Unbroken: Accepting who you are and what you need

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What’s up with our personalities and behaviors? Many of us have a diagnosis that has something to do with the way our mind works—and if not, we probably know someone who does. It’s hard to hang out in the 21st century without encountering people who have attention deficit hyperactivity disorder (ADHD), bipolar disorder, anxiety disorder, obsessive compulsive disorder (OCD), depression, autism spectrum disorder (ASD), and other neuropsychological diagnoses.

These diagnoses can help us understand ourselves and figure out what helps us meet our potential. This might involve environmental supports (e.g., a quiet classroom), behavioral approaches (e.g., a mindfulness routine), some kind of therapy or life coaching, friends and partners who get it, or medication.

For some, though, the prospect of a diagnosis is problematic. A diagnosis may seem judgmental, stigmatizing, or overly simplistic. We may ask ourselves:

  • Does this mean I’m not “normal”? Can I be happy with myself as I am? Does this label me?
  • What should I do with my diagnosis?
  • How can it help me?

What’s “normal” & does it matter?

When does a personality trait or behavior become a diagnosis? “I think we are restraining what is perhaps a very normal spectrum of human personalities into a very narrow idea of what is normal,” says Deneil H., an undergraduate at Binghamton University in New York. In our student surveys, this was a common concern.

What we’re talking about is medicalization, “the idea that we’re turning all human difference into a disease, a disorder, a syndrome,” says Dr. Peter Conrad, professor of sociology at Brandeis University, Massachusetts. He specializes in “how conditions get to be called a disease and what the consequences are.”

In recent decades, the diagnostic criteria for many neuropsychological conditions have broadened. “More and more human behavior has been defined as a disorder, especially around the edges,” says Dr. Conrad. “Human problems are increasingly medicalized, especially sadness. Eleven percent of the population has ADHD, according to the CDC. At that rate, it’s something that’s fairly normal and not necessarily a pathology.” This does not mean medicalization is a bad thing; it has helped countless people access treatment and supports that work for them. There are pros and cons.

Like anything, medicalization has risks and benefits.

The risks of medicalization include:

  • Discomfort with the premise that there’s something wrong with us.
  • Neglecting to tackle relevant societal factors, such as discrimination and poverty, that prevent people from meeting their potential. “Medicalizing behavioral issues, like substance abuse, frames them primarily as individual problems as opposed to collective social problems,” says Dr. Peter Conrad, professor of sociology at Brandeis University, Massachusetts.

“I am concerned that other underlying issues may be ignored (the diagnosis could be an easy explanation for a more complicated problem).”
—Online student, State University of New York, Empire State College

The benefits of medicalization include:

  • Reducing any negative judgment attached to certain conditions.
  • Conditions defined as illnesses can be covered by health insurance, improving access to treatment and accommodations.

“It used to be thought that the devil had come to people with epilepsy, but with better medicines and reduced stigma, more people with epilepsy have been able to survive.”
—Dr. Conrad

Got neurodiversity?

Behavioral health and disability advocates are working to change the way that these conditions are understood. Their key point: Different kinds of minds come with different kinds of strengths (as well as challenges). Many unusual thinkers and innovators—people who may have been considered mentally ill, disabled, or eccentric—have made critical leaps in the sciences, arts, and technology.

The concept of neurodiversity acknowledges and helps us accept these natural human differences. “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general,” wrote journalist Harvey Blume, who introduced this idea to a mainstream audience in The Atlantic (1998); “Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.” The neurodiversity concept is particularly associated with autism, but embraces all other neuropsychological conditions too.

In the pro-neurodiversity model, the goal is to help us all thrive without judgment and negativity. “One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs,” wrote Steve Silberman in Wired magazine. Silberman is author of the award-winning book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (Avery, 2015).

How neurodiversity helps

Dr. Christina Nicolaidis, a professor at Portland State University, Oregon, is committed to a pro-neurodioversity approach in her clinical practice and academic research. She points to ways that this mindset supports us:

Valuing ourselves & accepting our needs

“A neurodiversity-based approach can be conducive to dealing with the dissonance between accepting yourself, understanding yourself, and being happy with who you are, while also acknowledging that you may need supports, accommodations, and medical treatments.”

Advocating for ourselves and others

“The neurodiversity movement sees people with disabilities as members of a minority group that have a right to be treated equitably. It encourages you to work towards reducing stigma and discrimination, to advocate for one’s legal rights, and to fight for equal access to health care and other services.”

