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Key points
- The historical context of autism advocacy helps us understand the emerging role of autistic-led organizations.
- We can move beyond awareness to action by evaluating organizational practices for inclusivity.
- We can shift from speaking for autistic individuals to amplifying their voices and empowering leadership.
by Patricia Wright, Ph.D., MPH
I started my career in autism services and support in 1983. I was a respite provider to a family, spending time with a super-cool 8-year-old named Shari. I kept this job through college where I was studying to be a special education teacher. I then started supporting students in educational settings, and my career has now included working in education, health care, tech, and more. In all of these settings, I understood my role in supporting autistic individuals to have access to a full life rich with relationships, opportunities, and happiness.
As my lived experience grew with maturity, I started to identify as an ally to the autism community. I began to realize how people with autism and disabilities were marginalized and that I needed to act as an ally, as described by Douthiert-Cohen et al. (2013), one that interrupts oppression and injustice. As a special education teacher, this meant advocating with the school administration to ensure that my students had access to extracurricular activities, including school dances—activities they had been excluded from. Later in my career, this allyship advanced to taking an active role in advocating for policy change by visiting my legislators and writing letters to my congressional representatives to advocate for effective autism programming.
For most of my career, there were no autistic voices leading the advocacy effort. The only autistic person that was known to the public was Temple Grandin. She was an incredible voice, and we all listened to her words and read her books, but she was just one human. Parents of autistic children and professionals like me led advocacy efforts. Times have changed, and autistic advocates and autistic-led organizations such as the Autistic Self Advocacy Network and the Autistic Women and Nonbinary Network have emerged. Given the current landscape, the role of allistic people in autism advocacy has been questioned (Benjamin et al., 2020; McCoy et al., 2020); perhaps now, allyship must be earned by the autistic community.
Reflecting on other marginalized communities and the role of allyship has been helpful. Movements like the Abolitionist Movement in the 19th century found white abolitionists acting as allies to enslaved African Americans. The Women's Suffrage Movement welcomed male allies to support the rights of women to vote. The Civil Rights Movement included white activists to fight against segregation, discrimination, and racial injustice. The LGBT community appreciated the support of straight allies who advocated issues such as marriage equality.
Warren and Warren (2023) conducted a qualitative study of 25 peer-nominated exemplary allies serving in leadership positions and the virtues that supported their allyship. These allies went through four stages of development:
- Stage 1: Energizing psychological investment (compassion, fairness)
- Stage 2: Thinking through allyship-relevant complexities (intellectual humility, perspective-taking, wisdom)
- Stage 3: Initiating action (prudence, moral courage, honesty)
- Stage 4: Committing to allyship (perseverance, patience)
Sometimes it is hard to know where to get started. Using these four stages as a guide and starting at Stage 1 might encourage us to leverage our understanding of fairness and truly evaluate our organizations for inclusivity. Assessing our business practices ensures we are truly welcoming to diverse community members. Moving into Stage 2 requires humility to engage in critical self-reflection to determine how past behavior may have contributed to marginalization. That required me to evaluate my interview practices, which definitely favored individuals with high verbal skills and extraversion. Stage 3 has required me to evaluate my true role and the value of my voice at the advocacy table. Now, my job is often to step back and ensure the voices of autistic individuals are heard to ensure they have the power position. Reviewing Stage 4, I maintain my initial commitment to my role as an ally, interrupting oppression and injustice.
The current outcomes for autistic individuals in our society continue to be unacceptable. I want to be part of the community that works to improve the well-being of the autistic community. In her work promoting allyship, author Naomi Evans stated, "Showing up for others is one of the most powerful things you can do." Using the four stages of development will help me and other allistic allies to show up for the autistic community and hopefully be invited in as allies.
References
Benjamin, E., Ziss, B. E., & George, B. R. (2020). Representation Is Never Perfect, But Are Parents Even Representatives? American Journal of Bioethics, 20(4), 51–53.
Douthirt-Cohen, B., Tokunaga, T., McGuire, T. D., & Zewdie, H. (2023). Pitfalls and Possibilities of Social Justice Ally Development Models: Lessons From Borderland Theories for Building Solidarity Across Difference. Educational Studies, 59(1), 14–29.
McCoy, M. S., Liu, E. Y., Lutz, A. S. F., & Sisti, D. (2020). Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation. American Journal of Bioethics, 20(4), 13–24.
Warren, M. A., & Warren, M. T. (2023). The EThIC Model of Virtue-Based Allyship Development: A New Approach to Equity and Inclusion in Organizations. Journal of Business Ethics, 182(3), 783–803.
