The Neurodiversity Movement: Confusing Illness with Stigma?

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AFFIRMING PSYCHIATRY

Is ADHD Real?

In 30 years of psychiatry, I have frequently been in doubt about the true nature of attention-deficit/hyperactivity disorder (ADHD). Is it an illness? Is it simply a variation of normal? Is it a problem in our culture that might not be a problem in other cultures? The source of my doubt, I suspect, is that individuals just seem to ‘be wired that way.’ ADHD, it seems, is heavily influenced by genetics,¹ and some individuals just seem wired to be more spontaneous, more distractable, more open to the next thing, and less able to keep themselves focused on things they find boring or tedious. It is just how they are.

Maybe ‘how they are’ would have been less of a problem in premodern times, when being open and exploratory may have been an advantage more than a hindrance. In premodern times, we did not ask children to sit in school for 6 hours a day doing work that would bore adults, nor did we ask adults to stare at screens and do mind-numbing tasks for 9 hours a day. Perhaps ADHD is just a mismatch between the demands of our current world and the nature of the world for which we evolved.² Perhaps it is not a disease at all.

Yet I cannot fully bring myself to believe that ADHD is not an illness. For one thing, clinical experience proves otherwise. Once I worked with a patient who was about to be fired from his job in spite of working until late into the night to get his work done. Meanwhile, his partner was preparing to divorce him because he completely neglected the relationship in an effort to save his job. This person’s life was transformed by treatment, which saved both his job and his relationship, and brought him a kind of happiness he had never experienced. The research, of course, confirms such individual experiences: ADHD is associated with relationship failures, vocational impairment, increased traffic accidents, substance abuse, mood disorders, and a host of other complications.³ ADHD is real. It is biological (with 70% heritability¹); it is life altering, and it is eminently treatable.³ And so, even if individuals are ‘just born that way,’ severe ADHD is, in my mind, likely to be a true biological illness. Mild ADHD symptoms? Probably—but it is hard to know where to draw the line.

Neurodiversity

This brings us to the topic of neurodiversity. Neurodiversity is the idea that such neurodevelopmental conditions as ADHD and (especially) autism spectrum are not illnesses or even disorders. They are simply a different way of being human, with different advantages and disadvantages. Therefore, these conditions should not be stigmatized as illnesses, as if there is something wrong or defective about those who deal with them.

In its strongest form, neurodiversity tells us that neurodevelopmental ‘disorders’ are not disorders or illnesses at all. They are really just normal parts of human diversity, as normal as different ethnicities, sexes, and sexual preferences. No one should try to ‘cure’ autism any more than one should try to ‘cure’ someone of being Black. Instead, societies need to stop excluding and pathologizing individuals who are different—in this case, who are neurocognitively diverse.

If the extreme form of neurodiversity is true, then a psychiatrist treating autism amounts to the same thing as a psychiatrist attempting to ‘cure’ someone from being gay, as psychiatrists did before the 1970s. By this logic, psychiatrists who diagnose and treat autism spectrum disorder are patronizing and pathologizing individuals just for being different, just for being divergent. “We don’t have a disease,” as one student at an Asperger’s School put it, “so we can’t be ‘cured.’”⁴

As with moderate and severe forms of ADHD, I am convinced from both science and personal experience that moderate to severe forms of autism spectrum disorder represent a true medical condition. For that matter, I would guess that most mild forms of the disorder do as well. Of course, knowing where to draw the precise line for such neurocognitive and neurodevelopmental disorders may be humanly impossible. Where, after all, does normal human inattentiveness end and ADHD begin? Where does normal human geekiness (lack of social awareness and obsessive, narrow interests) end, and autism spectrum begin?

