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(Not written by me) Mar 8, 2022 Professor Amanda Kirby Highlights Forgotten Neurodiversity Heroines On International Women’s Day Nancy Doyle Contributor Diversity, Equity & Inclusion I am an organizational psychologist specializing in neurodiversity. In celebration of International Women’s Day, it is becoming a trend to right the wrongs of the past and amplify the work of women who were erased from the popular discourse. Famous examples include Dr Rosalind Franklin, whose work on DNA was essential but was overlooked by the Nobel Prize committee when they awarded her colleagues, Crick, Watson and Wilkins in 1962. We are also aware of Ada Lovelace, who wrote the first algorithm, yet her boss Charles Babbage is hailed as the ‘father of computing’. Also regularly overlooked in STEM (science, technology, engineering, and mathematics) is Dr Gladys West who invented the core mathematical principles behind GPS technology. Neurodiversity And Sexism The social and medical sciences are not immune from historical sexism. We see this in the story of sociologist Judy Singer, who originated the concept of neurodiversity but is rarely referenced academically by the male academics who are now famous for their writing on the subject. Singer’s academic career was cut short by her position as a single parent raising an autistic child. Singer rightly criticizes the neurodiversity discourse around “pushy mothers” advocating for their kids and being chastized by professionals. What about the dads? Where are they? Why are we singling out only half the parents as responsible for their child’s welfare and then berating them for being hysterical and making up their problems? The layers of gender bias in neurodiversity are many and their tentacles stretch way beyond the diagnosis disparity. We might also suggest that the reason we have such a wide disparity in diagnosis between men and women is because the male scientists who have dominated the field have created the definitions and checklists from their own standpoint. Today, we acknowledge the many women sociologists, psychologists and physicians who have contributed to the neurodiversity narrative and advanced our mission without recognition and fame. Professor Amanda Kirby presents two women whose work she would like to amplify. Dr Grunya Sukhareva Professor Kirby states: “Introducing Dr Sukhareva. Perhaps you have not heard of her? Surprisingly I had not done so till recently. Two full decades before Hans Asperger and Leo Kanner published work relating to autism there was a Russian Jewish female doctor in Moscow who was ahead of the field.” Only in the past 4 years has this come to light with Spectrum News and the Scientific American reporting her findings from her 1925 published article: “It was 1924 when the 12-year-old boy was brought to the Moscow clinic for an evaluation. By all accounts, he was different from his peers. Other people did not interest him much, and he preferred the company of adults to that of children his own age. He never played with toys: He had taught himself to read by age 5 and spent his days reading everything he could instead. Thin and slouching, the boy moved slowly and awkwardly. He also suffered from anxiety and frequent stomach-aches.” Where Sukhareva worked children sometimes lived in a residential setting for 2-3 years having detailed interventions. This allowed her to observe their ‘behaviours’ first- hand and over a prolonged period. Over the course of the following year, Sukhareva identified five more boys with what she described as “autistic tendencies.” All five also showed a preference for their own inner world, yet each had their own peculiarities or talents. In 1925, she published a study describing in detail the autistic features the six boys shared and these directly mapped to the later DSM criteria, yet Dr Sukhareva is virtually missing from the history of autism. Professor Kirby explains how this happened: “Very little Russian research from that time was translated into other languages besides German. And although her 1925 paper on autism traits appeared in German the following year, the translation butchered her name, misspelling it as “Ssucharewa.” The paper was only translated into English nearly 70 years later. Interestingly it was translated into German it was likely that Asperger would have read it but he never referenced her work. It was translated into English in 1996.” Dr Esther Thelen Professor Kirby describes a second expert in developmental psychology to whom she thinks we should be indebted. This is Dr Esther Thelen. Professor Kirby explains Dr Thelen’s work: “Thelen's research in the 1980s was focused on human development, especially in infant development. We used to think that child development followed a set pattern from babyhood to toddler: reach, grasp, roll, sit, crawl and then walk (we call these developmental milestones). We used to think that if you didn’t follow the order, it was problematic. The description, prior to Thelen’s work of these milestones resulted in a view of motor development as a rather rigid process. Developmental milestones are a core component of diagnosing neurodevelopmental differences such as dyspraxia, dyslexia and autism. Thelen and her co-workers demonstrated that there was complex interplay between infants' bodies, their environment, and earlier experiences which impacted on the course of development. Specifically, through careful observation they determined that new born leg kicking patterns are affected by their weight, their context (lying, being held up, being in water) and it was these contexts determining their progress, rather than a natural order of development. Importantly, they showed there was not one single factor but a complex mesh of interactions with resulted in the outcome.” Professor Kirby draws the following conclusion from Dr Thelen’s work to the neurodiversity movement and the wider concepts involved in the social model of disability. “For me, this is fundamental to our understanding and provision of support for neurodivergent children and adults today in school or the workplace. We need to move to thinking of people with a diagnosis of dyslexia or autism for example as all needing the same support but always also thinking about the task the person is doing and the environment they are in as this will affect everyone differently.” Dr Thelen was quoted as saying "The mind simply does not exist as something decoupled from the body and experience," this sentence indicating the trend towards biopsychosocial, holistic understanding of human development. Dr Thelen was able to show that we develop as part of a dynamic and complex system and the environment we are in also interacts too and impacts on our development. Her theory called Dynamic Systems Theory proposes that movement is produced from the interaction of multiple sub-systems within the person, task, and environment). This is of great use to those being diagnosed with dyspraxia, dyslexia and others, as in doing so one's childhood history is analysed for missing skills or unusual trajectories. Dr Thelen's work helps us them determine interventions could help children develop skills that they need for independence. Professor Kirby Herself It would be remiss of me to not to mention Professor Kirby’s own work on dyspraxia (aka developmental coordination disorder(DCD)). Her research is world renowned and remains the only consistent academic reporting on this minority neurotype, which is present at similar levels in the population as ADHD and many times the prevalence of autism, yet remains under served. Professor Emeritus at the University of Cardiff, she has 2663 citations for her writing, showing how it has influenced others in the our field. Professor Kirby's work ensures that we don’t forget dyspraxic voices and helps us understand the routes of support required for dyspraxic adults. Thank you to these great women! Source: Forbes