Neurodiversity is an approach to learning and mental health that argues various neurological conditions are the result of normal variations in the human genome. "Neurodiversity" is a portmanteau
of "neurological" and "diversity" that originated in the late 1990s as a
challenge to prevailing views of certain neurological conditions as
being inherently pathological, instead asserting that neurological differences should be recognized and respected as a social category on par with gender, ethnicity, sexual orientation, or disability status.
The neurodiversity movement describes itself as an international civil rights movement, of which the autism rights movement is its most influential submovement. Citing the classic legal maxim, "Nothing About Us Without Us",
the movement promotes self-advocacy of its members. Neurodiversity
advocates promote support systems (such as inclusion-focused services,
accommodations, communication and assistive technologies, occupational
training, and independent living support)
that allow those who are "non-neurotypical" to live their lives as they
are, rather than being coerced or forced to adopt what neurodiversity
proponents see as uncritically accepted ideas of normality, or to
conform to a clinical ideal. Neurodiversity frames autism,
dyslexia, and other neurological conditions as natural human variations
rather than pathologies or disorders, and rejects the idea that
neurological differences need to be (or can be) cured, instead believing them to be authentic forms of human diversity, self-expression, and being.
Terminology
According to the 2011 National Symposium on Neurodiversity held at Syracuse University, neurodiversity is:
... a concept where neurological differences are to be recognized and respected as any other human variation. These differences can include those labeled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others.
Autism rights movement
The autism rights movement (ARM) is a social movement
within the neurodiversity movement that encourages autistic people,
their caregivers and society to adopt a position of neurodiversity,
accepting autism as a variation in functioning rather than a mental disorder to be cured. The ARM advocates a variety of goals including a greater acceptance of autistic behaviors; therapies that teach autistic individuals coping skills rather than therapies focused on imitating behaviors of neurotypical peers; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the Autistic community as a minority group.
Autism rights or neurodiversity advocates believe that the autism
spectrum is genetic and should be accepted as a natural expression of
the human genome. This perspective is distinct from two other views: the
mainstream perspective that autism is caused by a genetic defect and
should be addressed by targeting the genes that cause autism; and the
perspective that autism is caused by environmental factors and could be
cured by addressing environmental causes.
Many autistic supporters of autism rights describe themselves
through words that emphasize the condition as an intrinsic part of their
identity, such as "autistic", or "aspie" for those with Asperger syndrome. This contrasts to a general recommendation by US disability advocacy organizations for the use of person-first language when referring to a person with a medical or mental condition or disability, which emphasizes the person with the condition, who has, rather than is defined by it. There are accepted general arguments for the use of 'disabled person' similarly based on the social model of disability that are recognized in the UK and elsewhere.
Acceptance perspective
Members of the various autism rights organizations view autism as a
way of life rather than as a disease and thus advocate acceptance over a
search for a cure. Some advocates believe that common therapies for the behavioral and language differences associated with autism, like applied behavior analysis, are not only misguided but also unethical.
The "acceptance perspective" endorsed by the movement is a view that autism
is not a disorder, but a normal occurrence—an alternate variation in
brain wiring or a less common expression of the human genome.
Advocates of this perspective believe that autism is a unique way of
being that should be validated, supported and appreciated rather than
shunned, discriminated against or eliminated.
They believe quirks and uniqueness of autistic individuals should be
tolerated as the differences of any minority group should be tolerated
and that efforts to eliminate autism should not be compared, for
example, to curing cancer but instead to the antiquated notion of curing
left-handedness. The ARM is a part of the larger disability rights movement, and as such adheres to the social model of disability. Within this model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.
Advocacy
According to Andrew Fenton and Tim Krahn, proponents of
neurodiversity strive to reconceptualize autism and related conditions
in society by the following measures: acknowledging that neurodiversity
does not require a cure; changing the language from the current
"condition, disease, disorder, or illness"-based nomenclature and
"broaden[ing] the understanding of healthy or independent living";
acknowledging new types of autonomy; and giving non-neurotypical
individuals more control over their treatment, including the type,
timing, and whether there should be treatment at all.
