A defining factor of the Theory of Neurodiversity is the rejection of what is called the Medical Model. John Elder Robison, Scholar in Residence and Co-chair of the Neurodiversity Working Group at the College of William & Mary, considers neurological differences such as autism and ADHD (or Kinetism, a newish, non-derogatory designation for the neurotype clinically designated as ADHD) to be “the result of normal, natural variation in the human genome”, which “represents a new and fundamentally different way of looking at conditions that were traditionally pathologized” (Robison, 2013).

To pathologize something is to characterize it as medically or psychologically abnormal. Pathologization is a common manifestation of the medical model and strongly affects how our culture looks at neurodiversity. We can see this reflected in the language of the autism diagnostic criteria section of The DSM-5 (American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, DSM-5 TR, 2022), where words such as deficit, abnormal, and failure are frequently used to describe autistic behaviors. In essence, the medical model is not capable of defining neural differences other than in terms of deficiency and failings, and it sets as a goal the elimination (normalizing) of autism-associated behaviors.

In their essay Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm, from the website Neuroqueer, Nicholas Walker, professor of Psychology at the California Institute of Integral Studies and senior aikido instructor at the Aiki Arts Center in Berkeley, conceptualizes the medical model in terms of the Neurodiversity Paradigm vs the Pathology Paradigm:

“The pathology paradigm ultimately boils down to just two fundamental assumptions:

1. There is one ‘right,’ ‘normal,’ or ‘healthy’ way for human brains … to be configured and to function (or one relatively narrow ‘normal’ range into which the configuration and functioning of human brains and minds ought to fall).

2. If your neurological configuration and functioning (and, as a result, your ways of thinking and behaving) diverge substantially from the dominant standard of ‘normal,’ then there is Something Wrong With You” (Walker, 2013).

A counter to the medical model is The Social Model, a concept borrowed from the greater disability-rights movement, which states that “people with differences do not need to be cured; they need help and accommodation” (Robison, 2013). The social model differentiates between the concept of impairment, which is the measure of the physiological distance from that which is considered typical, and disability, which involves societal obstacles and impediments to be overcome, or, as Patrick Dwyer of the website Autistic Scholar informs us, “the person has an impairment, but the disability arises from society” (2018). To the person using a wheelchair for self-autonomy, this looks like wheelchair ramps and accessible washrooms; to the neurodiverse person, it can look like accommodations for acute sensory overload, such as bans on flashing/fluorescent lights or perfumes, and strong opposition towards childhood training programs designed “to eliminate unusual but harmless behaviors, like avoiding eye contact or repetitive body movements … without regard for the coping mechanisms they may serve” (Kapp, et al., 2013, p. 60).

But Neurodiversity Theory arguably takes a step beyond the social model by reassessing our definition of what is truly required in terms of abilities for a person to have a well-lived life. This does not deny or downplay the physical impairments that some autists experience, and since autism is a very broad spectrum, these impairments can range from minor to profound. However, according to Aiyana Bailin, disability rights advocate and autism-care professional, “profound impairments don’t change a person’s right to dignity, to privacy and to as much self-determination as possible, whether that means choosing their career or choosing their clothes”, and “respecting neurodiversity means respecting nonverbal choices, even when those choices are ‘weird’ or ‘not age-appropriate’” (Bailin, 2019). Neurodiversity Theory celebrates “inclusion based on universal rights principles” (Kapp, 2020, p. 4), expanding the concept of universal human rights to encompass neurovariance, and arguing that there can no more be a correct form of neurocognitive functioning than there can be a correct ethnicity, or a superior gender. This unites the neurodiverse sector with the greater human-rights community because it regards neural diversity to be on equal footing with cultural-, sexual-, and biodiversity (Kapp, 2020; Masataka, 2017).

I especially love the comparison of neurodiversity with specifically biodiversity because it articulates the idea that the human race has always needed the entire spectrum of neurovariants, both for survival and to move the human species forward into the future (Masataka, 2017). From journalist Harvey Blume, in one of the first articles published on the subject of neurodiversity (Atlantic Magazine, September, 1998): “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?” (Blume, 1998). Dora M. Raymaker self-described autistic/queer/genderqueer scientist/author/multi-media artist & troublemaker, explains that “as a systems scientist, I know diversity provides social and ecological systems with flexibility, resilience, innovation, and a greater chance of optimal survival. As a human rights activist, I know all humans are to be valued” (Raymaker, 2020, p. 134).

