Neurodiversity is a term accredited to Australian sociologist and psychologist Judy Singer and her 1999 thesis titled "'Why can't you be normal for once in your life?' From a 'problem with no name' to the emergence of a new category of difference" published at the University of Technology, Sydney (Singer, 1999). A year earlier, American journalist Harvey Blume, who shared a close correspondence with Singer through their common interest in autism studies, used the term for the first time on The Atlantic, drawing a parallel between neurodiversity and the well-established concept of biodiversity, asserting that the former may be just as crucial for the human race and society as the latter (Blume, 1998). 

 

This particular school of thought has in fact been sported by a some activists in as early as 1993, when proponent and the original coordinator of the Autism Network International, the late Jim Sinclair, first made their famous speech "Don't Mourn For Us" and identified autism as a way of being and a part of an identity that is inseparable from autistic individuals (Sinclair, 1993).

 

The movement, now also known as the Autism Rights Movement or the Autistic Culture Movement, propagates the idea that the autism spectrum is the result of intricate but emphatically natural variations in the human brain - a variation that constitutes part of an identity rather than a clinical or pathological disease (Jaarsma & Welin, 2011). Its model conveys 6 key perspectives as detailed below (Solomon, 2008).

 

1. Autism is a disability, and not a disease. The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition by the American Psychiatric Association (referred to hereafter as DSM-5) defines autism spectrum disorder as the manifestation of “persistent deficits in [...] areas of social communication and interaction” in addition to “types of restricted, repetitive behaviors” (APA, 2013). However ASD should not be made analogous to diseases such cancer, AIDS, epidemics, or madness (as certain organizations, advocacy groups, and individuals were known to have done) for it is highly offensive and undermines the fact that many people on the spectrum are successful and significant contributors to our society and its scientific progressions, and that their success was not hindered by, but achieved through their being as an individual on the spectrum (Grinker, 2009).

2. Autism does not need to be cured, and there is no cure. This speaks to the fundamental belief that autism is a way of being that should be respected as a unique aspect of an individual’s identity that calls for appreciation and acceptance over antagonization and pathologization (Harmon, 2004). This perspective views autism as an expression of a less commonly expressed part of the human genome, similar to left-handedness, and that it is neither better nor worse, but simply different, than the neurotypical majority of the population. 

3. Autistic people have their own culture that should be acknowledged and respected (Silverman, 2008). ASD is a common link for those on the spectrum, in a manner similar to nationality, language, and ethnicity. Everyone is different but they also share a bond that deserves recognition and respect. They are a subgroup of society but a legitimate part of it nonetheless; not an undesirable abnormality to be eradicated in an ideal society as envisioned by certain advocacy organizations.

4. Autistic people require inclusion and representation in the conversation regarding autism. Many autism advocacy organizations are led and operated by parents, relatives, and professionals, yet lack representation from individuals directly from the spectrum (Dawson, 2003). This appears patronizing, and as a reaction to such status quo a growing theme is to shift the focus to autistic individuals themselves for their voices, thoughts, and opinions to be heard in the conversation pertaining to their own wellbeing.  

5. Autism therapy often results in allegedly unethical practices emphasizing conformity over individuality. Therapies such as applied behavior analysis (ABA) are accused of targeting harmless habitual behaviours that could even be in fact healthy autistic coping mechanisms, and that the end goal of such therapies is conformity, and is effectively of no legitimate benefit, if not detrimental, to the individual’s wellbeing (Dawson, 2004).

6. Autism genes should not be eliminated. This is a prospective perspective in response to the future possibility of prenatal testing of autistic infants prior to birth (Caplan, 2005). This is a contested topic that also brings in the conversation of ethics regarding abortion, genocide and social selection as opposed to natural selection.

 

These perspectives directly confront the disease and medical model of autism, which in contrast devotes much attention and resources seeking treatment, therapy, and ultimately cures to the disorder (Solomon, 2008). 

