Learning Objectives
- Understand the critical neurodiversity paradigm and its implications for transforming education research and practice
- Appreciate how difference affirming story-making connects us across difference, cultivates alliances and shifts deficit perspectives
- Learn about the Re•Storying Autism Collective and its arts-based research
- Deeply reflect on artist Claire Johnston’s intergenerational family story about ‘Piitoshi-iteeyihtam’ (Michif word meaning ‘one who thinks differently’) and the implications of centering Indigenous approaches to autism
We believe that story has the power to change hearts, minds and worlds (Douglas et al., 2021; Rice, Chandler & Changfoot, 2016; Springgay, 2008, 2022). This means expanding and affirming what it means to be human beyond the limits of Western biomedicine, developmentalism and the myth of the normal human.
Since 2016, Re•Storying Autism has been holding online and in person story-making workshops with autistic community and allies (educators, family, and kin) in northern Turtle Island, Aotearoa New Zealand and England (Douglas et al., 2021). These workshops hold space alongside autistic people and their loved ones for people to tell their stories and move them into the world on their/our own terms.
Participants in our storytelling workshops are often from multiply marginalized communities and have included Māori whānau (family) and takiwātanga storytellers from Aotearoa, Red River Métis, Cree, and other Indigenous story makers from Manitoba, and queer, trans, non-binary, and other autistic communities in Ontario, Manitoba and beyond.
Moving stories made in our workshop[s into world to make social change includes bringing films and zines to training sessions for educators, educational assistants, educational leaders, policymakers, clinicians, family members and more across Canada, New Zealand, England and beyond (Re•Storying Autism Collective, 2022a; Re•Storying Autism Collective, 2022b).
Stories made in our workshops sometimes depict difficult experiences including systemic ableism, racism, school violence, exclusion, misunderstanding and/or stigma (Re•Storying Autism Collective, 2022a; Straus, Douglas & Rice, under review).
Many stories push back against Western biomedicine and negative stereotypes of autism to re-story, celebrate and embrace autism as a valued and valuable difference. Other stories made by parents—for example, videos made in the mad (m)others series of videos and publications—push back against the Western ‘autism mother’ stereotype as a ‘hero’ or ‘warrior’ who must save her child (and the world) at any cost (Douglas, 2024; Douglas et al., 2021; 2022; Runswick-Cole et al., 2024).
We affirm the work of story-making and the films and zines made on the project as “disability love stories” (Douglas et al., 2021), a phrase suggested by Dr. Julia Gruson-Wood in one of our storytelling workshops. This is not to gloss over difficult autistic bodymind experiences or experiences of systemic oppression, but to acknowledge the courageous, vulnerable, sometimes difficult and relational work of story-making to change worlds—whether as testimony of experiences of exclusion, or stories reimagining autism and education in new and affirming ways.
Below, we share several films made on the project. Some of them were made by autistic participants, while other were made by allies (mothers, siblings, and educators).
Join Us!
The Re•Storying Collective is an online group of 60+ autistic and other neurodivergent artists, activists and students, and allies from Canada, the UK and beyond.
We were founded in March 2020 at the start of the COVID-19 pandemic as a space for connection, mentorship, creative research and activism, and to dream about a just world where everyone belongs.
The Collective advises on research priorities and leads its own creative research initiatives. In 2021-2022, the Collective led an interview and zine making project called Autistic, Surviving and Thriving Under COVID-19: Imagining Inclusive Autistic Futures.
This included producing a set of 11 digital and physical zines, a co-authored publication and art gallery exhibit at Tangled Art + Disability in Toronto, Ontario. Zines also travelled to the Canadian Museum of Human Rights the same year.
In 2024, The Collective is currently collecting stories on a collaborative project and exhibit called The Report Card Project to speak back to deficit paradigms and language embedded in educational assessment and evaluation.
You can contact the Collective for more information about how to get involved here [email protected].
Digital Stories
We again invite beholders to ask,
- What is the storyteller asking us to see, hear, feel or sense that might be new?
- How might these stories change you and the world?
- Who else needs to see these videos?
A Difference-Affirming Approach
Our project and storytelling workshops are framed through a “difference-affirming” approach (Rice & Mündel, 2018, p. 227; Re•Storying Collective, 2022a). This approach to autism draws on several academic fields—neomaterialist philosophy, critical autism studies, critical neurodiversity studies and decolonizing methods—to unsettle Western understandings of autism. For example, Māori, Red River Metis and Ojibway approaches to autism are wholistic and strengths-based, and embrace understandings of autism, disability and all individuals as cherished gifts to the community who do not need to be fixed (Ineese-Nash, 2020; Douglas et al., under review).