A 2009 study
by Edward Griffin and David Pollak separated 27 students (with autism,
dyslexia, developmental coordination disorder, ADHD, and stroke), into
two categories of self-view: "a 'difference' view—where neurodiversity
was seen as a difference incorporating a set of strengths and
weaknesses, or a 'medical/deficit' view—where neurodiversity was seen as
a disadvantageous medical condition". They found that although all of
the students reported uniformly difficult schooling careers involving
exclusion, abuse, and bullying, those who viewed themselves from a
difference view (41% of the study cohort) "indicated higher academic
self-esteem and confidence in their abilities and many (73%) expressed
considerable career ambitions with positive and clear goals".
Many of these students reported gaining this view of themselves through
contact with neurodiversity advocates in online support groups.
A 2013 online survey said this: "Such a deficit-as-difference
conception of autism suggests the importance of harnessing autistic
traits in developmentally beneficial ways, transcending a false
dichotomy between celebrating differences and ameliorating deficit".
In 2013, German computer software giant SAP, seeking innovation that
"comes from the edges", launched a recruitment drive for software
testers specifically seeking autistic people. Freddie Mac, the U.S. home financing firm, aimed its hiring campaign's second round of paid internships at autistic students.
History
The neurodiversity paradigm was initially embraced by individuals on the autism spectrum, but subsequent groups have applied the concept to other developmental conditions such as ADHD, developmental speech disorders, dyslexia, dyspraxia, dyscalculia, dysnomia, intellectual disability and Tourette syndrome; mental health conditions such as bipolarity, schizophrenia, schizoaffective disorder, sociopathy, and obsessive–compulsive disorder as well as the medical condition Parkinson's disease. The term neurodiversity represents a move away from the "mother-blaming" refrigerator mother theories of the 20th century.
The term is attributed to Judy Singer, an Australian social scientist on the autism spectrum, and it first appeared in print in an article by journalist Harvey Blume (which did not credit Singer) in The Atlantic on September 30, 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? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.
In a New York Times
piece on June 30, 1997, Blume did not use the term "neurodiversity",
but he did describe the foundation of the idea in the phrase
"neurological pluralism":
"Yet, in trying to come to terms with an NT [neurotypical]-dominated world, autistics are neither willing nor able to give up their own customs. Instead, they are proposing a new social compact, one emphasizing neurological pluralism. ... The consensus emerging from the Internet forums and Web sites where autistics congregate [...] is that NT is only one of many neurological configurations -- the dominant one certainly, but not necessarily the best."
Blume was an early advocate who predicted the role the Internet would
play in fostering the international neurodiversity movement, writing:
There is a political dimension to this bond with the Internet. A project called CyberSpace 2000 is devoted to getting as many people as possible in the autistic spectrum hooked up by the year 2000, reason being that "the Internet is an essential means for autistic people to improve their lives, because it is often the only way they can communicate effectively. ... The challenge we will all be increasingly confronted with, on-line and off, is, to look at ourselves differently than we have before, that is, to accept neurological diversity.
Some authors also credit the earlier work of autistic advocate Jim Sinclair,
who was a principal early organizer of the international online autism
community. Sinclair's 1993 speech, "Don't Mourn For Us",
mentioned that some parents considered their child's autism diagnosis
as "the most traumatic thing that ever happened to them". Sinclair (who
did not speak until the age of 12) addressed the communal grief parents
felt by asking them to try to take the perspectives of autistic people
themselves:
Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have ... There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person—and if it were possible, the person you'd have left would not be the same person you started with. This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
The term "neurodiversity" has since been applied to other conditions and has taken on a more general meaning; for example, the Developmental Adult Neurodiversity Association (DANDA) in the UK encompasses developmental coordination disorder, ADHD, Asperger's syndrome and related conditions.
Criticism
The concept of neurodiversity is controversial. Those supporting the medical model of disability
identify the mental differences associated with these conditions as
disorders, deficits, and dysfunctions, intrinsic differences in
functioning which cause impairments in many areas of life. From this
point of view, the mental states that are encompassed by neurodiversity
are medical conditions that can and should be treated.
Author David Pollak sees neurodiversity as an inclusive term for
the equality of all possible mental states. Still others reject the word
because they think it sounds too medical.
