Darkest Before Dawn: Autism, Ableism, and the Rise of the Neurodiversity Movement18 min read

The struggles of various groups to achieve equal rights were a hallmark of life in the 20th century.  Indeed, from the Winnipeg General Strike[i], through the struggles for gender[ii] and LGBT equality[iii], the 1900s marked a century of change for many souls who– for various reasons– existed outside the traditionally-defined power structure of Western civilization.

Now, the beginning of the 21st century plays host to another such battle for equal recognition: the disability rights struggle in general and, specifically, the autistic-led Neurodiversity Movement.  These related fronts are often forgotten due to the ableist privilege experienced by most people in society, but they must not be overlooked.

The Cure and Crisis Narrative

Autism is, after all, widely portrayed as a health crisis of epidemic proportions by the mainstream media and this interpretation leaves little room for competing views.While the intentions of most people are good, however, the cure-and-crisis narrative serves primarily to embolden those who already possess privilege and, in fact, does more harm than good to autistics themselves.

It’s obvious how this could be the case; any human alive who is made to feel worthless or broken by institutional forces is bound to suffer adverse psychological effects.Throughout this piece, I will be exploring just how the cure and crisis narrative adversely impacts neurodivergent individuals, and how the Neurodiversity Movement has provided such people a voice with which to fight back.

Moreover, it will be made clear exactly how important the Neurodiversity Movement is for the well-being of autistics, those with ADHD, and indeed anyone else who falls outside of what is considered the neurodevelopmental “norm.”

Key Concepts for Understanding Social Justice Movements

Privilege

As with any other social justice topic, it is essential to first understand some key concepts in order to truly be able to engage with the material– chief among these being privilege.  As defined by Merriam-Webster, privilege is “a right or immunity granted as a peculiar benefit, advantage, or favor.”[iv]

This is, however, a rather limited definition in desperate need of elaboration.  In Privilege Revealed: How Invisible Preference Undermines America, author Stephanie Wildman illustrates the concept of privilege far more effectively, explaining how it consists of several related elements.

“First,” she argues, “the characteristics of the privileged group define the social norm, often benefiting those in the privileged group.  Second, privileged group members can rely on their privilege and avoid objecting to oppression.”[v]  

When one considers the state of mental health in our society, the merit of this definition becomes readily apparent.  Indeed, the reason most people are not aware of the challenges facing those who are disabled– or assume disability automatically equates with tragedy– is that such challenges are not part of the lived experience of a vast majority of people for whom acclimation to the world did not carry with it any serious difficulties.

Such people can avoid interacting with the discourse surrounding disability and also possess limited, stereotypical ideas of disability because in a very real way it does not exist in their world.  In this way, the characteristics of the non-disabled masses have come to define what is considered normal by society and allows them to avoid having the conversation necessary to improve things, leaving those with autism at a disadvantage as theirs is a condition that is not immediately visible.

Privilege becomes more ingrained and normalcy more assumed when faced with those who at first glance appear to look, behave, and think just like everyone else.

Author Christine Overall elaborates on the concept of disability identity in her article, “Old Age and Ageism, Impairment, and Ableism: Exploring the Conceptual and Material Connections.” In it, she illustrates how while most social theorists are more-than-willing to acknowledge that identity is socially constructed to a point (in the words of Simone de Beauvoir, one is not born, let alone conceived, a woman, an Aboriginal, a disabled person, or an elderly person but rather becomes those things), the line such academics draw in the sand is typically with regards to perceived core biological realities such as aging and disability.  People may adopt a disability identity, but it is as the result of a biological truth, according to most sociologists.  Overall, however, rejects this notion, arguing instead that such a perception serves to excuse and perpetuate oppression against disabled and elderly individuals.[vi]

This makes perfect sense – after all, if society had been left to its understanding that the female sex presented an inherent biological disadvantage, women would never have progressed as far as they have (though more progress is, of course, still needed).  Feminism rose to challenge this perception, and while biological differences will always be understood, they are gradually falling away as barriers to success.  Overall presents ageism and ableism as being comparable constructs.  Recognition of the socially-constructed nature of both identity and disability is therefore essential, as without this aspect, physical and mental health conditions are merely part of the life circumstances of many.  Social perception gives them worth in the best cases and takes it away in the worst.  This is especially true in the case of mental health conditions, as they are often constructed based on observation of behaviours in patients that fall outside the arbitrarily-decided social norm.  Normal is, after all, subjective.  In the words of the immortal Morticia Adams, “What is normal to the spider is chaos to the fly.”[vii] This leads perfectly into the next term in need of definition.