This is different than the Western deficit paradigm, which aims to identify and ‘fix’ autism as disordered brains or behaviour. A difference-affirming approach understands autism and all bodymind difference as a deeply embodied and enminded experience that is entangled with—or produced—as positive or negative through different material and discursive contexts.
These contexts include prevailing stories of autism (like the Western biomedical model), physical environments of schooling, and more. For example, autistic ‘deficits’ are often produced in Westernized contexts through inhospitable sensory environments, misunderstanding and violence at school. A difference-affirming approach understands experiences such as this not as natural or given, but as storied and produced (for further reading see Douglas et al., 2021; Re•Storying Autism Collective, 2022a, 2022b).
A difference-affirming approach also aligns with the neurodiversity paradigm and its many contributions (Armstrong, 2015; Botha et al., 2024; Chapman, 2020; 2023; Livingstone et al., 2023; Walker, 2021). Neurodiversity describes the infinite variety and diversity in how humans think, feel, perceive, respond to and create our shared world.
Neurodiversity Paradigm
The neurodiversity paradigm, as described by autistic self-advocates (also see above), stresses the importance of accepting and celebrating individuals for who they are and supporting them in accessing all aspects of education, life and their communities. This paradigm uses the term neurodivergence to describe people whose way of being departs from what is understood to be neuro-normative or what is considered typical.
In the neurodiversity paradigm, autism means a different and valid way of interacting, communicating, and acting that does not need to be changed or cured. Autistic people deserve support and access to education life and have much to contribute (Botha et al., 2024; Kapp, 2020; Livingstone et al, 2023; Walker, 2021).
The Neurodiversity Movement, advocating for rights for autistic and other neurodivergent people, emerged within North America and elsewhere (New Zealand, England) in the 1980s and 1990s. This is a vital self-advocacy and human rights movement that supports and advocates for fundamental human rights, access to life and justice for autistic and other neurodivergent people.
The neurodiversity movement has made significant positive contributions to reframing deficit stories of autism and advancing inclusion and accessibility in education, work, healthcare and more. Recently, the movement has been (rightly) criticized for excluding the experiences and leadership of autistics of colour (Russell, 2020; Piepzna-Samarasinha, 2018).
Initiatives like Fidgets and Fries (https://www.fidgetsandfries.co/) and the Colour of Autism Foundation (https://thecolorofautism.org/about-us/) are speaking out and bringing diverse perspectives to the centre of their work.
Importantly, neurodiversity is not a new concept. Since time immemorial, many Indigenous communities across Turtle Island, Aotearoa and elsewhere have affirmed neuro- and other difference—including what is currently called autism—as fundamental to the diversity of human existence (see, for example, Bruno, 2023). Language honoring neurodiversity and neurodivergent individuals has also recently been reclaimed by Māori (see takiwātanga above), Plains Cree and Red River Métis nations (see below), among others.
Consider This
The Michif word, Piitoshi-iteeyihtam (pee-toe-she-e-tay-yee-tam), means one who thinks differently (no deficit).
This word was gifted to Claire Johnston, one of the co-authors of this module by Heather Souter, Michif language revitilizationist and faculty member at the University of Winnipeg.
Starting from a place of no deficit:
- How might practice change in schools, libraries, science centres, art galleries, theatres, medical clinics and beyond?
- What feelings does the word Piitoshi-iteeyihtam elicit versus the Western biomedical model of autism?
We wish to express our gratitude for the gift of this word in this module and ask for our audiences to receive the word with respect and care.
It cannot yet be fully known what it means to reclaim and re-centre cultural understandings of autism and neurodiversity. Several projects, initiatives, art, and publications are emerging exploring what it means to decolonize autism (Douglas & Peters, 2022; Bruno et al., 2023).
Claire Johnston, a Piitoshi-iteeyihtam two spirit beadwork artist from Winnipeg, Manitoba, Canada, for example, is reclaiming and re-affirming the generativity and creativity of neurodivergent ways of being through intergenerational stories and beadwork. Read their story below.
Activity
When you read Claire’s story, how does it make you feel? Is there someone in your own life who has passed down affirming understandings of autism? Write your own intergenerational story of autism as a gift or creative force.
Claire Johnston’s Story
Ever since I can remember, my father Roy Johnston taught me to create with my hands. By the age of 9, together, we had created a single reed flute, a miniature cable car bridge, a wooden swing, and countless other projects.
Dreaming, problem-solving and creating have always been our way of existing in the Métis Johnston family line. This can be seen in our homes through the material art passed on from one generation to the next.