The concept of neurodiversity as applied to autism
is criticized for being skewed towards the "high-functioning"
individuals of the autistic spectrum or those with milder forms of the
condition. Those with "low-functioning" autism are often significantly
impaired in their everyday functioning, and may not be able to function
effectively with even the extensive use of advanced assistive technologies.
Because many of these low-functioning individuals are unable to
communicate effectively to express their opinions and wishes,
controversy surrounds the issue of who represents them and what
represents their interests. Sue Rubin, an autistic woman and author who was the subject of the documentary Autism is a World, who communicates with facilitated communication,
favors a cure for the condition and asserts that while those with
high-functioning autism tend to support the neurodiversity anti-cure
position, those who have low-functioning autism generally hold the
opposite opinion.
Jaarsma and Welin wrote in 2011 that the "broad version of the
neurodiversity claim, covering low-functioning as well as
high-functioning autism, is problematic. Only a narrow conception of
neurodiversity, referring exclusively to high-functioning autists, is
reasonable."
They say that "higher functioning" individuals with autism may "not
[be] benefited with such a psychiatric defect-based diagnosis ... some
of them are being harmed by it, because of the disrespect the diagnosis
displays for their natural way of being", but "think that it is still
reasonable to include other categories of autism in the psychiatric
diagnostics. The narrow conception of the neurodiversity claim should be
accepted but the broader claim should not."
Criticism has been levied against the "acceptance" position of
neurodiversity advocates, with it being noted that even though the
biomedical therapies that target the clinical features of, for example,
autism and the conditions that may co-occur with it, do not amount to a
complete cure, such treatments can still potentially significantly
improve the everyday functioning and quality of life of those with these
conditions. While such treatments require substantial investment and
development and would not be available for application in the immediate
future, they may provide greater benefit in the future and in the
long-term.
Many of those who view autism as a disabling developmental disease
consider that the acceptance perspective of neurodiversity insults the
suffering of its patients and their families. Biology professor Jerry Coyne
says that in its extreme, neurodiversity wishes to deny medical
treatment for any person with a mental condition, particularly autism,
even if the person wants a medical treatment.
In 2019, the National Council on Severe Autism
was formed to address those concerns by putting a greater emphasis on
issues associated with low-functioning autism. Topics to be addressed
include housing arrangements, adequate developmental services, and
scientific research.
The National Council on Severe Autism has issued position statements
on hot-button issues such as guardianship, crisis care, employment and
what qualifies as a community-based setting.
Jonathan Mitchell, an autistic
author and blogger who is a vocal opponent of the neurodiversity
movement and an advocate for research for a cure for autism, criticizes
the concept of neurodiversity for providing "simplistic solutions to
hard problems" and trivializing the disabling aspects of autism.
He considers his condition to have negatively affected his life,
describing autism as having "prevented me from making a living or ever
having a girlfriend. It's given me bad fine motor coordination problems
where I can hardly write. I have an impaired ability to relate to
people. I can't concentrate or get things done."
He describes neurodiversity as a "tempting escape valve" for many of
the people who are on the autism spectrum; and commenting on the
supposition of a general acceptance of neurodiversity by those on the
spectrum, he says that "most persons with an autism-spectrum disorder
have never expressed their opinions on someone's blog and never will".
He states that neurodiversity has no solution for low-functioning
autistic people. He also criticizes Temple Grandin
for making generalizations about the condition and the experiences of
those with it, saying that her generalizations trivialize his suffering.
Due to these positions, Mitchell is one of the most controversial
voices in the autistic blogosphere, and has been highly criticized by
many members of the neurodiversity movement.
Thomas Clements, an autistic writer, supports some goals of the
neurodiversity movement, but opposes neurodiversity's modern focus on
identity politics. He supports the general idea of providing better
accommodations for autistic people in life, and advocates that autistic
individuals should be treated humanely. On the other hand, he says that
autism should be seen as a disability as opposed to an identity label,
and that neurodiversity is not appropriate for low-functioning autistic
individuals. He objects to the idea that the "autism" label should be
seen as a sacred, untouchable part of one's identity.