(Some sections of this writing are edited excerpts from my masters thesis, “Conceptualizing Autism as Discrete Behavioral Traits”, Teachers College, Columbia University, 2021 — PEF)

References

American Psychiatric Association. (2022). Autism spectrum disorder. In Diagnostic and statistical manual of mental disorders (5th ed., text rev.) https://doi.org/10.1176/appi.books.9780890425787.x01_Neurodevelopmental_Disorders

Bailin, A. (2019). Clearing up some misconceptions about neurodiversity. Scientific American. June, 6. https://blogs.scientificamerican.com/observations/clearing-up-some-misconceptions-about-neurodiversity/

Blume, H. (1998). Neurodiversity: On the neurological underpinnings of geekdom. The Atlantic, 30. Retrieved from: https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/

Dwyer, P. (2018, October 1). The social model and neurodiversity. http://www.autisticscholar.com/social-model-neurodiversity/

Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59–71. http://dx.doi.org.ezproxy.cul.columbia.edu/10.1037/a0028353

Kapp, S. K. (2020). Introduction. In S.K.Kapp (Ed.), Autistic community and the neurodiversity movement (pp. 1–19). Palgrave Macmillan. https://doi.org/10.1007/978-981-13-8437-0

Masataka, N., (2017). Implications of the idea of neurodiversity for understanding the origins of developmental disorders. Physics of Life Reviews, 20, 85–108. https://doi.org/10.1016/j.plrev.2016.11.002

Raymaker, D. M. (2020) Shifting the system: AASPIRE and the loom of science and activism. In S. K. Kapp (Ed.), Autistic community and the neurodiversity movement (pp.133–144). Palgrave Macmillan. https://doi.org/10.1007/978-981-13-8437-0

Autism’s official name is autism spectrum disorder, but is autism, in fact, a disorder? What actually is a disorder? I did a fairly in-depth search for the answer to this and found that currently there is no one agreed-upon definition of what constitutes a medical disorder.

According to the National Cancer Institute, a disorder is “a disturbance of normal functioning of the mind or body”. Colins English Dictionary defines it as “a problem or illness which affects someone’s mind or body”. The World Health Organization (WHO) says that “a mental disorder is characterized by a clinically significant disturbance in an individual’s cognition, emotional regulation, or behaviour, usually associated with distress or impairment in important areas of functioning”.

But does autism meet these criteria? Here’s what I’m wondering: if autism is a disorder, and a disorder is “a disturbance of normal functioning”, then who gets to define what normal functioning is? Do people who are Actually Autistic get to contribute to this definition, or were these definitions created by “experts” who have no first-hand, lived experience of autism? And if the latter is so, and autism is a disorder, aka “a disturbance of normal functioning”, are we, then, expected to agree with this definition, along with the other above descriptions of autistic life experience as “a problem”, or as “a clinically significant disturbance”? This makes no sense to me. Why is this still a thing?

When I searched through the research literature for a definition of the word disorder, I repeatedly came across Jerome Wakefield’s Harmful Dysfunction Analysis (HDA), first introduced in 1992, and regarded in the psychology/philosophy field as arguably a central standard by which other definitions of disorder can be contrasted. Wakefield defines a disorder as a hybrid of two established philosophical positions:

Naturalism, which defines disease/dysfunction as the failure or deficiency of a physical feature or biological process to perform the natural function for which it has evolved, and,

Normativism, which maintains that the conceptualization of a disease/disorder is dependent upon the values of the surrounding culture.

Harmful dysfunction thus requires two conditions:

First, that a physiological dysfunction of some sort be present, “where dysfunction is the failure of some feature to perform a natural function for which it is biologically designed by evolutionary processes”, and,

Second, that “harm is judged in accordance with social values” (Wakefield, 2021, p. 27).

In 2020, Wakefield, along with co-writers David Wasserman & Jordan Conrad, turned their sights on the Neurodiversity Movement to explore whether autism qualifies as a dysfunction per Harmful Dysfunction guidelines. Their chapter Neurodiversity, Autism, and Psychiatric Disability: The Harmful Dysfunction Perspective in The Oxford Handbook of Philosophy and Disability (2020), states that harmful dysfunction unequivocally applies to what they term “severe classic autism” (p. 506). By their definition, severe classic autism entails extreme lack of function in social communication, and/or uncontrolled rigid/repetitive behaviors, as outlined in the DSM-5 (American Psychiatric Association, 2013).

Wakefield & associates describe a central question of Neurodiversity as being whether the Harmful Dysfunction designation for severe cases of autism has been illogically extended to the vast majority of autistic people who manifest fewer and less-pronounced traits and behaviors. They adopt a self-described “moderate Neurodiversity position” (p. 516), which rejects what they describe as the Neurodiversity-associated belief that autism is primarily a “distinctive cognitive and perceptual style” (p. 502) (though some in the Neurodiversity community might object to that definition), but accepts the Neurodiversity model of neural difference (implying no harmful dysfunction) for the population of people with autism or autism-related behaviors who are able to socially and operationally function within their culture (Wakefield, Wasserman & Conrad, 2020). Ok, so this may seem a bit patronizing to some (including me), as in “pat, pat on the head — yes, you autists who can walk and talk and hold a job can join the normal-people club”, but I do acknowledge that this is a huge step forward for Wakefield, a bit brave of him, in fact, in that he examined the matter objectively and is eschewing the label of disorder for autism (for most autists, that is) while it is still identified as such in the DSM-5 (American Psychiatric Association, 2013).