Neurodiversity

Neurodiversity, according to prominent autistic advocate John Elder Robinson, is the idea that conditions such as autism and ADHD are the result of natural brain variation rather than flaws to be corrected.[viii] When combined, it becomes evident how privilege and neurodiversity relate to each other in the context of disability rights, especially due to the prevalence of the cure-based narrative in pop culture and most academic literature.

The mainstream population, of course, is privileged in that their experiences of the world are shared by a majority of humans.  Those with mental health conditions, on the other hand, are routinely expected by society to conform to the diagnoses they have been given, along with all of the social perceptions that go with them.

In his article “Cultural Conceptions, Mental Disorders, and Social Roles: A Comparison of Germany and America,” author J.  Marshall Townsend refers to this effect as a self-fulfilling prophecy; diagnosing an individual with autism, for example, will result both in the public perceiving him/her in a specific way, as well as in the individual themselves rising to meet the expectations placed upon them.[ix]

This preconceived bias deprives disabled people and others of their agency.  As anyone familiar with feminism will know, such strictly-defined social roles and expectations are among the many ways that privilege is reinforced in society; and as has been previously established, things are no different in the context of mental health.

In this way, disabled individuals are not unlike others living outside the bounds of what is socially accepted, such as LGBTQ, people of colour and women since each group has at one time or another been the victim of power politics designed to give other groups privilege at their expense.

The History of Neurodiversity

To say that the history of those with neurodevelopmental conditions has been a dark one would be putting it mildly.  During the 1930s and 40s in Nazi Germany, for example, the government launched what was called the T4 initiative; a focused effort to use eugenics and selective breeding to eliminate certain traits deemed ‘undesirable’ from the human gene pool.

In practice, however, the T4 program routinely performed euthanasia against children and adults deemed ‘feeble-minded,’ ‘mentally retarded,’ and of course those on the autism spectrum.  The Nazis hoped to use the Aktion T-4 project (as it was officially known), to eliminate anyone with incurable chronic illnesses, and it was the assertion of author Steve Silberman that this program served as a template with which Hitler honed his final goal.

The Nazi party even developed a sanitized, clinical language for referring to the atrocities committed against disabled people, with the fatal act itself known as ‘final medical assistance.’[x] Conditions had not improved when Leo Kanner first published on the subject of the ‘unique’ disorder he referred to as autism.

Kanner described autism as being caused by cold, cruel parenting and found it almost inconceivable that those patients he saw whom he deemed to be autistic were as interested in their fixations as they seemed.[xi] As a result of this, early autistic treatments advocated for years of psychoanalysis and internment at a psychiatric institution for life[xii]; truly a tragic fate for those naturally born differently. 

The rise of parents’ groups and their hopes for a cure– while understandable and all-too-human– also did more harm than good for autistics.  The cause of this lay with a behaviourist by the name of Ole Ivar Lovaas.  Lovaas studied conditioning and applied it to the treatment of autistic individuals, a process he referred to as Applied Behaviour Analysis (ABA).[xiii]

On the surface, this intervention sounded promising, and it certainly encouraged parental groups at the time who found themselves clamoring for ways to apply Lovaas’ method to their children.  The practice becomes morally objectionable, however, when one considers the doctor’s own philosophy regarding people with autism.  The following is what he had to say in a 1974 Psychology Today interview:

You see, you start pretty much from scratch when you work with an autistic child.  You have a person in the physical sense– they have hair, a nose, a mouth– but they are not people in the psychological sense.  One way to look at the job of helping autistic kids is to see it as a matter of constructing a person.  You have the raw materials, but you have to build the person.[xiv]

