As a lived experience organisation, we are dedicated to recognising and empowering neurodivergence in our community. Neurodivergence is a broad term that unifies a range of neurotypes that ‘diverge’ from normative social constructs. These include, among others, autism, dyslexia and ADHD, and often also includes mental health.
A person’s neurotype guides how they perceive and process the world. We all have a neurotype and the diversity of these neurotypes becomes the neurodiversity of humankind. We are collectively neurodiverse.
There is a growing body of evidence to suggest that the concept of a singular neurotypical brain, through which we can define normal human behaviour, is increasingly outdated. Societies change with time and across cultures and around 100,000 years ago certain new traits began to appear in the archaeological record. A focus on detail and invention, innovation and collaboration.
The colonisation of previously unoccupied regions was enabled through the creation of tools never seen before. Recordings were found of complex astronomical and anatomical systems and Upper Palaeolithic (around 50,000 years ago) art was often extraordinarily realistic and naturalistic. In areas where dependence on technology and innovation were vital for survival, such as Ice Age Europe, more of these new innovations were found.
And there was also social innovation, with the creation of legal systems and a focus on fairness and cooperation, that enabled smaller groups to work together to survive. These innovations could only have been created by individuals who diverged from the normal behaviour of their time.
People who were neurodivergent.
Modern human behaviour has been defined by the inclusion of neurodivergent thought processes, and yet in the modern day, we have defined neurodivergent people as abnormal, disordered, in need of ‘fixing’.
Many divergent neurotypes were first diagnosed in the early 1900s, ADHD (attention deficit hyperactivity disorder) for example in 1902 (George Frederic Still) and autism somewhat concurrently in 1938 (Hans Asperger) and 1943 (Leo Kanner). Word blindness was first identified a little earlier in 1877 (by Adolph Kussmaul) and became dyslexia a decade later in 1887 (Rudolf Berlin).
And with these diagnoses came the social context of their time.
Francis Galton, a key contributor to the development of Western psychology, and by extension psychotherapy, coined the term eugenics in 1883. A scientific and social movement, eugenics was defined as the science of racial betterment and drew on the assertion that overpopulation by the poor, and marginalised groups, was the cause of social problems. This movement proved very popular with the wealthy liberals and conservatives of the time and was central to the raising of racism and sexism as wholly ‘scientific’.
Eugenicists promised racial purity and the perfection of the ‘human’ race, drawing heavily on Charles Darwin’s theories of human evolution.
Charles Darwin was Francis Galton’s cousin.
This was not just a philosophical ideology. It became deeply embedded into the scientific and public culture of the time and eugenics experiments, such as denying life-saving treatment to minority groups in order to study ‘evolutionary resilience’, became common place, as they sought to strengthen the case of eugenics as the pinnacle of scientific endeavour.
Rape, particularly of non-white women by white men, was defensible according to Paul Popenoe and Roswell Hill Johnson, due to the superior genetic material of the white male. Their 1918 book Applied Eugenics can still be bought today, reprinted as recently as 2015.
Seeking to differentiate itself from psychoanalytic influences (such as Sigmund Freud), Western psychology began to focus on biological and evolutionary theories of behaviour. Drawing upon British eugenic theory, it was American psychology that began to define the meaning of a ‘healthy’ human being.
Between 1892 and 1947, there were 31 presidents of the American Psychological Association (APA) who were also the leaders of various eugenic societies, alongside a number who openly supported eugenics. This included Margaret Washburn, one of the few female APA presidents, who in 1923 published a paper that supposedly found a ‘striking’ lack of empathy in Jewish people when compared to their non-Jewish counterparts.
The use of large scale and military funded projects, such as the Army mental tests, allowed psychologist Carl Brigham in 1923 to ‘empirically’ establish inferior levels of intelligence in African Americans, non-Nordic immigrants, and Jews. Incidentally, Brigham also created the SAT (Scholastic Aptitude Test) for the College Board in 1926.
Eugenics embedded itself in the legal system and in the government.
