The neurodiversity paradigm challenges traditional views of autism and other conditions
In recent years, the concept of neurodiversity has challenged traditional medical views on neurodevelopmental disorders such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Although the movement has gained more attention recently, the term was first coined by Judy Singer in 1998. Neurodiversity refers to both a paradigm and a movement. The neurodiversity paradigm—in contrast to the medical paradigm—is a philosophical perspective, while the movement is a social push towards acceptance and accommodation. The neurodiversity movement includes many conditions, such as epilepsy and Tourette syndrome, and fits into a wider movement for disability rights, but it is most often applied in relation to autism, where there is still significant debate surrounding how we should define, approach, and treat the condition.
The neurodiversity movement is largely headed by researchers who are neurodivergent themselves. One prominent figure is Nick Walker who, in her blog titled Neuroqueer (previously known as Neurocosmopolitanism), describes neurodiversity as a biological fact, referring to the diversity of human minds. The term ‘neurodivergent’ describes a person whose mind functions atypically, while ‘neurotypical’ refers to those who are not neurodivergent. She defines the neurodiversity paradigm separately with the following core principles: 1) Neurodiversity is a natural and valuable form of diversity; 2) The idea of one ‘correct’ kind of cognitive functioning is socially constructed; and 3) The social dynamics surrounding neurodiversity are similar to those of other types of human diversity. For many, this paradigm helps people understand themselves better and works towards eradicating social stigma surrounding neurodivergence. Autistic people are also statistically more likely to identify as LGBTQ+, and as a result, the two movements sometimes overlap, with advocates proudly embracing both parts of their identities.
In contrast, the medical paradigm is the framing of autism and other conditions as disorders, and labelling autistic traits as symptoms that should be corrected. Defenders of this paradigm point out that some autistic traits make life and social bonding more difficult. However, many autistic traits that are viewed as abnormal, such as stimming (repetitive movements) or avoiding eye contact, don’t actually harm the autistic person and are difficult, if not impossible, to ‘fix.’ Instead, people often learn to mask neurodivergent traits to seem more ‘normal’ to neurotypical people. As part of the neurodiversity movement, many are moving towards ‘unmasking’: allowing neurodivergent traits to show instead of trying to act neurotypical.
The core question underlying this paradigm shift lies in whether or not autism, and other conditions that fall under neurodiversity, can, or should, be cured. Not only is there so much variety in autism spectrum disorders that most experts agree there is no single cure or across-the-board treatment, but many self-advocating autistic people point out that trying to cure autism is similar in spirit to gay conversion therapy. Similarly, the desire to find a cure carries the assumption that being autistic is fundamentally wrong, rather than a form of diversity. Some people, especially parents of autistic children with behavioural challenges, believe that finding a cure is worthwhile because autism can present a lot of challenges. However, from the neurodiversity standpoint, it is possible to acknowledge the challenges without finding a cure; autism is part of who a person is, and many would argue that treatment efforts should focus on accommodating and managing struggles that come with it, rather than trying to eliminate the autism.
While the language of neurodiversity is becoming more widespread, the research community is somewhat divided. At UofT, there is a variety of autism research across disciplines, with social sciences and humanities researchers looking at the social framing of disability, while molecular biologists and data scientists look at possible causes. For example, the Centre for Global Disability Studies (CGDS) at UofT Scarborough brings together students and researchers “conducting anti-ableist, intersectional, and interdisciplinary social science and humanities disability studies research from across all three UofT campuses.” UofT associate professor Susan Antebi studies perceptions of disability and difference, with a focus on post-revolutionary Mexico. Others focus on social aspects of autism specifically: Dr. Meng-Chuan Lai studies underdiagnosis in girls due to stereotypes, while Denver Brown co-authored a study on parental support and physical activity levels in autistic children.
Meanwhile, UofT molecular geneticist professor Benjamin Blencowe and other researchers have made several advances in investigating a mechanism underlying autism. They found that a particular microexon, which is a protein important for normal brain development, was misregulated in autistic brains, and that decreasing this protein in mice induced autistic-like social behaviours. They also found a network of genes related to this protein. Notably, this kind of breakthrough is rare in autism research; it is usually very difficult to find unifying factors that might lead to autism, yet this microexon seems to be lacking in a large number of autistic patients. However, the behaviours described as ‘autistic-like’ in mice may not be representative of autism in humans; this criticism regarding generalisation is common for animal studies. Nonetheless, understanding common mechanisms underlying autism could lead to a better understanding of the condition more generally.
Lastly, UofT researcher Stephen Scherer, as part of MSSNG, the world’s largest autism genomics project, “identified 18 new genes that increase risk for the condition” in 2017. MSSNG is a collaboration between Verily, DNAstack, SickKids, and Autism Speaks—the latter being an organisation which has been heavily criticised by the autistic community, despite its purported aim of helping autistic people. The genomics project is one example of research where the purpose is unclear; on the one hand, identifying a biological basis for the condition may lead to “better diagnostics, as well as personalised and more accurate treatments,” as the project’s webpage states. On the other hand, identifying genetic causes may raise concerns about interventions akin to eugenics. Currently, the project focuses on identifying potential subcategories of autism, creating a large database accessible to many researchers by using open consent, and providing information to families.
Importantly, there seems to be a lack of conversation between each of these domains. Social scientists study perceptions of disability, molecular biologists investigate potential mechanisms, and data scientists look for a genetic footprint using data from many individuals, but surely a complete understanding of autism would require an integrated account of these fields. Additionally, research led by neurodivergent individuals may bring a crucial perspective to the table. For example, a study led by Catherine Crompton shows that autistic peer-to-peer communication is highly effective; in other words, autistic people often only struggle to communicate with neurotypicals. This challenges the idea that autism causes ‘deficits’ in communication. With enough integration between fields and the inclusion of neurodivergent perspectives, the current shift away from medicalisation and towards a model of diversity and accommodation may help to combat social stigma while continuing to advance scientific understanding of autism, disability, and human neurodiversity.