 

It is equally important to understand that such a perspective is not without criticism and opposition. Support for the disease and medical model exist, and so does the perspective that incomplete representation may skew the voices and needs of the whole group (Baron-Cohen, 2019). As stated above, the ASD is on quite a broad spectrum, and while some autistic individuals are able to lead independent and successful lives, some cannot. While some autisitic individuals can articulate their thoughts and project their voices, some cannot. Those who can speak for themselves and those who cannot are different individuals living vastly different lives, and why should the public trust the former to be able to, or be willing to, understand the struggles of the latter, to represent the latter, to voice the needs of the latter, and to advocate for the benefit of the latter - better than the parents, relatives, social workers, and caretakers of the latter who are deeply involved with the wellbeing of the latter? The perspective asserts that those on the spectrum who are able to vocalize against the disease model and reject therapies and research for cures are the ones who can live a fulfilling life without the need for any of them in the first place; and that this movement could be selfish in that it lacks consideration for those on the spectrum who are more impacted, more dependent, and much less vocalized.

 

Controversies exist, but this conversation is neither intending to nor qualified to conclude with support for one side over another, for all have their due merit. What this conversation does call for, however, is dialogue and interaction, for they propel progress, promote the issue, and engage the public. Indeed, approaches may differ, thoughts may differ, and beliefs may differ - but what is important is that all sides intend well. We can - or at least the author is willing to risk the naivete to - rest assured that individuals on the spectrum asking for acceptance and appreciation of their identity want the best for themselves, as much as the parents, relatives, caretakers, and professionals who devote themselves in the cause do for their loved ones. So long as respect and understanding prevail, and as conversations and debate persist, progress is made surely, in the right direction. //

 

References 

 

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.).

Washington, DC Baron-Cohen, S. (2019, April 30). The Concept of Neurodiversity Is Dividing the Autism Community. Retrieved November 23, 2020, from https://blogs.scientificamerican.com/observations/the-concept-of-neurodiversity-is-dividing-the-autism-community/ 

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Blume, H. (1998, September). Neurodiversity. Retrieved November 23, 2020, from

https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/ 

 

Caplan, B., Ph.D. (2005, May 31). Would you have allowed Bill Gates to be born? Retrieved November 23, 2020,

from https://www.nbcnews.com/id/wbna7899821 

 

Dawson, M. (2003, September 9). Bettelheim's Worst Crime: Autism and the Epidemic of Irresponsibility. Retrieved

November 23, 2020, from https://www.sentex.ca/~nexus23/md_01.html 

 

Dawson, M. (2004). THE MISBEHAVIOUR OF BEHAVIOURISTS: Ethical Challenges to the Autism-ABA Industry.

Retrieved November 23, 2020, from https://www.sentex.ca/~nexus23/naa_aba.html 

 

Grinker, R. R. (2009). Offit Paul: Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.

Journal of Autism and Developmental Disorders, 39(3), 544-546. doi:10.1007/s10803-008-0679-y

 

Harmon, A. (2004, December 20). How About Not 'Curing' Us, Some Autistics Are Pleading. Retrieved November

23, 2020, from https://www.nytimes.com/2004/12/20/health/how-about-not-curing-us-some-autistics-are-pleading.html 

 

Jaarsma, P., & Welin, S. (2011). Autism as a Natural Human Variation: Reflections on the Claims of the

Neurodiversity Movement. Health Care Analysis, 20(1), 20-30. doi:10.1007/s10728-011-0169-9

 

Ratner, P. (2019, January 30). Should Autism Be Cured or Is "Curing" Offensive? Retrieved November 23, 2020,

from https://bigthink.com/paul-ratner/should-autism-be-cured-or-is-curing-offfensive 

 

Silverman, C. (2008). Fieldwork on Another Planet: Social Science Perspectives on the Autism Spectrum.

BioSocieties, 3(3), 325-341. doi:10.1017/s1745855208006236

 

Sinclair, J. (1993). DON'T MOURN FOR US. Retrieved November 23, 2020, from

https://www.autreat.com/dont_mourn.html 

 

Singer, J. (1999). 'Why can't you be normal for once in your life?' From a 'problem with no name' to the emergence

of a new category of difference (chapter 7) (1075936754 817992580 M. FRENCH & 1075936755 817992580 S. CORKER, Eds.). In DISABILITY DISCOURSE (pp. 59-67). PHILADELPHIA, PA: OPEN UNIVERSITY PRESS.

 

Solomon, A. (2008, May 23). The New Wave of Autism Rights Activists -- New York Magazine - Nymag. Retrieved

November 23, 2020, from https://nymag.com/news/features/47225/