This ‘scientific’ proof, created and perpetuated by the field of psychology, was used in legal cases to justify forced sterilisation, racial segregation, colonial policies, deportation and the
removal of voting rights from all but the elite. It dehumanised and destroyed and was the foundation of the racial purity campaign by Nazi scientists.
Western psychology’s dominant ideological force produced literature that was profoundly racist, sexist, homophobic, xenophobic, classist and ableist. The untold damage done to individuals and society has not, however, ended. This ideology is still prevalent in the psychological work and legal structures of today, though perhaps not as overtly stated.
As eugenics sought to define normal human functioning, psychologists began to document divergent neurotypes, as we know them today, as an aberration of behaviour and morality. ADHD, for example, was defined by George Frederic Still in 1902 as ‘an abnormal defect of moral control in children’.
Autism was first documented by Hans Asperger in 1938, in a group of children that he called ‘autistic psychopaths’, and there is some controversy as to whether Leo Kanner knew of Asperger’s work when Kanner published his famous paper on autism in 1943. Interestingly, Asperger’s colleague, Georg Frankl, emigrated to the USA in 1937 due to the anti-Jewish sentiment of Vienna at the time, where he joined Kanner at John Hopkins.
This culture of Jewish oppression in Austria was of benefit to Asperger, who was promoted over his more experienced Jewish counterparts, and the Vienna University Children’s Clinic became known for its Pan-German nationalist and Nazi predilections. Many of his contemporaries at the clinic, such as Erwin Jekelius, later became responsible for the deaths of thousands of psychiatric patients and mentally disabled children.
Whilst Asperger himself did not officially join the Nazi party, he was associated with a number of organisations sympathetic to the Nazi regime and was also involved in Hitler Youth. He publicly advocated for race hygiene policies, including forced sterilisation, and actively cooperated with the child ‘euthanasia’ programme, sending mentally ill and learning-disabled children to their deaths.
Asperger may have been one of the first to use the term, but his work did not reach mainstream literature until after his death (1980) when in 1981, Lorna Wing launched the term Asperger’s syndrome and concept of an autism spectrum.
In 1943, Kanner described autism as a combination of language problems, atypical non-verbal communication, atypical reaction to sensory stimuli, narrowly restricted interests, and desire for sameness. In 1944, Asperger published his definition of autism as a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest and clumsy movements.
Over the decades our definitions and descriptions have adapted to the prevailing social climate, but the emphasis has always remained that of ‘abnormal’, ‘disordered’ and ‘impaired’.
More recently, as we continue to explore the diversity of human experience and expression, the neurodiversity paradigm and concepts of social ecology have become more popular within neurodivergent communities.
In the late 1990s, Judy Singer coined the term neurodiversity, as the rise of the internet allowed autistic and neurodivergent individuals to connect on a scale never seen before. The neurodiversity paradigm came in 2012, as Nick Walker sought to challenge the dominant Galtonian perspective of restricted neurological, cognitive and developmental normality.
The neurodiversity paradigm acknowledges the benefit of neurological diversity for the species, just as diversity in ecological systems is necessary and beneficial. Instead of ranking individual fitness and ‘normal’ functioning, ecologists consider the relationships between organisms and how broader systems function as whole, including how dominance of some individuals can be harmful to the functioning of others.
Where Galtonian influenced psychology seeks to pathologize neurodivergence, social ecology, as defined by Robert Chapman, seeks to understand our interconnected complexity. There is no normal or abnormal, but a focus on how an individual’s environment enables or disables their functioning and how diversity can be of benefit to communities and social groups, such as problem solving for example. Inherent dysfunction becomes marginalised functioning.
When defined as medical pathology, it is reasonable to seek treatment, prevention or cure for autism, as it causes significant harm to the autistic person and those around them. When defined as neurodivergence however, it would be unethical to attempt to change the autistic person, in the same way that society now objects to gay conversion therapy, in the UK at least.
