Partners in Research Series: Establishing a National Autistic-led Research Agenda

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About the Autism Research for Us Symposium

Background

In the past, autism research has mostly been conducted by non-autistic people, and researchers have described autism as something bad that should be fixed. Describing autism in this way has negative effects on how society views and treats autistic people and may even negatively affect how autistic people view themselves. A collective of autistic self-advocates, autistic researchers, and like-minded allies wanted to fix this.

In September 2023, the Autistic Self-Advocacy Network (ASAN) and the Policy and Analytics Center (PAC), based at the A.J. Drexel Autism Institute, located within the Dornsife School of Public Health at Drexel University, held a symposium about autism research. A symposium is a meeting that brings people together to talk about an idea or problem.

The symposium was held over four half-day sessions with more than 150 participants, including speakers. We invited autistic self-advocates, autistic researchers, non-autistic researchers and other key collaborators to the symposium. The planning team prioritized autistic attendees as experts. Autistic people expressed what they wanted and needed from future research. Together, autistic self-advocates and researchers, both autistic and allies, set out to create a plan for research. Autistic people led the plan in collaboration with PAC team members. The symposium included discussion of topics that needed additional research and thoughts on how to go about doing this research.

Participatory research was a common topic of discussion at the symposium. Participatory research, in this specific instance, is when the autistic community and researchers work together to design, carry out, and share research. The symposium also centered research led by autistic people and autistic participants who belonged to more than one community that experiences marginalization, including:

    • Autistic people of color (such as Black, Hispanic/Latine, Asian, Indigenous)
    • Autistic people who do not communicate through speech, either all of the time or some of the time (also called “non-speaking” or “partially speaking” autistic people)
    • Autistic people who are LGBTQ+. LGBTQ+ stands for lesbian, gay, bisexual, transgender, queer, and other marginalized sexual orientations and gender identities.
    • Autistic people with intellectual disabilities
    • Autistic people with mental health disabilities
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General Summary

This section summarizes cross-cutting topics. These are topics that apply to all autism research no matter what the topic is.

Below are cross-cutting topics that we heard across session. These topics were repeatedly nominated by participants for further research exploration, reflecting key areas of interest and importance.

Issues with Current Research and Research Methods

Research that is not driven by community priorities

  • Genetic research and research searching for a cure for autism (or causation) continues to be heavily funded despite community concerns (e.g., about eugenic implications).
  • Research funding is disproportionately higher for genetics research than for topics like lifespan issues, quality of life, services and supports.
  • Over time, autism research has been influenced by the priorities of funders, non-autistic researchers, and parent advocates, but usually not by autistic people themselves.

Stigmatizing/stereotyping in research

  • Autism researchers have a large impact on how autistic people are viewed in society.
  • Research that sees autism as inherently negative leads to a focus on screening and prevention, rather than changing society to support autistic people.
  • Research on autistic people’s communication and perception often focuses on supposed deficits or weaknesses, instead of trying to understand how these processes work differently for autistic and non-autistic people.
  • Some research furthers common stereotypes about autistic people (e.g., They must have useful “superpowers” to be accepted; they are all neurologically the same; they do not have a sexuality).
  • The wide range of presentations and support needs among autistic people is sometimes used to divide the autistic community.

Issues with research practices

  • Research often fails to respect the consent and perspectives of autistic children.
  • Consent forms and other participant-facing materials are usually not written in plain language. Plain language is a specific style and format of writing that makes information clear and easy to understand.
  • Research institutions are not addressing the past and present harmful practices that cause many autistic people to distrust researchers.
  • Progress in community-based participatory research (CBPR) has been limited to areas of research where it is “easiest” to recruit participants and conduct the research.

