Learning Objectives
By the end of this section, you will
- Critically analyze the Western biomedical deficit paradigm of autism and its effects on the lives of autistic individuals and their loved ones
- Consider the ways that ‘normal’ is constructed in society
- Explore alternative approaches by interacting with films and zines created by autistic story creators from the project
Unsettling dominant representations of autism in education, health and everyday life means troubling the legacy of the Western deficit paradigm of autism and disability and its effects, the topic of this section. There are many powerful stories about autism already circulating in the world. The most prevalent of these is the Western biomedical paradigm.
Approaches within this paradigm (including psychiatry, developmental psychology, education, biogenetics, etc.) understand autism as disordered development that results in deficits in communication, social interaction and behaviour (Douglas et al., 2021).
Within the Western biomedical paradigm, autistic people are understood as not quite human because they are thought to lack empathy, and autism is understood as a pathology that needs to be fixed, often by remedial or therapeutic means.
Stories made on the Re•Storying project push back against deficit approaches and dehumanizing stereotypes, including the notion that autistic people do not have empathy or are not social.
Below, we share a film and zine (do it yourself activist magazines) that depict some of the effects of life under Western deficit regimes—practices, policies and understandings that pathologize autistic difference.
We remind our audiences of our earlier invitation to behold films and zines through a practice of care-full neuro-crip reading. This might mean skipping videos or zine pages, reading slowly, taking a break, stimming, or something else that makes you feel comfortable (The Re•Storying Autism Collective, 2022a).
Autism and Autism Mothers
Activity
Powerful stereotypes circulate about autism and autism mothers. Do you recognize any of them circulating in the stories below?
Digital Story: Memories by Katherine Runswick-Cole and Penny Fogg
Consider This
Would you add any other stereotypes about autism and autism mothers to our list below?
- A ‘normal’ child who has been lost, stolen, trapped or imprisoned by autism.
- A computer-like person (who is most often male and white) who lacks empathy or is violent.
- An environmental illness or vaccine injury.
- Autism mother ‘warriors’ who stop at nothing (including harmful treatments) to save their child from autism.
Want to Know More About Autism and Autism Mother Stereotypes?
Chapman, R. (2023). Empire of Normality: Neurodiversity and Capitalism. Pluto Press.
Douglas, P. (2014). Refrigerator mothers. Journal of the Motherhood Initiative, 5(1), 94-114. https://jarm.journals.yorku.ca/index.php/jarm/article/view/39328/35657
Douglas, P. & Klar, E. (2019). Beyond disordered brains and mother blame: Critical issues in autism and mothering. In L. O. Hallstein, A. O’Reilly, and M. Vandenbeld Giles (Eds.). Routledge Motherhood Companion (pp. 205-214). Routledge.
Douglas, P.,Runswick-Cole, K., Ryan, S. & Fogg, P. (2021). Mad mothering: Learning from the intersections of madness, mothering and disability. Journal of Literary and Cultural Disability Studies, 15(1), 39-56.
Douglas, P., Runswick-Cole, K., Fogg, P. & Ryan, S. (2022). Making memories, making madness: Mad (m)others of disabled children write back through digital storytelling. Journal on Developmental Disabilities, 27(2), 1-19. https://doi.org/10.5281/zenodo.6502811
Douglas, P.(2024). Unmothering autism: Ethical disruptions and affirming care. Disability, Culture and Politics Series. University of British Columbia Press.
McGuire, A. (2016). War on autism: On the cultural logic of normative violence. University of Michigan Press.
Re•Storying Autism Collective (Liska, S., Douglas, P., Singer, K., Gillespie, E., & Peters, S). (2022a). Autistic, Surviving, and Thriving Under COVID-19: Imagining Inclusive Autistic Futures—A Zine Making Project. Lateral (2469-4053), 11(2). https://doi.org/10.25158/L11.2.8
Silverman, C. (2011). Understanding autism: Parents, doctors, and the history of a disorder. Princeton University Press.
Yergeau, R. (2017). Authoring autism: On rhetoric and neurological queerness. Duke University Press.
Autism as Problem to Be Fixed
Within the Western biomedical paradigm, autism is storied as a problem of disordered brains and behaviour to be fixed, prevented, or cured and as a medical condition where autistic traits (e.g., stimming, atypical eye contact) are understood as abnormal human development and deficits.
The Western biomedical paradigm also intersects with ableist, settler colonialist and capitalist knowledge systems including developmentalism—the powerful idea that every human (and society and economy) should develop in the same way. The goal of development is to achieve— or at least approximate—the mythical normal human who aligns with Western values and ideas such as capitalist productivity, human perfectibility and neuro-normativity.
Digital Story: Weschler by A. Steacy Easton
Did You Know?
The Diagnostic and Statistical Manual of Mental Disorders of the (DSM-V) of the American Psychiatric Association publishes one of the most widely used set of criteria to diagnose autism in North America. In the DSM-V, autism, or autism spectrum disorder, is defined in deficit terms as “persistent deficits in social communication and social interaction across multiple contexts” and “restrictive, repetitive behaviours, interests, and activities.”
This powerful idea underpins the DSM-V and other diagnostic criteria such as the International Classification of Disorders as well as many educational practices, pedagogies, and norms of communication, interaction, and movement in schools. Instead, our approach aligns with critical disability studies, critical arts-based and post humanist thinkers in challenging the mythical (humanist) human animating Western education, health, and economic systems (see, for example, Braidotti, 2013).
Consider This
How might Western biomedical approaches such as this one and the DSM-V influence practice in schools?
The International Classification of Diseases (ICD-11) of the World Health Organization defines autism spectrum disorder as “characterised by persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication, and by a range of restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual’s age and sociocultural context.”