Accessing health care & other supports

“In my clinical experience, a strengths-based and neurodiversity-type approach is extremely important for helping doctors understand, communicate with, and support their patients.”

“After finally being diagnosed with OCD and ADHD, I am so relieved and feel as though my life has had a totally positive change. I now have so much more freedom and control… When you find a medication that is right for you, you will know, because your life can be so positively different. I believe many people’s lives can be made so much better, but they are not seeking the help they need. No one knows what is normal and what is not; no one knows what goes on in others’ heads.”
—Undergraduate, Temple University, Pennsylvania

“For years I dealt with chronic depression and never knew that I had it. Had there been better education and an openness to discuss the various kinds of depression, I may have been able to get help earlier and could have prevented a significant time of my life not being able to live life to the fullest.”
—Fourth-year undergraduate, Kwantlen Polytechnic University, British Columbia

Access to medical and academic supports
“These conditions are probably under-diagnosed in students due to a general impression that certain feelings (e.g., symptoms of depression or anxiety) are ‘normal’ for being in school. The lack of a diagnosis may severely impact a student’s academic success and/or future (e.g., deciding to drop out of school because of constant anxiety). Identifying/diagnosing these conditions is providing appropriate help to those who need it and who could be successful (e.g., academically) if their condition was treated.”
—Graduate student, University of Massachusetts, Amherst

“Recognizing and titling a concern can be invaluable in feeling at peace with that disorder, recognizing its symptoms, and understanding how to manage it.”
—Second-year graduate student, University of Wyoming

Personal choice
“If people want to integrate better into society, then it should be their choice to take the meds.”
—Undergraduate, Humboldt State University, California

Reconciliation of strengths and struggles
“I feel like these ‘conditions’ are fundamental differences in us, that make us unique. People are not broken because they feel compelled to move, or because their minds get more distracted. Of course, it needs to be addressed. We can all use some practices to keep ourselves from acting on impulse.”
—Fourth-year undergraduate, Metropolitan State University of Denver, Colorado

Adjustment to big-picture changes
“The increasing diagnosing of neuropsychiatric conditions could be well within a normal response to our changing society. I am encouraged that there are people taking time out of their day to go seek help. That kind of behavior, at a minimum, will help us prepare for the future.”
—Fourth-year graduate student, Temple University School of Medicine, Pennsylvania

What is perceived to be the problem?
“The conspiracy theory behind doctors over-diagnosing something is that they are paid by the pharmaceutical companies, which is hopefully a bold lie.”
—Recent graduate, Kutztown University, Pennsylvania

“While it is important to consider that neuropsychiatric conditions are real issues people face, it is also important not to ‘textbook’ these people.”
—Fourth-year undergraduate, The College of New Jersey

On the other hand
It is inaccurate to say that physicians are paid to prescribe certain medications. Some physicians do work with pharmaceutical companies (for example, in developing new treatments), or receive gifts or samples from them.

A government website enables you to see any payments and other gifts your doctor or teaching hospital has received from pharmaceutical companies or medical device companies. The “Sunshine Act”—part of the Affordable Care Act (Obamacare)—requires transparency around these gifts and payments.

Is your doctor friendly with Big Pharma? Search here

Many of the challenges that come with disability are intrinsic to our society and culture, not to the disability itself.

“Imagine a world where 99 percent of people were deaf,” wrote Dr. Christina Nicolaidis, a physician and a professor at Portland State University, in the AMA Journal of Ethics (2012). “That society would likely not have developed spoken language. With no reason for society to curtail loud sounds, a hearing person may be disabled by the constant barrage of loud, distracting, painful noises… The deaf majority might not even notice that the ability to hear could be a ‘strength’ or might just view it as a cool party trick or savant skill.” She notes that homosexuality was considered a psychiatric condition until 1973.

