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Autism

In Praise of the Spectrum

The decline of stigma, and how autism led the way.

In one of my classes earlier this year, a student described how hard it had been for her to get treatment for attention-deficit/hyperactivity disorder (ADHD) when she was struggling in high school. Her father told her she wasn’t working hard enough. She begged to see a therapist but had to wait until she went to college to act on her own. With no hint of shame, she told the class: “Getting diagnosed with ADHD was one of the best days of my freshman year because someone actually saw that I wasn’t stupid or lazy, that I just needed treatment.”[1]

Another student in the class, an advocate for neurodiversity, the movement that argues cognitive differences are a natural and positive part of human variation, wore a T-shirt that read: “I hate normal people.”

Students and colleagues occasionally accuse me of being overly optimistic, but I can’t help interpreting such comments as a sign that millennials are successfully challenging the stigma and silence that have for so long shadowed mental illnesses. Despite the fact that the majority of people with a mental illness in the United States still receive no mental health treatment, mental illnesses are fast becoming a more accepted and visible part of life.[2] In fact, many of the people we most admire—celebrities like Lady Gaga and swimmer Michael Phelps, for example—speak publicly about their emotional struggles.

Why millennials? And why now?

I can’t pretend to have all the answers, but I’m confident about two of them. First, because most psychiatric conditions have their onset in adolescence or early adulthood, younger people’s experiences with mental illness will reflect changing attitudes in their community or among mental health care professionals. They are on the front lines facing any new diagnostic ideas.

Second, the new diagnostic idea they meet is the recognition among advocates and scientists that mental illnesses are spectrums rather than discrete disorders, and that we all lie somewhere on a continuum of suffering. There is, embedded in the idea of a spectrum, the notion that mental illnesses are an integral part of the human condition.

Pioneering researchers like Lorna Wing, Judith Gould, and others first introduced the idea of an autism spectrum more than four decades ago, and in the last decade, neurodiversity advocates have pushed forward, reframing autism as a spectrum that can account for enormous variation among people with a range of strengths (such as skill in the arts, mathematics, and computer technology) and challenges in social communication, from the very mild to the very severe. Scientists demonstrated that mild symptoms of autism are common in the general population and that family members of a person with autism often exhibit autistic traits. Yet only that one person may actually have the diagnosis, either because they need some sort of treatment or because the diagnosis drives an intervention like special education.

With autism, as with many medical conditions—like hypertension and obesity—the boundary lines are drawn more by culture than by nature. Dividing human differences into distinct illnesses (or even genders) is like dividing up the color spectrum into distinct colors. While most of us can easily tell the difference between yellow and orange, we probably can’t agree on exactly where yellow ends and orange begins, because there is no single point at which one becomes the other. Similarly, the border between health and sickness is the judgment call we make about whether a person’s symptoms are impairing their lives and warrant treatment.

Yet for decades, during the time the DSM-III (1980–94) and DSM-IV (1994–2013) were in use, researchers and clinicians tended to talk about mental illnesses in categorical terms—one either had or did not have a particular mental illness. In the wake of social movements that promote nonconformity—like neurodiversity and the transgender rights movement —the DSM-5 has now (2013-present) added a dimensional scoring component. The manual still uses names and categories to conceptualize groups of symptoms, to justify treatments and accommodations in work or school, and to prevent insurance fraud. But the dimensional model encourages clinicians to pay more attention to describing the severity and dynamics of a patient’s various symptoms over time than assessing whether a patient meets every criterion for a specific disorder.

What’s more, the DSM-5 now classifies all the major diagnoses as spectrum disorders (e.g., the schizophrenia spectrum, bipolar spectrum, and obsessive-compulsive spectrum), as happened with autism more than a decade ago. “Like most common human ills,” the DSM-5 states, “mental disorders are heterogeneous at many levels, ranging from genetic risk factors to symptoms.”[3] As one leading epidemiologist put it, “there is no evidence for the existence of true discrete mental illnesses that account for the patterns among symptoms in dimensional assessments.”[4]

These days, I sometimes hear someone describe their attitudes towards cleanliness as “a little OCD.” I don’t think they are saying they actually meet the DSM criteria for obsessive-compulsive disorder. Nor do I think they are minimizing how severe the condition can be. But by putting themselves on the spectrum, they are rejecting the illusion of “normality.” The spectrum, a hallmark achievement in the history of mental health, is an invitation to join the rest of the world on a continuum. It asks us to say, along with neurodiversity advocates, that both normality and abnormality are fictional lands no one actually inhabits.

Recently, I reeled off some prevalence estimates for my students: For example, 8-9 percent of American children have ADHD; 8–10 percent of children have an anxiety disorder; 2.5 percent of adults have bipolar disorder; 11 percent of 18- to 25-year-olds have major depression.

A student asked in jest, “Isn’t anyone normal anymore?”

I answered, “No. Nobody’s normal. Normal is just a concept we use to stigmatize certain kinds of differences.”

The class nodded in agreement. They already knew.

References

[1] College students and adolescents increasingly disclose psychiatric symptoms on social media. See, for example: Moreno, Megan A., et al. 2011. “Feeling Bad on Facebook: Depression Disclosures by College Students on a Social Networking Site.” Depression and Anxiety 28: 447–55; Mulfinger, Nadine et al. 2019. “Secrecy versus Disclosure of Mental Illness among Adolescents: II. The Perspective of Relevant Stakeholders.” Journal of Mental Health 28 (3): 304–11; Nasland, John A., et al. 2014. “Naturally Occurring Peer Support through Social Media: The Experience of Individuals with Severe Mental Illness Using YouTube.” PLOS One 9 (10): 1–9.

[2] US government statistics on mental illness prevalence and treatment are available at: https://www.nimh.nih.gov/health/statistics/mental-illness.shtml#part_15….

[3] American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM-5. Washington, DC: American Psychiatric Association, p. 12.

[4] Kessler, Ronald C. 2002. “The Categorical versus Dimensional Assessment Controversy in the Sociology of Mental Illnesses.” Journal of Health and Social Behavior 43 (2): 171–88.

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