Lovaas’ description of autistics is only the first indicator of the dark path his research took.  In the same interview, the doctor also described using electroshock and full body restraints on children he was treating if they continued to manifest autistic behaviour.  Beyond that, he was quite proud of himself and further justified the pain he caused his subjects in the name of giving parents a collaborative hope for their children’s futures.[xv]

If Lovaas’ views sound at all reprehensible in light of the current focus on understanding and compassion, then it has already become apparent to modern readers how harmful treatments for autistics have historically been.  According to philosopher Michel Foucault, however, individuals do not create power dynamics through their agency alone; indeed such intricate patterns of institutionalized power typically emerge from the interplay between various social groups and forces.[xvi]

Such nuanced power inequities also empowered Lovaas’ ABA treatment and the parents’ groups who embraced it.  After all, ever since Leo Kanner first co-discovered Autism with Hans Asperger, it has widely been seen as a terrible disease that has mystified researchers.[xvii] Given this negative reputation, it is not hard to believe that parents of autistic individuals were willing to give even a man as eccentric as Lovaas a chance to help their children.

Thus, ABA and Lovaas became institutionalized pillars of the fight against autism that endures to this day.  The problem, however, is that Lovaas’ method undermined the agency of autistic individuals on a fundamental level, since he considered them less-than-human in a psychological sense.  In order to commit egregious acts against other people, dehumanizing said people in some respect has always made abuse easier to justify, and this was exactly the position that autistic individuals found themselves in during the late part of the 20th century.

Autism is, of course, a spectrum, with many manifestations of the same or similar conditions.  Communications and social deficits typically characterize it, but how these appear varies based on the individual.[xviii] Therefore, no two cases are alike and it is ridiculous to assume, as Lovaas suggested, that autistics are incomplete humans.  The variety present on the Autism spectrum introduces another problem for those autistics who can pass as ‘normal’ and get by in mainstream society.

Indeed, many people are impacted by conditions such as autism and ADHD but are not visibly different from the majority.  According to the American Centers for Disease Control (CDC), 1 percent of the world’s population of roughly 7 billion humans has been diagnosed with Autism Spectrum Disorder and/or its various subtypes (Autism, Asperger’s Syndrome, PDD-NOS, etc.), which translates into 1 in 68 American births.[xix]

In addition to the number of kids on the Autism Spectrum shown above, 11% of children aged 4-17 also possessed a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) as of 2011.[xx] Most of those who form part of either of these groups (Autistics and those with ADHD) can survive in the everyday world with varying degrees of efficacy, and so are not typically thought of as ‘disabled’ for the purposes of additional assistance and accommodations. 

This ability to “pass” results in them experiencing a different form of harm – that of not being taken seriously by mainstream society as such individuals appear to be ‘normal.’  If people in this group do wish to receive assistance, they must ‘out’ themselves and self-advocate; a process which often results in institutionalized discrimination being directed at them in the guise of “providing help for those in need.” 

In extreme cases, this has even led to limitation of job prospects and loss of employment for the individuals in question.[xxi] Caught between a rock and a hard place, many such people most likely suffer in silence, unwilling to pay the high social cost required to both overcome their challenges and embrace their unique gifts.

It is into this complicated maelstrom of competing interests and focuses that Neurodiversity was born, and it is arguably one of the greatest moments for disabled people in modern history.  Neurodiverity originated in 1999 with author Judy Singer.

For me, the key significance of the ‘Autistic Spectrum’ lies in its call for and anticipation of a politics of neurological diversity, or what I want to call ‘Neurodiversity.’ The Neurologically Different represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability.”[xxii]-Judy Singer

What Singer could not have known in those early days, however, was how widespread and powerful the idea of Neurodiversity would become.  Since her first humble assertion of the concept, autistics and those with ADHD, among many others, have organized with the proliferation of the internet into coherent communities with stated goals and internal subcultures. 