Exclusion of multiply marginalized autistic people in research

  • Autism research has typically focused on white, upper middle class, cisgender boys. We need more research regarding autistic people with intersecting marginalized identities (e.g., autistic women of varying economic backgrounds). Autistic people who are marginalized based on their race, ethnicity, age, gender, sexuality, support needs, and other identities are left out.
  • Inaccessibility, prejudice, and even study protocols (e.g., disqualifying autistic people with co-occurring disabilities) can create barriers to inclusion.
  • Researchers often ignore the multiple intersecting identities and cultural contexts of autistic people, both in their recruitment and data collection.
  • Multiply marginalized autistic people are often excluded from roles that make decisions about research funding, ethics, and study design. This reinforces problems, like the ones listed here, because there is little motivation for people who are not impacted by these problems to change research practices.

Exclusion of autistic researchers

  • Many autistic researchers and autistic academics are pushed out of their fields by prejudice, discrimination, and a lack of accommodations.
  • Many autistic researchers are unable to be openly autistic due to stigma.
  • Autistic researchers are sometimes excluded or dismissed from autism research because they are seen as being biased.
  • Autistic people are often limited to roles as advisory board members, not as funding decision-makers, institutional review board members, full members of study teams, and principal investigators.

Directions for Research Methods

Autistic-led and participatory research approaches

  • Research on autism needs to include, center, and be led by autistic people with a variety of skills, support needs, identities, experiences, and ages.
  • Autistic people should be involved in research at all stages and in all roles (e.g, members of research teams, advisory committees, Institutional Review Boards).
  • Autistic community priorities should drive decisions about which topics to study and which research to fund.
  • All fields of autism research should use community based participatory research, participatory action research, and/or other partnerships with autistic communities.
    • Researchers should study ways to implement community participation in research and study the impacts of community participation on research outcomes.

Centering multiply marginalized autistic people in research

  • Multiply marginalized autistic people need to be included as collaborators from the beginning of the research process, centered in leadership, and supported in research spaces.
    • In autism research, "centering" autistic people means placing a focus or emphasis on them, making the expressed needs of the community a priority. It involves framing the research, questions, or analysis around their experiences and viewing things through an autistic lens without projecting neurotypical expectations onto the work.
  • Researchers need to center their research processes around the accessibility needs of multiply marginalized people in the autistic communities they study.
  • Research should promote cultural responsiveness through training, protocols, and community representation on the research team.

Intersectionality and Diversity of Participants/Populations

Research the experiences of…

  • Autistic adults in general and autistic older adults specifically.
  • Autistic people who are not from “WEIRD” (Western, Educated, Industrialized, Rich, and Democratic) backgrounds.
  • Other multiply-marginalized autistic people as described above.

Accessibility for research participants

  • Language
    • Use plain language in participant-facing materials.
    • Invest in linguistically and culturally accurate translations of study materials into other languages.
    • Be mindful of pace and clarity when speaking.
  • Financial. Ensure equitable compensation for research participants and community collaborators.
  • Location. Offer multiple virtual and in-person options, and transportation assistance.
  • Time. Offer flexible scheduling, non-traditional hours, and caregiving support.
  • Process:
    • Offer multiple modes of participation
    • Provide flexible accommodations for all disabilities by asking ALL participants about their access needs, not just those with apparent disabilities
    • Develop ways of including autistic children’s self-reports

Accessibility in dissemination

  • Prioritize open-access publishing.
  • Use accessible language in published material (e.g., plain language and Easy Read versions, lay summaries). Note that using accessible language does not mean leaving out details or information you would include in a formal language document; it means communicating those same details in an accessible way.
  • Share research beyond academic journals and databases (e.g., through social media, public presentations and discussions).
  • Use multiple communication formats (e.g., visuals/pictures, videos, audio).
  • Communicate key takeaways and action items directly to self-advocates, clinicians, and service providers.

Transparency and ethics

  • Be transparent with participants about how data will be collected and used.
  • Avoid misleading participants (e.g., when trying to control response bias).
  • Disclose conflicts of interests when there are financial ties to treatment research.
  • Disclose all potential harms caused by treatment research.
  • Consider the involvement of minors in research.
  • Share information about risks that come with having one’s name attached to research projects as a collaborator (e.g., harmful responses to research).

Transforming the Field

Support autistic researchers inside and outside of academia.

