourselves and others. Growing up in a large family would reasonably affect one’s disposition, social skills, tolerance for noise and crowds, preference for solitude, and often positions our identity in relation to others (“the baby of the family,” “the responsible one,” etc.) in very different ways than being an only child would. Being raised in a rural setting versus a city environment would likely impact a person’s acceptance of social diversity, general stress level, comfort around animals, and so on. You might be surprised to learn that psychological disorders vary by culture— there are groupings of behavior or beliefs that are perfectly acceptable in one culture but will earn you a diagnosis in another. Also, how does one define “significant distress” or “impairment”? Isn’t that subjective as well? Where do we draw the line between normal human idiosyncrasies and a diagnosis/disabling condition? And, while we’re on the subject of defining individual differences, it’s worth noting that in earlier versions of the DSM, homosexuality was included as a mental pathology, women were diagnosed with hysteria for being “troublemakers” (i.e., not conforming to social norms of the time), and a people were often labeled as hypochondriacs so medical doctors did not have to say, “I don’t know.” This diagnosis wasn’t removed until the DSM-5 publication, in 2013.
Psychological vs. Medical Diagnoses
In medicine, diagnoses are usually based on objective biological evidence, such as blood tests, biopsies, X-rays, etc. Diabetes, for example, can reliably be diagnosed by measuring glucose levels. There is a clear treatment regimen and a predictable outcome if prescribed care is not followed. Medical diagnoses are considered categorical models— you either have pneumonia or you don’t.
Psychological diagnoses, conversely, are diagnosed by patterns of behavior. If a person has a certain cluster of behaviors— and they significantly impact functioning— a clinician chooses the most likely diagnosis, based on his or her impression. It is not uncommon to receive different diagnoses from different clinicians, and different treatment advice. (One of the most well-known and classic psychological studies, the “Rosenhan Experiment,” also called the “Thud” experiment, examined the reliability of psychiatric hospital staff and the impact of context in interpretation bias. Between 1969 and 1972, eight healthy volunteers with no history of psychiatric illness presented themselves at various mental hospitals in five states on East and West coasts. Each volunteer falsely reported a single symptom of auditory hallucinations— hearing the word “thud,” for example. Other than this one act of deception, the volunteers presented honestly, including their performance on psychological tests, life histories, and therapeutic interactions. All eight people were admitted to the psychiatric hospitals and kept for durations ranging from seven to fifty-two days. After admission, all volunteers acted normally, said they no longer heard voices, and attempted to persuade staff that they no longer needed hospitalization. Most hospital personnel described these volunteers as “severely abnormal.” Once they had been labeled as having mental illness, the perception of such did not go away, even when the abnormal behavior was no longer present.)
The takeaway? Mental health diagnoses rely heavily on clinical judgment, which is subjective.
ADHD and Autism Spectrum Disorder (ASD)
You may have heard people say, “I have ADD,” or “I have Asperger’s.” In 1980, Attention Deficit Disorder (ADD), was introduced into the DSM-III, and for many people, the term stuck. In 1987, ADD was renamed “Attention-Deficit/Hyperactivity Disorder” (ADHD), and combined inattention and hyperactivity into a single symptom domain. In 1994, ADHD was broken into three subtypes: Inattentive, Hyperactive-Impulsive, and Combined type. In 2013, these subtypes were reclassified as “presentations” and acknowledged that they can change over time. The age of onset as a criteria for diagnosis was increased from “before age 7” to “before age 12.” To be diagnosed as an adult, one now needed to only have 5 symptoms from a list, rather than the previously required 6.
Autism was not a specific diagnosis until the third version of the DSM, in 1980. Previously, in the DSM-I in 1952 and the DSM-II in 1968, symptoms associated with what we now call Autism Spectrum Disorder would have earned the diagnosis of “Schizophrenic, Childhood Type.” (For those who lament that ASD is on the rise and want to point a finger at vaccines or Tylenol, remember that there was no such diagnosis until 1980! People exhibited symptoms, of course, and psychologists frequently assert that notable historical figures including Albert Einstein, Nikola Tesla, Michelangelo, Isaac Newton, Mozart, Beethoven, and other exceptional people likely would be diagnosed with ASD today.) In 2013, the DSM-5 grouped Asperger’s, Autism, and Pervasive Developmental Disorders (PDD) under one umbrella called “Autism Spectrum Disorder.” It removed “language delay” as a requirement. It did not prohibit ADHD and ASD from co-existing (before 2013, an individual could only be diagnosed with one or the other). Symptoms were condensed into two domains (see footnote for a list of potential symptoms and diagnostic criteria).
My Take
It may seem ironic for a psychologist to express skepticism over mental disorders. That is not the message I am trying to convey, nor am I implying that ADHD, ASD, and other conditions are “made up.” There are definite differences in neurotransmitter patterns in persons with ADHD, and medications can be a godsend. There is also strong evidence that there is a genetic component to ADHD. However, it is important to remember that EVERYONE experiences distraction, restlessness, and impulsivity at times. ADHD presents differently in males and females, and can look different at different ages. Unfortunately, as conditions become more familiar to the public, there is a tendency for a little knowledge to be dangerous. People who are very talkative or energetic may be labeled as having ADHD, and it is a common go-to diagnosis when children exhibit any behavioral issues, which, obviously, could stem from a myriad of causes. On the other hand, a person who is quiet or performs well academically might struggle needlessly because they are not identified as fitting the stereotypical model of ADHD.