The largest such group – the Autistic Self Advocacy Network – in fact pioneered the message of self-representation through their motto “nothing about us, without us.” They rose as a direct response to both historic abuses against autistic individuals and the empowering concept of Neurodiversity.[xxiii]Likewise, the online forum Wrong Planet has long served as a digital safe space for those with Autism, Aspergers, ADHD and various other conditions, allowing them to find comfort, companionship, and friends with similar life experiences.[xxiv] 

Pushback Against Neurodiversity

Neurodiversity as a concept has galvanized and inspired neurodivergent individuals worldwide to take back their existences from the parent’s groups and clinical researchers who have long sought to label, downplay, and otherwise limit their potentials.  Whereas organizations such as Autism Speaks have historically poured most of their operating budgets into cure-based autism research[xxv], autistics themselves had begun demanding recognition of their fundamental rights.

The stage had thus been set for a struggle between these two sides; one who advocated curing and eradication of those not deemed normal, and the other who promoted acceptance of the broad range of human experience.

This clash did emerge in December 2007, and it would mark a historic turning point for the relationship between neurodivergent individuals and the public perceptions stacked against them.  During the holiday season that year, ads were placed by the New York University Child Study Center around the city designed to promote discussion of childhood mental illness.

The ads targeted Autism, Asperger’s, OCD, ADHD, and many other conditions, and undoubtedly stemmed from a place of genuine concern; the problem, however, was with how they were worded.  “We have your son,” they began.  “We will make sure he will no longer be able to care for himself or interact socially as long as he lives.  This is only the beginning.  – Autism.”[xxvi]

The other diagnostic conditions’ ads were all worded slightly differently to reflect the factors affecting those with each, but the message was clear; having any one of these conditions made someone broken, and therefore in need of fixing.

Naturally, disability advocacy groups like the Autistic Self Advocacy Network were not thrilled.  According to Steve Silberman, “Autistics were challenging a conversation about autism in mainstream media without the help of a parent-run organization that claimed to speak for them.”[xxvii]

This public self-advocacy was revolutionary, since it was coming from a group perceived for so long to be unable to care and advocate for itself.  According to Ari Ne’eman, co-founder of ASAN, “These ads reflect some very old and damaging stereotypes about people with disabilities by suggesting that we are not entirely present and not fully within our own bodies.”[xxviii]

Indeed, he wasn’t wrong to make such an assertion, as these ads did in many ways perpetuate the stereotypes to which he referred.

Historically, those with disabilities had been portrayed as damaged ‘others’ in the public discourse, and so while the head of the Child Study Center at NYU did have in mind the honourable intention of combatting the stigma surrounding mental health, the ‘hostage ads,’ accomplished the opposite far more efficiently.

In light of this, the ads were eventually taken down[xxix], resulting in a significant victory for advocates of neurodiversity and disability rights.

After examining the brief and albeit-incomplete history of Autism, Asperger’s, ADHD, and the Neurodiversity movement presented here, it becomes clear that the movement towards acceptance and self-advocacy on the parts of individuals with neurodivergent brains is crucial. 

Moreso, it is rooted in the deep-seated oppression such people have long experienced at the hands of an ableist society.  Throughout the history of psychiatry – from the Nazis through to the modern day – those with psychiatric conditions have suffered at the hands of policy makers, clinicians, and parent/caregiver groups, each of which has had distinct ideas regarding what is in the best interests of those in their care and at their mercy. 

In light of this, the Neurodiversity Movement is essential as it represents the dawn of a discourse surrounding mental and behavioral health led by those who are affected rather than by those traditionally seen as their custodians. 

Given how little agency such people have historically had, the Neurodiversity Movement is all the more remarkable as it provides a very needed voice to those who have long been the victims of policy rather than the shapers. 

When one considers revolutionary history, it is even easier to be dismayed by the history of mental health.  After all, while “no taxation without representation” is a phrase implicitly understood to mean that the governed should be consulted in a political context[xxx], this same courtesy has not yet been fully extended to those with mental health conditions such as Autism and ADHD. 

Perhaps if it had, history would have been kinder to these individuals.  As it currently stands, however, the voice provided by the Neurodiversity movement is one in desperate need of being heard. 