Neurodiversity and Stigma

I will not attempt to pronounce upon such complicated questions here. What I mean to convey is my belief that proponents of neurodiversity do have a point. In some ways, conditions like ADHD and autism do represent extreme distributions of common human traits, and carry advantages or enhanced abilities with them. In other ways, such conditions also include (by definition) markedly diminished human functions such as attention and social cognition. In this sense, I suspect that I and most psychiatrists would share many of the insights championed by neurodiversity, even if we disagree with the assertion that neurodevelopmental and neurocognitive disorders are not illnesses.

While I find a good bit to appreciate about neurodiversity, there is one implication that I find truly problematic: that there is something wrong with having an illness. There is this idea packed into neurodiversity that being diagnosed with an illness is disempowering, diminishing, and demeaning. I disagree; there is nothing demeaning about having an illness. Having an illness is part of the human condition. Every single one of us will experience acute and chronic illnesses before we die. There is no such thing as living a full human life without illness.

As far as chronic illness goes, 60% of US adults suffer from at least 1 chronic illness at any given time. Approximately 55% of us will experience mental illness at some point in life.⁵ There is nothing unusual about suffering from chronic or even mental illness. The fact that I have such illnesses does not separate me from the mass of other human beings or make me fundamentally different. Everyone carries illnesses. Everyone, at times, needs treatment. That is something we all share.

Of course, diagnosis and treatment can be used to stigmatize and exclude. Individuals with unwelcome political beliefs were treated as insane in the old Soviet Union, and drapetomania (the intense desire of slaves to seek freedom) was concocted as a mental illness in antebellum America. But the time of diagnosis carrying a stigma is over. No one is to be excluded or treated as less than on account of illness. Simply denying that our illnesses exist is not a solution to the problem of stigma. In fact, it is an implicit endorsement of stigma.

I believe we all should try to pry apart stigma and illness. Stigma, a means by which groups ‘other’ and exclude fellow human beings, is toxic and destructive. The fact that it has frequently accompanied illness does not mean that stigma is a part of illness. Stigma is not a part of illness, and if stigma is not part of illness, then diagnosing and treating a true medical illness is not an act of oppression or devaluation. It is a therapeutic act. Illness should trigger compassion and human fellow-feeling in us, not judgment and rejection.

The work of advocacy today is not to deny the existence of well-researched illnesses, but to permanently rid those illnesses of the stigma that has traditionally accompanied them. Similarly, the work of advocacy is not to decide if this or that person has an illness—this is an individual decision made by patients and their families when they consult with clinicians. The work of advocacy is to make sure that everyone with an illness is treated with complete acceptance, compassion, and support.

I wonder if proponents of neurodiversity and psychiatrists might both agree to the following: What if we imagine a world in in which no one looks down on neurocognitive and neurodevelopmental conditions, a world in which those conditions are both accepted and treated, and we work together to make that kind of world a reality?

Dr Morehead is a psychiatrist and director of training for the general psychiatry residency at Tufts Medical Center in Boston. He frequently speaks as an advocate for mental health and is author of Science Over Stigma: Education and Advocacy for Mental Health, published by the American Psychiatric Association. He can be reached at dmorehead@tuftsmedicalcenter.org.

References

1. Faraone SV, Larsson H. Genetics of attention deficit hyperactivity disorder. Mol Psychiatry. 2019;24(4):562-575.

2.Swanepoel A, Music G, Launer J, Reiss MJ. How evolutionary thinking can help us to understand ADHD. Adv Psychiatr Treat. 2017;23(6):410-418.

3. Faraone SV, Banaschewski T, Coghill D, et al. The World Federation of ADHD International Consensus Statement: 208 evidence-based conclusions about the disorder. Neurosci Biobehav Rev. 2021;128:789-818.

4. Harmon A. How about not ‘curing’ us, some autistics are pleading. The New York Times. December 20, 2004. Accessed June 1, 2023. https://www.nytimes.com/2004/12/20/health/how-about-not-curing-us-some-autistics-are-pleading.html

5. Morehead D. Science Over Stigma: Education and Advocacy for Mental Health. American Psychiatric Press; 2021.