My father grew up creating with his father Ed Johnston, who from a young age, handmade fiddles, long guns, furniture, and much more. For us, to be alive is to dream and create in our own space and time.
Our differences as individuals are often where our gifts are held. As a Piitoshi-iteeyihtam artist, the order, repetition, and use of bright colours in Métis beadwork feel natural and therapeutic to me. I can often reach a flow state, where I am happily able to bead for between 6-8 hours consecutively with very few breaks.
In addition to my own beadwork practice, I teach Métis beading workshops. When I teach, I talk about why I create, and I ask others to share why they do. I try to create a space where difference is accepted and celebrated.
Our gifts have been given to us because the world needs them. By creating spaces in society where difference is decolonized and valued, whether it is neuro-differences, sexuality, gender, or other ways of experiencing the world, the gifts we are all meant to share with the world can be unlocked.
While my family and ancestors have always had special gifts to share, these gifts haven’t always been acknowledged or honoured by the outside world, notably due to racism, classism, and ableism.
My father and grandfather have always created quietly with the intention of helping others, and not for external recognition. Although my father and grandfather are two of the most brilliant and gifted artists I have ever known, my father never received his high school diploma, and my grandfather only received a grade 6 education due to the vicious treatment he experienced at school in Winnipeg.
Through my beadwork, I pay homage to my paternal (and maternal) Métis ancestors, who gave me the gift of my mind and my hands. I proclaim my ancestors, including my father and my grandfather as Piitoshi-iteeyihtam artists and now I work to tell the story of our family in the best way I know how.
Note: ‘Piitoshi-iteeyihtam’ is a Michif word that was generously shared with Claire by Heather Souter, Michif language revitilizationist and faculty member at the University of Winnipeg. It means “one who thinks differently” (no deficit). As Claire seeks to understand more about herself and her family, she has engaged in gathering stories and words from people in her community to describe herself and others who think differently from a Michif worldview.
Wrapping Up
The Re•Storying Autism project collaborates with autistic individuals, activists, artists and critical allies to reimagine autism, educational practice, care and research in more expansive, affirming ways. Our storytelling workshops, the work of the Collective and our creative events hold space to tell and make new (love) stories in the world.
Culminating Activity: What’s Your Disability Love Story?
Using one of the prompts below, write your own disability love story.
These prompts were created by Dr. Julia Gruson-Wood during a Re•Storying Autism workshop facilitated by Patty Douglas and the Re•Vision Centre in Toronto, 2019. The prompts have travelled across various projects, contexts (classrooms, teacher trainings) and other modules.
Suggested Instructions:
Start each sentence with a prompt of your choosing, and ‘free write’ for 10 minutes. If you get stuck, write down whatever comes to mind, and/or return to your chosen prompt (for example, “I am stuck, don’t know what to write, la la la…you wouldn’t believe me….”). You can also share part of your story with someone you love and trust, or turn it into a script, add artwork or visuals, sound and make it into a video!
- You wouldn’t believe me…
- If I knew then what I know now…
- Why?
- What makes me angry…
- I dream…
- Why…
- What if I knew…
- They told me…
- What I understand now…/If I only knew then
If you are interested in making your own story, here is a wonderful online guide from the Re•Vision Centre for Art and Social Justice www.revisionstorymaking.ca.
Stay tuned for ongoing updates to this module from the Re•Storying Autism project!
References and resources
References
Armstrong, T. (2015). The myth of the normal brain: Embracing neurodiversity. American Medical Association Journal of Ethics 17(4), 348–352.
Botha, M., Chapman, R., Giwa Onaiwu, M., Kapp, S. K., et al. (2024). The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory. Autism, 13623613241237871.
Bruno, G., Chan, T. A., Zwaigenbaum, L., Coombs, E., Indigenous Relations Circle, & Nicholas, D. (2023). Indigenous autism in Canada: A scoping review. Journal of Autism and Developmental Disorders, 1-14.
Chapman, R. (2020). Defining neurodiversity for research and practice. In Neurodiversity studies (pp. 218-220). Routledge. Chapman, R. (2023). Empire of normality: Neurodiversity and capitalism. Pluto Press.
Douglas, P. (2024). Unmothering autism: Ethical disruptions and affirming care. Disability, Culture and Politics Series. University of British Columbia Press.
Douglas, P., Orsini, M., & Klar, E. (2021). Five ways to challenge systemic ableism during Autism Acceptance Month. The Conversation, 21 April.
