Understanding Your Diagnosis
The first— and perhaps most important— step in self-advocating is understanding your diagnosis. When students understand how their brain works (both strengths and challenges), they can identify which supports help them learn, focus, organize, and manage stress. This self-awareness transforms self-advocacy from something that feels vague or uncomfortable into a practical tool for success. Instead of saying, “I struggle,” a student can say, “I have difficulty filtering background noise, so a quiet testing environment is essential.” This clarity is empowering not only for the student requesting the accommodations, but also serves to help instructors become better informed about student needs, and thus, more effective in their careers.
Self-advocacy requires recognizing that even when two students share the same diagnosis, it may look different and their needs can be different. ADHD and autism, especially, exist on a wide spectrum. Because of this variability, students are the true experts on themselves. Also, always remember that instructors are not disability specialists! They probably have had students in the past with your diagnosis and might assume that your needs are the same. They are also legally required to follow accommodation needs for students with disabilities; it saddens me to say that I have heard of instructors acting inconvenienced by this, but it happens. This is why it is so important that students understand that having a different learning or processing style does not make them any less deserving of being in a classroom than anyone else. One of the great lessons of adulthood is accepting personal agency and knowing that you have to take an active role in shaping your own success. Speaking up, setting boundaries, and requesting tools are essential not only in college environments, but also in the workplace, relationships, and throughout one’s life.
Meet the DSM (Diagnostic and Statistical Manual of Mental Disorders)
First, understand that “mental disorder” simply refers to patterns of thinking, feeling, or behaving that 1) Cause significant distress and/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— and what is considered acceptable behavior. You might be surprised to learn that psychological disorders vary by culture— there are behaviors and beliefs that are perfectly acceptable in one culture but will earn you a diagnosis in another. Also, how do we define “significant” distress? Isn’t that subjective as well? Where do we draw the line between normal human variances and a diagnosable condition? It’s also worth noting that in earlier versions of the DSM, women could be diagnosed with hysteria for being “trouble makers” and not conforming to social norms of the time, and a people were labeled as hypochondriacs when they presented with conditions yet to be understood. This diagnosis wasn’t removed from the DSM until 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. Medical diagnoses are considered categorical models— you either have a condition or you don’t.
Psychological diagnoses, conversely, are diagnosed by patterns of thought and behavior. If a person reports a certain number of behaviors that they believe impact functioning, a clinician chooses what he or she believes is the most likely diagnosis. It is not uncommon to receive different diagnoses from different clinicians, along with different treatment advice. (One of the most well-known and classic psychological studies, the “Rosenhan 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 occurrence of a single symptom of auditory hallucinations. Other than this one act of deception, the volunteers presented honestly, including their performance on psychological tests, life histories, and therapeutic interactions. 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.)
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 needs to only have 5 symptoms from a list, rather than the previously required 6.
Autism was not a named diagnosis until the third edition of the DSM, in 1980. In previous editions, symptoms associated with what we now call Autism Spectrum Disorder would have earned the diagnosis of “Schizophrenic, Childhood Type.” (For those who assert that ASD is on the rise and want to point a finger at vaccines or other external causes, remember that there was no such diagnosis until 1980, so of course the public never heard of it before then! Characteristics were exhibited, of course, since the beginning of humanity, and psychologists frequently assert that notable historical figures including Michelangelo, Isaac Newton, Mozart, and other exceptional people likely would be diagnosed with ASD today.) In 2013, the DSM-5 grouped Asperger’s, Autism, and Pervasive Developmental Disorders 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 below for diagnostic criteria).
The takeaway? Psychological diagnoses rely heavily on a clinician’s judgment, are context-dependent, and criteria is ever-evolving.
My Opinion
It may seem odd for a psychologist to critique psychological diagnoses. 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 regulation in persons with ADHD, and medication can be a godsend. There is also strong evidence that there is a genetic component to ADHD. However, it is important to remember that medication does not teach skills— it improves the brain’s capacity to use skills. Medication can improve attention, cognitive clarity, and mental stamina. Coaching improves habits, self-awareness, confidence, and independence. Unfortunately, as conditions become more familiar to the public, there is a tendency for a little knowledge to be dangerous. People who are talkative or energetic may be labeled as having ADHD, and it is a common go-to diagnosis when children exhibit any behavioral issues, without looking for alternative explanations. On the other hand, a person who is quiet or performs well academically might struggle needlessly because they do not fit the stereotypical model of ADHD.
With ASD, as the name suggests, there is a huge spectrum of presentations, which is challenging for some people to understand. 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. 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 obviously, most do not. 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 “awkward” or “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 neurotypical social behavior and experience stronger pressure to be emotionally responsive than boys).
As a psychologist, I recognize that humans are all unique and differences should be celebrated rather than pathologized. Personally, I do not like the term “disabled” to be thrown on someone just because they differ from the average. The world would be a very boring place if everyone was the same, and not being “average” is definitely not a bad thing. ADHD brains tend to be creative, curious, and innovative. People with ASD often master complex subjects faster than their peers, exhibit great attention to detail, and have a strong moral compass. However, I also acknowledge that there are distinct ways of perceiving and responding to the environment that are common enough to earn a classification and can make functioning in social constructs that favor the average person difficult and distressing. We all have to go to school. We all have to work to earn a living. To be successful in these environments and reach the goals we set, accepting that certain ways of learning and perceiving the world can be classified as “disabilities” allows accommodations to level the playing field. Below are the criteria for ADHD and ASD diagnoses. (These are not meant for self-diagnosis, but they are the symptoms a clinician would ask about in order to make a diagnosis.) Remember, everyone exhibits 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 aged 17 and older, at least 5 symptoms are necessary (this adjustment recognizes that ADHD symptoms often look different as people mature and coping strategies increase; while there are not different symptoms for diagnosing boys and girls, perhaps there should be, as diagnostic criteria were built from male samples*). Symptoms may be classified as mild, moderate, or severe based on intensity.
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
Impulsively blurts out before a question is completed or the other person stops talking
*A note about the differences in presentation of ADHD for boys and girls:
Early research of ADHD centered on what is most visible— hyperactive behaviors— because they tend to be disruptive in a classroom. Girls are often misdiagnosed with anxiety, depression, or a personality disorder because they tend to internalize struggles instead of acting out. They may develop perfectionism, experience anxiety and burnout, and mask symptoms. While not an exhaustive list, this is how ADHD often looks in boys and girls:
Boys: Hyperactive, impulsive, disruptive, externalize distress, behavior issues, and often referred early for a diagnosis.
Girls: Inattentive, internally restless, quietly struggling, internalizing distress, emotional dysregulation, anxiety, and often diagnosed late.
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 of how symptoms are expressed 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 well 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 absence 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).
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 television programs or movies repeatedly, reading the same book over and over).
Highly fixated interests that are unusual 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 a subject of interest).
Hyper- or hypo-reactivity to sensory input from the environment (e.g., reactions to pain, temperature, or specific sounds or textures, visual fascination with or sensitivity to lights or movement, discomfort with being touched).