Ableism
Autistic self-advocates and critical scholars have been resisting the pathology and deficit focus of the Western biomedical paradigm for some decades. They describe how this approach is rooted in ableism, the systemic and ideological privileging and valuing of what is considered normal ability as defined by Western biomedicine and developmentalist theories, and capitalist economies.
Interventions that aim to normalize autistic individuals, such as intensive early behavioural intervention, or Applied Behavioural Analysis, are also rooted in the ableist and settler colonialist underpinnings of the Western biomedical paradigm and its imperative to fix ‘abnormal’ development (Gibson & Douglas, 2018; Gruson-Wood, 2016; Marshall, 2017; Milton, 2018, 2020). This does not mean that autistic individuals do not want or deserve support, therapies or other help, but that dominant Western approaches are grounded in deficit perspectives.
Consider This
Not making ‘normal’ eye contact, rocking, flapping and ‘obsessive’ interests are seen as deficits and signs of autism within the biomedical paradigm.
What if non-normative eye contact, movement and intense special interests were understood instead as different and valuable ways of communicating, moving and being social?
How might this change the way autistic individuals are understood and supported in schools, clinics, communities and beyond?
Racism and Colonialism
Autistic and other scholars working in disability studies, critical neurodiversity studies, Indigenous disability studies (see Ineese-Nash, 2020) and critical race studies also describe the racist and colonialist nature of the Western biomedical paradigm and diagnostic practices, which rank and sort human beings along race and ability lines.
Until very recently, Indigenous, Black, and other autistics of colour have been excluded from autism diagnosis and access to autism supports. Instead, individuals from these communities were given (and continue to be given) less ‘desirable’ or ‘improvable’ labels (Douglas, 2024) such as behavioural disorders (Brownell et al., 2019).
This means that autistic Indigenous, Black and other students of colour are disproportionately placed in lower quality special education programs that limit post-secondary opportunities, are subjected to increased surveillance, and are at higher risk of apprehension by child welfare systems (including apprehension into foster care) and subjection to the school to prison pipeline. Autistic students and their families and kin are not only excluded from culturally safe autism diagnosis and supports in this way but are subjected to racialized logics.
Consider This
Like in Walter’s story, fetal alcohol spectrum disorder and behavioural disorder labels have often been assigned to Indigenous individuals at a higher rate than white, middle-class families.
‘Bad’ parents, especially mothers, are blamed, while contexts of settler colonialism, ableism and racism are ignored. These labels often come with less supports than an autism diagnosis.
- How is racism operating in these diagnostic practices?
Activity
Check out the videos and zines below that bring to life and push back against some of the ways autism has been made into a problem through the western biomedical paradigm.
A gentle content note: Some stories depict difficult or painful experiences. Please care for yourself in whatever way makes you feel comfortable and safe: skip over difficult parts, have a comfort item close by, or share with a trusted person.
Final Reflection:
Think of other places and spaces where people talk about or engage with autistic individuals in ways that reflect the Western biomedical paradigm and deficit stories.
References and Related Readings
References
Braidotti, R. (2013). The posthuman. Polity.
Brownell, M., Enns, J. E., Hanlon-Dearman, A., Chateau, D., Phillips-Beck, W., Singal, D., … & Roos, N. (2019). Health, social, education, and justice outcomes of Manitoba First Nations children diagnosed with fetal alcohol spectrum disorder: A population-based cohort study of linked administrative data. The Canadian Journal of Psychiatry, 64(9), 611-620.
Douglas, P., Runswick-Cole, K., Ryan, S. & Fogg, P. (2021). Mad mothering: Learning from the intersections of madness, mothering and disability. Journal of Literary and Cultural Disability Studies, 15(1), 39-56.
Douglas, P.(2024). Unmothering autism: Ethical disruptions and affirming care. Disability, Culture and Politics Series. University of British Columbia Press.
Gibson, M. F., & Douglas, P. (2018). Disturbing behaviours: Ole Ivar Lovaas and the queer history of autism science. Catalyst: Feminism, Theory, Technoscience 4 (2). https://doi.org/10.28968/cftt.v4i2.29579
Gruson-Wood, J. F. (2016). Autism, expert discourses, and subjectification: A critical examination of applied behavioural therapies. Studies in Social Justice, 10(1), 38-58. https://doi.org/10.26522/ssj.v10i1.1331
Ineese-Nash, N. (2020). Disability as a colonial construct: The missing discourse of culture in conceptualizations of disabled Indigenous children. Canadian Journal of Disability Studies, 9(3), 28-51.
Marshall, N. (2017). Child and youth care and disability rights: Listening to young people, challenging our practice. Relational Child & Youth Care Practice, 30(2), 55-69.
Milton, D. (2018). A critique of the use of Applied Behavioural Analysis. (ABA): On behalf of the Neurodiversity Manifesto Steering Group. https://kar.kent.ac.uk/69268/1/Applied%20behaviour%20analysis.pdf
Milton, D. (2020). Applied Behavioural Analysis and the autistic community: Time to listen. In: Are we asking the right questions about behaviour? Studio3 Web Conference, 21 Oct 2020. https://kar.kent.ac.uk/83599/
Re•Storying Autism Collective (Liska, S., Douglas, P., Singer, K., Gillespie, E., & Peters, S). (2022a). Autistic, Surviving, and Thriving Under COVID-19: Imagining Inclusive Autistic Futures—A Zine Making Project. Lateral (2469-4053), 11(2). https://doi.org/10.25158/L11.2.8
A small, knitted, cup-shaped container sits on a blue cloth surface to the left of the frame. Inside the container is a bunch of small, plastic pill trays in different colors. Next to it, to the right, is a small, dark blue sign with the white text “Thank you for visiting us! Help yourself to a small souvenir!” with a small text bubble to the right saying, “Stim Freely!”
