Rethinking Labeling Autism as a Disorder
Patricia E. Finnegan, M.A., Developmental Psychology
pf2379@tc.columbia.edu
Published on Medium, February 18, 2023
https://medium.com/@pf2379/whats-in-a-name-rethinking-labeling-autism-as-adisorder-72ac3dc41c4?
source=friends_link&sk=84b5823ba611bd4933854dd5fd1ac481
Autism’s official name is autism spectrum disorder, but is autism,
in fact, a disorder? What actually is a disorder? I did a fairly indepth 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 Neurodiversityassociated 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 normalpeople 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:
•
a mutual relational dysfunction between the neurodiverse and neurotypical populations, and,
•
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 nonautistics 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 this word apart. 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:
•
There is a desirable state of being in our culture called ordered, and,
•
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.
(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. https://doi.org/10.7551/mitpress/
9949.001.0001