“[This] reflects on society not working out for us, not [necessarily the] faultiness of the brain. Our culture is what needs to be diagnosed.”
—Second-year graduate student, Portland State University, Oregon

What’s the problem?
“Though there have been improvements to the diagnostic manual [the physicians’ guidebook to neuropsychological conditions], it is still limiting, vague, and left to be interpreted by the clinical professional.”
—Graduate student, San Diego State University, California

“As someone in the mental health field, there are cases in which people are misdiagnosed, or their symptoms are overpathologized or disregarded. A psychological assessment reflects a snap shot of that person at that particular time, and people’s functioning and circumstances can change. However, on the whole, as much as the conversation around mental health has increased, there are many people who are uninformed and therefore do not seek help when needed. Thus, I believe that [these conditions are] still under-diagnosed.”
—Fourth-year graduate student, University of Windsor, Ontario

On the other hand
The way that neuropsychological conditions are diagnosed and categorized is evolving in line with the research. This is also true of many physical health conditions.

Scientists and physicians now understand that what can look like the same neuropsychological condition likely reflects varying causes and biological mechanisms; for example, one person’s depression may involve different biological pathways than the next person’s. This is probably why people with the same diagnosis respond differently to medications and why a range of treatment options is needed. Similarly, the same biological mechanisms may present differently in people, resulting in varying diagnoses.

Consequently, federal research funding has shifted away from targeting diagnoses. Scientists are focusing instead on specific states of mind—such as anhedonia, a loss of pleasure—and specific biological processes.

Disability advocates diagnose “normality”

The term “neurotypical” arose in the disability community as a label for people who have typically-developing minds. Descriptions of “neurotypical syndrome” are satirical; they make the point that disability and “normality” can be a matter of perspective. For example:

Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.

Neurotypical individuals (NTs) often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups, NTs are socially and behaviorally rigid and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly.

Neurotypical syndrome is believed to be genetic in origin. As many as 9,625 out of every 10,000 individuals may be neurotypical. There is no known cure for neurotypical syndrome.

Source: The Institute for the Study of the Neurologically Typical (parody)

Diagnosing geniuses and celebrities, dead or alive, has become commonplace. In the absence of modern neuropsychological testing and openness on the part of the individual, such diagnoses are speculative—but in some cases the evidence is strong.

The super-scientists Albert Einstein (the theory of relativity) and Isaac Newton (the law of gravity) were probably autistic, according to a 2003 article in the Journal of the Royal Society of Medicine.

Thomas Jefferson, our third president, likely had Asperger syndrome (a form of autism), according to Norm Ledgin, author of Diagnosing Jefferson: Evidence of a Condition That Guided His Beliefs, Behavior, and Personal Associations (Future Horizons, 2000).

Richard Branson, businessman extraordinaire and founder of Virgin Group, has acknowledged in interviews that he has dyslexia and ADHD.

Sinead O’Connor has talked about her experience with bipolar disorder. Other candidates for this diagnosis include Kurt Cobain, Marilyn Monroe, Vincent Van Gogh, and Emily Dickinson.

Actor Leonardo DiCaprio, who has OCD, played Howard Hughes, who also has OCD, in The Aviator. “He let his own mild OCD get worse to play the part,” said the psychiatrist who advised him on set (speaking to Scotland on Sunday, 2005).

“The more we learn about the spectrum of neuropsychiatric behaviors in humans, the better we can regulate conditions that may pose a risk to a person’s ability to function. [That said,] I am concerned that there’s an overemphasis on what’s ‘normal’ when we ought to celebrate our differences in varying capacities.”
—Second-year graduate student, Boise State University, Idaho

Spoon Theory

My friend is “running low on spoons.” What does that mean?

Your friend is running out of energy for reasons relating to a disability or health issue—maybe a condition that isn’t visible to others. In the “spoon theory” analogy, spoons represent emotional and physical energy. We start each day with a fixed number of spoons and every action uses some of them up. The more demanding the task, the more spoons it requires. “I’m running low on spoons” is a way to tell friends and family that you need to postpone your plans for the evening (for example). It can help others appreciate when you’re flagging for reasons related to sensory overload, chronic pain, or other challenges.

Sources: Christine Miserandino, https://goo.gl/QKtK44, The Guardian (2012)

[survey_plugin] Article sources

Peter Conrad, PhD, professor of social sciences, Brandeis University, Massachusetts.

Ari Ne’eman, co-founder, Autistic Self Advocacy Network, Washington DC., Former Obama-appointed member, National Council on Disability.

Christina Nicolaidis, MD, MPH; professor in social determinants of health, Portland State University, Oregon; co-director, Academic Autistic Spectrum Partnership in Research and Education (AASPIRE).

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Student Health 101 survey, February 2015.

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