References

[i] Canadian Public Health Association, “Fighting the Good Fight: Winnipeg General Strike of 1919,” http://www.cpha.ca/en/programs/history/achievements/10-sw/winnipeg.aspx.

[ii]  The Canadian Encyclopedia, “Women’s Movements in Canada,” http://www.thecanadianencyclopedia.ca/en/article/womens-movement/.

[iii]  American Psychological Association, “History of Lesbian, Gay and Bisexual Social Movements,” http://www.apa.org/pi/lgbt/resources/history.aspx.

[iv]  Merriam-Webster Online Dictionary, “Privilege,” https://www.merriam-webster.com/dictionary/privilege.

[v]  Stephanie Wildman, Privilege Revealed: How Invisible Preference Undermines America (New York: New York University Press, 1996), 24-26.

[vi] Christine Overall, “Old Age and Ageism, Impairment and Ableism: Exploring the Conceptual and Material Connections,” NWSA Journal vol.  18 no.  1 (Spring 2006): 126.

[vii] Goodreads, “Charles Addams – Quotes,” https://www.goodreads.com/quotes/707032-normal-is-an-illusion-what-is-normal-for-the-spider.

[viii]  Psychology Today, “What is Neurodiversity?” https://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity.

[ix] J.  Marshall Townsend, “Cultural Conceptions, Mental Disorders and Social Roles: A Comparison of Germany and America,” American Sociological Review 40, No.  6 (Dec.  1975): 739.

[x]  Steve Silberman, Neurotribes: The Legacy of Autism and the Future of Neurodiversity (New York: Penguin, 2015), 80-81.

[xi]  Silberman, 114.

[xii] Silberman, 121.

[xiii] Silberman, 171.

[xiv] Neurodiversity.com – Library of the History of Autism Research, Behaviourism and Psychiatry, “ ‘After you hit a child, you can’t just get up and leave him; you are hooked to that kid’ O.  Ivar Lovaas Interview with Paul Chance,” http://neurodiversity.com/library_chance_1974.html.

[xv] Ibid.

[xvi] Licia Carleson, “Cognitive Ableism and Disability Studies: Feminist Reflections on the History of Mental Retardation,” Hypatia vol.  16, no.  4 (2001): 125.

[xvii] Sliberman, 98-99.

[xviii] “Autism Spectrum Disorder,” in The Diagnostic And Statistical Manual of Mental Disorders Fifth Edition (Washington: American Psychiatric Association, 2013): 50.

[xix] Autism Society, “Facts and Statistics,” last updated August 26 2015, http://www.autism-society.org/what-is/facts-and-statistics/.

[xx] Centers for Disease Control and Prevention – Attention-Deficit Hyperactivity Disorder (ADHD), “Data and Statistics,” last updated Feb 2017.  https://www.cdc.gov/ncbddd/adhd/data.html.

[xxi] Kim Hall, “Feminism, Disability, and Empowerment,” NWSA Journal vol.  14 no.  3 (Autumn 2002): xi.

[xxii] Thomas Armstrong, The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain (Philadelphia: Da Capo Press, 2010): 13-14.

[xxiii] Autistic Self Advocacy Network, “About ASAN,” http://autisticadvocacy.org/home/about-asan/.

[xxiv] Wrong Planet, “About Wrong Planet,” http://wrongplanet.net/about-wrong-planet/.

[xxv] Autism Speaks Return of Organization Exempt From Income Tax, 2010, Form 990 OMB 1545-0047.

[xxvi] Robin Shulman, “Child Study Center Cancels Autism Ads,” Washington Post, December 20, 2007, http://www.washingtonpost.com/wp-dyn/content/article/2007/12/19/AR2007121902230.html.

[xxvii] Silberman, 275-76.

[xxviii]  Robim Shulman, “Child Study Center Cancels Autism Ads,” Washington Post, December 20, 2007, http://www.washingtonpost.com/wp-dyn/content/article/2007/12/19/AR2007121902230.html.

[xxix]  Ibid.