Applied Behaviour Analysis (ABA) was originally designed as gay conversion therapy, with its use in autism often based on the early work of Ole Lovaas who in 1974, referred to his autistic patients as ‘not persons in the psychological sense’. Whilst ABA can be varied in its practice, much of its work lies in the repression of autistic behaviour, potentially achieved using punishment as well as reward, so that all traces of autism are erased and the individual is normalised.
There has been very little research into the harms caused by the ‘treatment’ of autism, Henny Kupferstein found in 2018 that those who had received ABA in childhood had a greater incidence of PTSD (Post Traumatic Stress Disorder) than those who did not, though this work has been contested. A thematic analysis by Owen Mcgill and Anna Robinson in 2020 found that autistic adults tended to associate ABA with trauma and a long-term negative impact on their sense of self.
Sarah Cassidy (2019) has done excellent work investigating the correlation between masking of autistic traits and suicidality whilst Eilidh Cage (2017) has shown how autism acceptance (including autism friendly environments) increases wellbeing.
Overwhelmingly, the research literature has continued to show a callous disregard for the essential humanity of autistic people. A central defining concept of autism is that autistic people lack empathy and theory of mind (the ability to understand the desires, intentions and beliefs of others). Simon Baron Cohen, a leading autism researcher, defined theory of mind in 2001 as ‘one of the quintessential abilities that makes us human’.
Cohen seems content to perpetuate eugenicist theories that describe autistic people as less than human.
Ethicist Deborah Barnbaum, in her 2008 book entitled The Ethics of Autism, says ‘the absence of theory of mind dramatically affects the ability of the autistic individual to live a full life regardless of societal intervention’. On this basis, she considers it justified to use reproductive technologies to avoid the birth of a child with autism.
Theory of mind and empathy are an essay in themselves, however, perhaps there is a question of whether researchers and professionals should expect a show of empathy from people they clearly have none for. If researchers are unable show empathy, what does that say about their theoretical constructs of autism and the essential qualities of being human?
This is a very brief history of events and opinions that have not been widely circulated, and yet inform the biases of psychology and psychiatry today. As society, and industry in particular, begins to move towards a more inclusive approach to neurodivergence, it is concerning to see an adoption of ‘politically correct’ language with little underlying challenge of the cultural assumptions that we hold.
This will only continue to perpetuate division and harm. We are more alike than many care to admit. During the coronavirus pandemic, many people found solace in routines and became ‘obsessed’ with new interests. Many experienced sensory overload when adjusting back to ‘normal’. Many found socialisation awkward.
Instead of presuming neurodivergence as an impaired existence, why not consider the impact of an impaired environment on the neurodivergent?
There is infinite diversity of human appearance and experience, why not accept an infinite diversity of environmental and social needs?
One of the few opposing voices to eugenics in 1922, Gilbert Keith Chesterton, wrote in his book Eugenics and Other Evils, a phrase that is still relevant today. ‘Wealth, and the social science supported by wealth, had tried an inhuman experiment’.
Though perhaps ‘had’ is an overly optimistic statement. 100,000 years ago, our ancestors chose to accept and facilitate unique perceptions as a method of social evolution and survival. We can choose to do the same today, as we face the modern threats of our own creation – climate change, loss of biodiversity and the resurgence of far-right nationalistic sentiments.
Shantelle Svarc is a founding director of Darkside Rising CIC, alongside Annabel Hunt and Robert Willmington. She has worked for over a decade to support individual difference, first in academic provision and then through the inception of Darkside Training in 2014, a centre for women’s health and empowerment.
Diagnosed as autistic at the age of 31, Shantelle is passionate about the Lived Experience Leaders (LEx) Movement and is deeply involved in reframing the social constructs of normality. Recently taking Psychology credits at master’s level, she developed a greater understanding of the need for this reframing in society and in academia.
As Darkside Rising continues to develop and expand, Shantelle is planning her first book, Divergent, a collection of short essays that explore neurodivergent perception and challenge the dominant paradigms of autism and impairment. She is also involved in the development of Darkside Rising’s workplace wellbeing programme.
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