  • Increase inclusion in higher education through accommodations, peer support, and mentorship programs.
  • Recognize the skills and expertise of autistic researchers and advocates outside of academia.
  • Use existing tools that connect researchers to autistic collaborators with relevant lived experiences and expertise (e.g. INSAR Community Collaborator Request).
  • Ensure training, mentorship, and professional development opportunities for non-academic autistic researchers. Models exist but are not widely used.
  • Ensure supportive working conditions for autistic researchers including accommodations, respect for access needs, equitable pay, remote job options, and job security.

Codify inclusive research practices.

  • Create guidelines for funders, ethics committees, and researchers on including people with intellectual and developmental disabilities in the full research process.
    • Practice neurodiversity-affirming values, not just language.
  • Institutional Review Boards should accept accessible alternatives to currently inaccessible training programs.
  • Institutional Review Board procedures should protect research participants without creating undue barriers to research with multiply-marginalized autistic people. For example, the process of giving consent to participate in research should be accessible; for example, expressed in plain language.

Self-advocacy and allyship

  • Activists and allies need to work with the diversity of the autistic community. There is no one perfect approach to language, research, and activism.
  • It is important to consider the experiences and needs of those in the community who cannot speak for themselves (e.g. young children).
  • Autistic people can educate and involve the people around them in advocacy, but should not be tokenized as the only people doing so. Collaborators should not assume that every autistic person has the capacity to educate them about autism in addition to performing other responsibilities in a research setting.
  • Non-autistic allies should support autistic people who speak up about harmful research practices, rather than becoming defensive.

The Need for Community-Based Participatory Research

Research approach: CBPR

  • Community-based participatory research design, like the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), should guide research with autistic people.
    • The ways to meaningfully include autistic people in research are applicable across research topics, even when the research has nothing to do with autism.
  • When researchers survey diverse autistic communities, research topics are re-centered around autistic people's priorities, needs, and autonomy as the primary stakeholders. Overall, autistic people say there is a need to shift away from a focus on “curing” or preventing autism and a need to shift toward community priorities.
  • Autistic people, especially those who are marginalized in multiple ways, should shape research from the very beginning (i.e., deciding what to research).
    • People with lived experience relevant to the research question(s) at hand should be involved in planning research questions, methods, and outcome measures.
    • Need to include autistic people at every step of research, from formulating topics to designing and carrying out studies to accessing/using research products.
    • Invitations for participatory research should be advertised within the community.
  • Autistic people should have the training, education, communication support, and mentorship needed to fully participate in research.
  • Participatory research should be accessible for all autistic people by including accommodations and multiple ways to participate.
    • Increase accessibility of research participation for autistic people with a variety of support needs.
  • Current funding structures, which at times prioritize specific scientific research, make it difficult to conduct community-based participatory research.
  • Need to include and advocate for autistic researchers within autism research.
  • Funding incentives could help increase CBPR.

The Need for Better Dissemination of Research Findings

  • Communicate with all stakeholders, including self-advocacy organizations, service providers, service recipients, caregivers, and policymakers.
  • Create plain language and easy-read translations of research.
  • Work with publishers that offer open-access publishing or encourage sharing.
  • Use non-academic communication formats to reach community members, including social media, videos, online community forums.
  • Communicate with service providers through targeted materials (e.g., accessible tip sheets for implementation).

Dissemination with community

  • Use accessible language in the findings of original publications.
  • Plain language versions of findings should be longer (due to the language and formatting standards for plain language) and include just as much detail as the original publications.
  • Findings and relevant implications should be accessible through “short and loud” public communication formats (e.g., bus posters) and shareable online materials.
  • Stakeholders (including autistic community members, research networks, advisory panels) should not simply be informed of the research findings; there should be a two-way dialogue to see what findings make sense or do not make sense to them.

Use within community

  • Research findings should be translated into educational materials, and researchers should give people the resources to educate others in their communities.
  • Disseminate more plain-language, accessible materials in general.

Dissemination to community

  • Disseminate research findings in a more accessible way.
    • More plain-language products
    • Disseminate products such as photos or visual
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