Robert Chapman (2021), Senior Lecturer in Education at Sheffield Hallam University, writes that such definitions of disorders are lacking in that that they still depict autism in terms of personal deficits (which, as you will recall, is Wakefield’s first requirement of Naturalism), rather than depicting it in terms of individual differences from the societal norm (Wakefield’s second requirement of Normativism). Chapman argues that dysfunction, as applied to the autistic population, is actually relational, and can be looked at in two ways:

1. a mutual relational dysfunction between the neurodiverse and neurotypical populations, and,
2. a second, separate relational disconnect between autistic people and the societal cultures which are “ordered and designed in a way that devalues and disables the autistic form of life” (Chapman, 2021, p. 7).

Aiyana Bailin (2019), disability rights advocate and autism-care professional, makes an argument which appears to agree with Chapman’s point, stating that it is not unusual for autistic people to skillfully participate in social interactions with other autistic people, and that not only should their social skills not be judged by the level of their ability to interact with non-autistic people, but, importantly, that non-autistics are frequently reluctant to socialize with autistic people, which she considers to be “a social problem caused for autistic people by nonautistic people, not a social disability in autism” (Bailin, 2019).

So, finally, is autism a disorder? Ok, let’s break apart this word. The word disorder is composed of the concept of order, modified by the prefix dis. So first, what is meant by the word order? As in: a person is an ordered person. What does this mean? What constitutes an ordered person? Steady? In control? Devoid of original ideas? No, I suspect it means the same old thing we’ve seen before — an ordered person is defined by their ability to color within the lines; to do the expected thing, live the expected life, to not stray from the realm of normal, typical behaviors within their culture.

Now let’s examine the prefix dis, which, according to Merriam-Webster, means:

deprive of;

exclude or expel from; or,

opposite or absence of.

Notice that, when applied to the word “ordered”, two of these definitions indicate actions taken by others, not the individual who we are describing (as in, it is not the so-called disordered person who is doing the depriving, excluding and expelling), and the last definition (opposite or absence of) is a classic example of othering, as in: there exists some desirable state of ordered being that this person just does not achieve; they are lacking; they are disordered.

Now recombine the word order with the prefix dis, to modify order into disorder, which, per our above dictionary definition, would now be defined as:

deprived of the state of order,

excluded/expelled from the realm of order, or,

the opposite/absence of the experience of order.

To my understanding, this creates a destructive binary which establishes a healthy, desirable norm and then negatively contrasts all who are not qualified to join that club. If we agree to label autistic people with the label disorder, per this definition, then we risk buying into the concept that:

1. There is a desirable state of being in our culture called ordered, and,
2. Those who do not fit this cultural norm are deprived, lacking, excluded.

I advocate for the removal of the word disorder from the definition of autism. I say off with its head. And good riddance. I have yet to find a definition of it that does not constitute a destructive binary, and I see no clear justification for burdening autists with this medical label, always meant disparagingly and with exclusion.

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(Some sections of this writing are edited excerpts from my masters thesis, “Conceptualizing Autism as Discrete Behavioral Traits”, Teachers College, Columbia University, 2021 — PEF)

References

American Psychiatric Association. (2013). Autism diagnostic criteria. In Diagnostic and statistical manual of mental disorders (5th ed.). https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

Bailin, A. (2019). Clearing up some misconceptions about neurodiversity. Scientific American. June, 6. https://blogs.scientificamerican.com/observations/clearing-up-some-misconceptions-about-neurodiversity

Chapman, R. & Bovell, V. (2021). Neurodiversity, Advocacy, Anti-Therapy. Retrieved from https://www.researchgate.net/profile/Robert-Chapman-4/publication/348062568_Neurodiversity_Advocacy_Anti-Therapy/links/5fedfaa0299bf1408860e2b2/Neurodiversity-Advocacy-Anti-Therapy.pdf

Wakefield, J. C., Wasserman, D., & Conrad, J. A. (2020). Neurodiversity, autism, and psychiatric disability: The harmful dysfunction perspective. In A. Cureton & D. T. Wasserman (Eds.). The Oxford handbook of philosophy and disability (pp. 1–24). Oxford University Press.

Wakefield, J.C. (2021). From Ribot and Dupré to Spitzer and RDoC: Does the Harmful Dysfunction Analysis Possess Historical Explanatory Power? Reply to Steeves Demazeux. In L. Faucher & D. Forest, (Eds.), Defining mental disorder: Jerome Wakefield and his critics (pp 27- 46). MIT Press. doi:10.7551/mitpress/9949.001.0001