About three years ago, Seyeon Lee was invited by CenterState CEO, an economic development organization in Syracuse, to help design a women’s wellness center on the North Side of the city. Lee, an associate professor of environmental and interior design…
Falk Professor Advocates for Including Autistic Adults in Research That Shapes Their World
Katherine McDonald, Ph.D., was in a brainstorming session with other editors from the innovative journal Autism in Adulthood and jokingly says that “I made the mistake of having a good idea for a special issue.”
The result: McDonald, a professor of public health in the Falk College of Sport and Human Dynamics and chair of the University’s Institutional Review Board, was selected as the guest editor for a March special issue called “State of the Science.”
In honor of Autism Acceptance Month in April, SU News reached out to McDonald, a Fellow of the American Association on Intellectual and Developmental Disabilities, to learn more about the special issue, her current research on adults with disability and why this research is close to her heart.
Q: April is Autism Acceptance Month, and this is the first year it’s not being called Autism Awareness Month. Why the change?
A: Autism acceptance embraces the idea that disability is a natural form of human variation, that people with disability should have a voice in matters that affect them, and that we need to see strengths—not just deficit—and ways that environments are the problem, not the people therein.
Autism Acceptance celebrates neurodiversity and pushes us to dismantle the interpersonal, institutional and structural dynamics that discriminate based on disability. If you want to learn more about the Autistic community, considering reading Welcome to the Autistic Community. If you want to learn more about neurodiversity, our special issue has a terrific interview with Nick Walker.
Q: How did you come up with the idea of the “State of the Science” special issue and what was your role as guest editor?
A: Autism in Adulthood is a new journal created to be a home to an emerging area of scholarship focused on autistic adults. Even though we live most of our lives as adults, the preponderance of research attention is directed at childhood.
The journal recently released a well-received, two-part special issue on another critical topic in autism adulthood research. The editor-in-chief initiated a discussion with the deputy editors about topics for future special issues of the journal. I proposed the idea of an issue focused on the state of the science and agreed to be a guest editor for the issue. I proposed the topic because I knew it was important to take stock of our current knowledge base, and I also thought it might help generate new knowledge at a time when much of our research was hindered or brought to a standstill during the COVID-19 pandemic. Fortunately, I was joined by a talented co-guest editor, Anne Kirby, from the University of Utah.
Dr. Kirby and I shaped the focus of the special issue, solicited manuscripts, managed submissions through the peer review process working with authors to strengthen the quality of their contributions to the field, hosted an expert discussion on knowledge translation and wrote an editorial.
Given that we completed the entire special issue during the COVID-19 pandemic and at a time of grave racial injustices, we are especially grateful to the authors, peer reviewers and other deputy editors for their contributions.
Q: What is the “State of the Science” in adult autism?
A: Science—the structured and systematic process we use to study the world—consists of a cumulative record of distinct empirical studies. Each study tells us something, but it is via the synthesis of knowledge across studies that we achieve greater certainty in our knowledge.
It is important to regularly take stock of the state of the science, and this is what we focused on for the special issue. Spotlighting the state of the science allows us to ask important questions such as: What gaps are there in the evidence base? What is the quality and nature of our knowledge? Answering these questions allows us to guide evidence-based recommendations for policies and practice and future research investments.
Since we are interested in using new knowledge to improve lives, we also hosted an expert discussion on knowledge translation, or the conscious and proactive process on how research can and should be integrated into policies and practices.
Q: As you mentioned, the preponderance of research attention is directed at childhood. What are the most pressing issues currently affecting older adults with autism?
A: A lifespan approach is critical to promoting well-being across one’s life. There are so many pressing questions! At the fore are those that ask how we can structure environments to fully support autistic people in every aspect of life so they flourish and lead the lives they desire.
Articles in the special issue tackle many of these pressing issues: embracing neurodiversity, eradicating ableist language, structuring institutions of higher education to support autistic students’ success, the potential impact of internet-mediated communication, autistic masking, pregnancy and parenthood, among others.
Q: Your current research focuses on adults with intellectual disability and the ethical, legal and social issues that prevent them from being included in research. Why is their inclusion in research important and how are you advocating for that?
A: At a fundamental level, I am bothered by all the ways we marginalize and leave people out. While doing this always has detrimental impacts, some are more dangerous than others. This is particularly true when we exclude people from participating in research.
By systematically excluding women and children under the guise of protecting them and failing to effectively address the distrust and biases that lead to an under-representation of racial and ethnic minorities in research, we know little about how to positively impact their health. That means we often have underrepresentation of racial and ethnic minorities in cancer research because their cancers tend to be identified later, beyond early stages.
As you can tell, I position science as an important partner in social justice. Many people are working to address the inclusion of women, children, and racial and ethnic minorities in research. We need to do the same thing for people with disability. When we don’t include them, we fail to advance insights into how to promote health equity. Instead, they continue to experience increased risk for preventable mortality, co-occurring conditions, and early onset aging, and experience decreased attention to health needs, access to health promotion and preventive healthcare, and quality of life.
As importantly, when we fail to include them, we also send messages of “you don’t belong” or “you aren’t capable.” These are messages no one should ever hear. In developmental disability research, we also see a tendency to ask a family member or care provider to speak on behalf of the person with disability. Not only is that insulting, but it can lead to information of questionable quality.
I try to work on this problem and seek to increase inclusion in a variety of ways. For example, I work with community members—people with disability and those who care about them and provide them support—to understand the value of volunteering to be in research and how to evaluate the risks and benefits of a research study. I consult with other researchers to help them devise research procedures that accommodate and demonstrate respect to adults with developmental disability and encourage them to avoid categorical exclusion based on disability.
Q: What led you to focus your research on people with disability?
A: I grew up in a family committed to social justice and service. As a young adult I lived in an intentional community with individuals with and without developmental disability. Through these friendships I saw firsthand how much ill came out of their persistent marginalization and how much good emerged from their inclusion. I wanted to be part of creating a world that is inclusive of everybody. My research focuses on this theme of creating inclusive communities. We all belong. We all have value. Some of us just need more support to be included.
Q: Is there anything more you’d like to share with us about people with disability and what can we all do to be more inclusive?
A: People with disability are often characterized as invisible citizens. It is stunning to say that they make up about one-fourth of our population yet continue to face injustices that threaten their lives and well-being every day.
When we focus on equity, we need to take an intersectional approach that incudes people with disability as an essential axis of diversity and means of oppression. This lifelong process of being an ally to people with disability involves small and transformative acts, some relatively easy, some much harder and more uncomfortable.
The actions might include learning about disability justice and the experiences of people with disability, being in authentic relationships and amplifying the voices of people with disability to transfer privilege and power, critically assessing one’s actions and taking action to embody disability justice, and encouraging others to becomes allies. As people are learning more about ableism I often suggest they swap out “disability” with “women” or “LGBTQ+”—the instantaneous revealing of the insidious pervasiveness of disability discrimination can be quite jarring.
The rallying slogan of the disability rights movement–“nothing about us, without us”–provides an easy heuristic for creating inclusive communities: People with disability should be everywhere shaping the conversations and decisions that impact our world.
In recognition of Autism Acceptance Month, “Autism in Adulthood” has published a virtual collection of articles that can help further the discussion on the importance of autism acceptance. Read the articles with free access through April 30.