[xxx]   United States History, “No Taxation Without Representation,” http://www.u-s-history.com/pages/h640.html.

Works Cited

Primary Sources

American Psychiatric Association.  The Diagnostic and Statistical Manual of Mental Disorders 5th Edition.  Arlington: American Psychiatric Press, 2013.

Autistic Self Advocacy Network.  “About ASAN.” http://autisticadvocacy.org/home/about-asan/.

Autism Speaks Return of Organization Exempt From Income Tax, 2010, Form 990 OMB 1545-0047.

Autism Society.  “Facts and Statistics.” last updated August 26 2015.  http://www.autism-society.org/what-is/facts-and-statistics/.

Centers for Disease Control and Prevention – Attention-Deficit Hyperactivity Disorder (ADHD), “Data and Statistics,” last updated Feb 2017.  https://www.cdc.gov/ncbddd/adhd/data.html.

Goodreads.  “Charles Addams – Quotes.” https://www.goodreads.com/quotes/707032-normal-is-an-illusion-what-is-normal-for-the-spider.

Neurodiversity.com – Library of the History of Autism Research, Behaviourism and Psychiatry.

“‘After you hit a child, you can’t just get up and leave him; you are hooked to that kid’ O.  Ivar Lovaas Interview with Paul Chance.” http://neurodiversity.com/library_chance_1974.html.

Shulman, Robin.  “Child Study Center Cancels Autism Ads.” Washington Post. December 20, 2007.  http://www.washingtonpost.com/wp-dyn/content/article/2007/12/19/AR2007121902230.html.

Wrong Planet.  “About Wrong Planet.” http://wrongplanet.net/about-wrong-planet/.

Secondary Sources

American Psychological Association.  “History of Lesbian, Gay and Bisexual Social Movements.” http://www.apa.org/pi/lgbt/resources/history.aspx.

Armstrong, Thomas.  The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain.  Philedelphia: Da Capo Press, 2010.

Canadian Public Health Association.  “Fighting the Good Fight: Winnipeg General Strike of 1919.” http://www.cpha.ca/en/programs/history/achievements/10-sw/winnipeg.aspx.

The Canadian Encyclopedia.  “Women’s Movements in Canada.” http://www.thecanadianencyclopedia.ca/en/article/womens-movement/.

Carleson, Licia.  “Cognitive Ableism and Disability Studies: Feminist Reflections on the History of Mental Retardation.” Hypatia vol.  16, no.  4 (2001): 124-146.

Merriam-Webster Online Dictionary.  “Privilege.” https://www.merriam-webster.com/dictionary/privilege.

Overall, Christine.  “Old Age and Ageism, Impairment and Ableism: Exploring the Conceptual and Material Connections.” NWSA Journal vol.  18 no.  1 (Spring 2006): 126-137.

Psychology Today.  “What is Neurodiversity?” https://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity.

Hall, Kim.  “Feminism, Disability, and Empowerment.” NWSA Journal vol.  14 no.  3 (Autumn 2002): vii-xiii.

Silberman, Steve.  Neurotribes: The Legacy of Autism and the Future of Neurodiversity.  New York: Penguin, 2015.

Townsend, J.  Marshall.  “Cultural Conceptions, Mental Disorders and Social Roles: A Comparison of Germany and America.” American Sociological Review 40, No.  6 (Dec 1975): 739-752.

United States History.  “No Taxation Without Representation.” http://www.u-s-history.com/pages/h640.html.

Wildman, Stephanie.  Privilege Revealed: How Invisible Preference Undermines America.  New York: New York University Press, 1996.

Adam Mardero

Adam is a 31 year old writer, Aspie, and Neurodiversity advocate living in Sudbury, Ontario, Canada. He was diagnosed with Asperger's disorder at age 9 and began his blog Differently Wired seven years ago as a way to reclaim his place on the spectrum from prejudice. He did altogether too much school, holding a Master of Arts in History and a Bachelor of Education. Adam is also a huge nerd, and can usually be found reading science fiction, playing video games, and lurking on Reddit. He dreams of a world where Neurodiversity is accepted as a valid and normal part of being human.

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