With ASD, as the name suggests, there is a huge variation (a spectrum) of presentations, which is challenging for some people to understand. Medical models categorize diseases as present or absent; a person isn’t “a little diabetic.” Many people first heard of autism when the movie Rain Man was released in 1988 and Dustin Hoffman’s character (“Raymond”) was able to win big in Las Vegas by counting blackjack cards. Like all movies, Rain Man needed to be simple enough to appeal to and make sense to laypersons, it needed to be a bit sensational, and it needed to tell a story in about two hours. Raymond exhibited an exceedingly rare (affecting about 1 in one million people) condition known as “savant syndrome.” Sometimes, people with ASD can exhibit savant abilities, but most do not (ASD is present in about 1 in 36 individuals; quite unlike the 1 in 1,000,000 who exhibit savant syndrome.) Savant abilities, also called “splinter skills,” or “islands of ability,” often show up as remarkable musical ability, rapid mental calculation, or extraordinary artistic talents. (Interestingly, savant syndrome can also appear following a brain injury.)
While it would be nice if the stereotype for autism was that a person must be insanely talented, unfortunately, it tends to be stigmatized. Calling someone “on the spectrum” is usually a euphemism for “weird.” And, as its diagnosis relies on the presence of a set of behaviors, “masking” those behaviors can seem easier than trying to explain to people what ASD really entails (a very common practice with girls, who may be more adept at recognizing and mimicking “normal” social behavior and experience stronger pressure to be emotionally responsive and socially skilled than boys).
As a psychologist, I recognize that humans are remarkable, unique, fascinating, and these difference should be celebrated rather than pathologized. I do not like the term “disabled” to be thrown on someone just because they differ from “the norm.” The world would be a very boring place if everyone was the same. However, I also recognize that there are distinct ways of behaving, perceiving, and responding to the environment that are common enough to show up as co-occuring tendencies and can make functioning in social constructs that favor “the norm” difficult and distressing. We all have to go to school. We all have to work to earn a living. To be successful in these endeavors and reach the goals we set, acknowledging that a set of symptoms can be classified as a “disability” can be the difference that legally allows small tweaks (i.e., accommodations) to level the playing field between exceptional people and the approximately 70% of the population considered “typical.” Below are the criteria for ADHD and ASD diagnoses. (These are not meant for self-diagnosis, but they are the symptoms an examiner would ask in order to make a diagnosis.) Remember, everyone exhibits all of these behaviors at some point; they warrant a diagnosis when the required number of them are persistently present and impact functioning.
DSM-5 Diagnostic Criteria for ADHD and ASD
For a diagnosis of ADHD, symptoms/behaviors must have persisted at least 6 months in at least 2 settings (e.g., home, school, work, etc.). These symptoms must have negatively impacted academic, social, and/or occupational functioning. For individuals under 17 years, at least 6 of the following symptoms are necessary; for those over age 17, at least 5 symptoms are necessary. Symptoms may be classified as mild, moderate, or severe based on severity.
Displays poor listening skills
Loses and/or misplaces items needed to complete tasks
Sidetracked by external stimuli
Forgets daily activities
Diminished attention span
Lacks ability to complete schoolwork or other assignments/projects
Avoids or is disinclined to begin schoolwork or activities requiring concentration
Fails to focus on details
Makes thoughtless mistakes in schoolwork or other assignments/projects
Fidgets with feet/hands, or moves a lot while seated
Restlessness that is difficult to control
Appears often “on the go”
Lacks ability to engage in leisure activies in a quiet manner
Difficulty staying seated for long stretches
Overly talkative
Difficulty waiting one’s turn
Interrupts or intrudes into conversations and/or activities
Impulsivesly blurts out before a question is completed or the other person stops talking
With Autism Spectrum Disorder, there are two domains— social and behavioral. For a diagnosis of ASD, all of the 3 social symptoms must be present and two of the behavioral symptoms must be present. (Note: these examples are illustrative, not exhaustive.) Symptoms must be present during childhood, but may not fully manifest until social demands exceed capacities, or may be masked by learned strategies.
Social (all 3):
Social-emotional reciprocity deficits. This can look like difficulty holding a back-and-forth conversation (not knowing what to talk about or rehearsing what to say in advance of a conversation), reduced sharing of interests or emotions, or failure to initiate or respond to social interactions.
Nonverbal social communication is lacking. This can present as poorly integrated verbal and nonverbal communication, poor eye contact, difficulty understanding body language or the use of gestures, or a lack of facial expression (“hard to read”).
Difficulty developing, maintaining, and/or understanding relationships. This can look like difficulty adjusting behavior to suit various social contexts, an absense of interest in peers, or difficulty in sharing imaginative play or making friends. A person may be described as “blunt,” “harsh,” or offend others without meaning to.
Behavioral (at least 2):
Repetitive movements, use of objects, or speech (e.g., idiosyncratic phrases, lining up toys, repeating words or phrases, either immediately after hearing them or hours, days, or weeks after hearing them).
Preference for sameness, adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., distress at small changes in their home environment, difficulties with transitions, rigid greeting or farewell rituals, a need to eat the same foods or take the same route every day, watching the same television programs or movies repeatedly).
Highly fixated interests that are abnormal in intensity or focus (e.g., strong attachment or preoccupation with/collecting unusual objects, an excessive interest in a particular subject, desire for attaining a deep reserve of knowledge about this subject of interest).
Hyper- or hyporeactivity to sensory input from the environment (e.g., reactions to pain, temperature, adverse response to specific sounds or textures, visual fascination with lights or movement, discomfort with touching others).