Douglas, P. & Peters, S. (2022). Decolonizing stories of autism in education. Brandon University Research Connection. https://www.brandonu.ca/research-connection/article/decolonizing-stories-of-autism-in-education/
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., Rice, C., Gibson, M., Hastie, J., & Shields, R. (Under Review). Beyond ‘Inclusionism’: Unmaking and Remaking Autism and Inclusion through Creative Research. Practicing the Social. Wilfred Laurier Press.
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.
Kapp, S. (Ed.) (2020). Autistic community and the neurodiversity movement stories from the frontline. Palgrave MacMillan. https://doi.org/10.1007/978-981-13-8437-0
Livingstone, B., Gibson, M. F., Douglas, P., Leo, S., & Gruson-Wood, J. (2023). Weighing In: Academic Writers on Neurodiversity. International Journal of Disability & Social Justice, 3(3).
Piepzna-Samarasinha, L. L. (2018). Care work dreaming disability justice. Arsenal Pulp 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).
Re•Storying Autism Collective (Shields, R., Easton, S., Gruson-Wood, J., Gibson, M. F., Douglas, P. & Rice, C.). (2022b). Storytelling methods on the move. Special Issue, Critical Autism Studies: Methodological Incursions (Eds. A. Broderick and R. Roscigno). International Journal of Qualitative Studies in Education.
Rice, C., Chandler, E., & Changfoot, N. (2016). Imagining otherwise: The ephemeral spaces of envisioning new meanings. Mobilizing metaphor: Art, culture and disability activism in Canada, 54-75.
Rice, C., & Mündel, I. (2018). Story‐making as methodology: Disrupting dominant stories through multimedia storytelling. Canadian Sociology Review, 55(2), 211-221. http://hdl.handle.net/10214/17486
Runswick-Cole, K., Smith, M., Ryan, S., & Douglas, P. (2024). Dis/Entangling disability, mental health, and the cultural politics of care. Scandinavian Journal of Disability Research, 26(1), 28-43.
Russell, G. (2020). Critiques of the neurodiversity movement. Autistic community and the neurodiversity movement, 287.
Springgay, S., Irwin, R. L., & Kind, S. (2008). A/r/tographers and living inquiry. Handbook of the arts in qualitative research: Perspectives, methodologies, examples, and issues, 83-91.
Straus, E., Douglas, P., & Rice, C. (Under Review). Affective intensities and autistic misfitting: On surviving violence at school. Critical Studies in Education.
Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities. Autonomous Press.
Further Reading
Allely, C. S., Wilson, P., Minnis, H., Thompson, L., Yaksic, E., & Gillberg, C. (2016). Violence is rare in autism: When it does occur, is it sometimes extreme? The Journal of Psychology, 151(1), 49-68. https://doi.org/10.1080/00223980.2016.1175998
Anderson, L. K. (2022). Autistic experiences of applied behavior analysis. Autism, 00(0), 1–14. https://doi.org/10.1177/13623613221118216
Autistica (n.d). Autism myths. https://www.autistica.org.uk/what-is-autism/autism-myths-and-causes
Autistic Self Advocacy Network [ASAN]. (2024). Welcome to the autistic community. www.autismacceptance.com/read-the-book/.
Autistic Self Advocacy Network [ASAN]. (2022). For whose benefit? Evidence, ethics, and effectiveness of autism interventions. https://autisticadvocacy.org/wp-content/uploads/2021/12/ACES-Ethics-of-Intervention.pdf
Armstrong, T. (2012). Neurodiversity in the classroom: Strength-based strategies to help students with special needs succeed in school and life. ASCD. Brown, L., Ashkenazy, E.; Onaiwu, M. (Eds.). All the weight of our dreams: On living racialized autism. Autism Women’s Network.
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise, is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, 438.
Goodley, D., Lawthom, R., and Runswick Cole, K. (2014). Posthuman disability studies. Subjectivity, 7, 342-361.
Government of Canada. (2007). Pay now or pay later: Autism families in crisis. The final report on the Enquiry on the funding for the treatment of autism. Ottawa – Ontario: Senate. https://publications.gc.ca/collections/collection_2007/sen/YC17-391-1-01E.pdf
Government of Canada; Indigenous Services Canada. (2023, December 29). Submit a request under Jordan’s Principle. https://www.sac-isc.gc.ca/eng/1568396296543/1582657596387#repres
Hodge, N., Douglas, P., Kruth, M., Connolly, S., Martin, N., Gowler, K. & Smith, C. (2022). Contemplating teacher talk through a critical autism studies lens. In D. Milton & S. Ryan (Eds.). The Routledge International Handbook of Critical Autism Studies. Routledge.
Hodge, N. & Douglas, P. (2023). Developing the right(s) approach for autism. In A. Beckett and A. Callus (Eds.). Routledge handbook on children’s rights & disability. Routledge.
