By Kyle Chvasta
Edited by Anne Roux and Kaitlin Koffer Miller
The work of autism researchers, service providers, advocates, and policymakers is nothing without feedback and input from the people and communities we intend to serve. If we do not intentionally center the voices of autistic people, then we risk making assumptions, decisions, and choices through a limited lens, while people’s experiences, needs, and opinions are left unheard. The Policy Impact Project has discussed the importance of the saying “Nothing About Us Without Us”. This mantra, which is at the heart of much of the disability rights movement, can positively impact research and policy. We saw this in action when the Interagency Autism Coordinating Committee (IACC) opened a public comment period about research, services and policies related to autism ahead of their monthly committee meeting in April.
The IACC is a federal advisory committee that coordinates autism efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. In essence, they are a communication channel to the highest decision makers who could shape autism research agendas and influence policy, such as the Secretary of Health and Human Services, currently Xavier Becerra, as well as informing the autism research portfolio at the National Institute of Mental Health..
Many autistic people heeded calls to action and took to IACC’s comment portal to speak their truths. The IACC received 119 pages of feedback, stories, frustrations, recommendations, successes, and setbacks. All within the framework of changing the narrative and the lived experiences for autistic people. At least 80 comments were from self-identified #actuallyautistic people. We extracted comments and created the word cloud* (below). We strongly emphasized understanding and listening to the voices of autistic people, and including them, throughout the process of conducting research and delivering services.
One commonly expressed need was that of service access and availability for autistic adults:
- “...[P]lease look into federal funding for assistance with executive function issues relating to home care tasks. Please make it easier for autistic people living independently to access housekeeping services through state governments.”
- “As an autistic adult and sibling of a late diagnosed autistic adult, my comments remain about the expansion of disability support services that include job coaching for adults. Too many times these services including testing centers for Autism are focused on children and preventing autism from continuing into adulthood.”
Another commonly described theme is the importance of including autistic individuals in all aspects of decision-making:
- “I would like IACC to use its unique role to promote the inclusion of autistic adults ourselves in all forms of autism research. Autistic adults can provide input on not just our co-occurring disabilities and lifespan issues, but on communication access, the design of studies on the neurology of autism, studies on which services and supports work best for different groups, and indeed on any aspect of autism research.”
Developing research priorities guided by autistic people was also repeatedly highlighted:
- “All public policy, research funding and other actions that will affect the lives of autistic people should be made by consulting autistic people first”
- “I would like research to collaborate with autistic people, to consult us as key stakeholders in any and all studies on autism”
Suggested research topics included, but were not limited to: sleep, gastrointestinal issues, career and job outcomes, autism presentation in female-identified individuals, and issues impacting the LGBTQIA+ and autistic BIPOC community.
- “I would recommend IACC prioritize research on challenges of needs of autistic individuals that are multiply marginalized, such as in the LGBTQ community, autistics of color, and autistics with multiple disabilities. I also recommend including autistic researchers in the collaborative process and not only as research subjects.”
Other key themes expressed by autistic adults included ending Applied Behavior Analysis (ABA) therapies, and looking into therapeutics that autistic people prefer, increasing accommodations and supports for autistic individuals such as employment, housing, and social supports, as well as better practices for funding allocations.
Overall, the document is a treasure trove of voices and thoughts. This highlights the importance of soliciting, and hopefully putting into practice, feedback from the people most impacted by research, services, and policies. In this case, autistic people.
As an autistic person myself, who cares deeply about many of these expressed topics, I highly suggest that you read through the comments. It was deeply edifying and affirming. Here’s hoping the HHS secretary reads them too!
* A special thank you to Katherine Ardeleanu, MS, LGPC, doctoral student within the Health Services Research & Policy program at Drexel University’s Dornsife School of Public Health. Katherine created the above word cloud and provided invaluable information and insight that contributed to the creation of this blog post.