Immunize.org. (2024). Autism: Resources & information. https://www.immunize.org/clinical/vaccine-confidence/topic/autism/
Jaswal, V. K., & Akhtar, N. (2019). Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism. Behavioral and Brain Sciences, 42, e82.
Lindblom, A. (2014). Under-detection of autism among First Nations children in British Columbia, Canada. Disability & Society, 29(8), 1248–1259. https://doi.org/10.1080/09687599.2014.923750
McGill, O., & Robinson, A. (2020). “Recalling hidden harms”: Autistic experiences of childhood applied behavioural analysis (ABA). Advances in Autism. https://doi.org/10.1108/AIA-04-2020-0025
Memmott, A. (2023, January 22). Ann’s autism blog: Ethics and autism. Rights and responsibilities within Applied Behaviour Analysis. Ann’s Autism Blog. http://annsautism.blogspot.com/2023/01/ethics-and-autism-rights-and.html
Murray, S. (2008). Representing autism: Culture, narrative, fascination (Vol. 1). Liverpool University Press.
Nevada Department of Health and Human Services. (n.d). Autism myths and misconceptions. https://adsd.nv.gov/uploadedFiles/adsdnvgov/content/Programs/Autism/ATAP/Autism%20Myths%20and%20Misconceptions.pdf
Ontario Human Rights Commission. The opportunity to succeed: Achieving barrier-free education for students with disabilities. https://www.ohrc.on.ca/sites/default/files/attachments/The_opportunity_to_succeed%3A_Achieving_barrier-free_education_for_students_with_disabilities.pdf
Partnership for Extraordinary Minds. (n.d) Non-speaking autistic students’ resource. https://xminds.org/Nonspeaking-Autistics
Pyne, J. (2020). “Building a Person”: Legal and clinical personhood for autistic and trans children in Ontario. Canadian Journal of Law and Society/La Revue Canadienne Droit et Société, 35(2), 341-365.
Rice, C., & Mündel, I. (2019). Multimedia storytelling methodology: Notes on access and inclusion in neoliberal times. Canadian Journal of Disability Studies, 8(1), 118–148. https://doi.org/10.15353/cjds.v8i1.473
Rice, C., LaMarre, A., Changfoot, N. & Douglas, P. (2020). Making spaces: Multimedia storytelling as reflexive, creative praxis. Qualitative Research in Psychology, 17(2), 222-239. DOI: 10.1080/14780887.2018.1442694
Rice, C., Riley, S., LaMarre, A., & Bailey, K. A. (2021). What a body can do: Rethinking body functionality through a feminist materialist disability lens. Body image, 38, 95-105.
Rice, C., Jones, C. T., Mündel, I., Douglas, P., Fowlie, H., et al. (2022). Stretching our stories (SOS): Digital worldmaking in troubled times. Public, 33(66), 154-177.
Runswick-Cole, K., & Goodley, D. (2018). The ‘disability commons’: Re-thinking mothering through disability. The Palgrave handbook of disabled children’s childhood studies, 231-246.
Runswick-Cole, K., Douglas, P., Fogg, P., Alexander, S., et al. (2024). When father Christmas is the gaslighter. Journal of Literary and Cultural Disability Studies, 18 (1).
Sequenzia, A., and Grace, E. (2017). Typed words, Loud voices. Autonomous Press.
Silverman, C. (2008). Fieldwork on another planet: Social science perspectives on the autism spectrum. BioSocieties, 3(3), 325-341.
Tupou, J., Curtis, S., Taare-Smith, D., Glasgow, A., & Waddington, H. (2021). Māori and autism: A scoping review. Autism, 25(7), 1844-1858.
United Nations. (2006). Convention on the rights of persons with disabilities. https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities
Websites and Online Resources
Thinking Person’s Guide to Autism
AUteach Neurodiversity Education Resource
Parenting Autistic Children with Love and Acceptance
Fidgets and Fries (Instagram account @fidgets.and.fries)
10 Tips to Support Autistic Children by Briannon Lee
Videos and Documentaries
Re•Storying Autism website: “Gallery” section
S/Pace by Adam Wolfond and Estee Klar
Agony Autie (multiple videos on meltdowns and shutdowns)
A close-up cutout of a black and white clown-like person. Their head is disembodied, and the only thing that can be seen other than their face is part of the neck of their clothes. They are smiling, inside their mouth are the words “CUT OUT” capitalized. These words are also inside of their eyes, which have no pupils. The head is attached to the rest of a cutout, which displays part of a building, although it is cut-off. Behind the cutout is a black curtain.
