Mission Statement
ASAN and the Policy and Analytics Center (PAC), based at A.J. Drexel Autism Institute at Drexel University, will hold a symposium about autism research. Autistic people will tell researchers what we want and need from future research. Together we will create a plan for research and share it with everyone. Autistic people will lead the plan. We will talk about how we do research. We will focus on participatory research. Participatory research is when the autistic community and researchers work together to design, do, and share research. We will also look at research led by autistic people. We especially want to hear from multiply marginalized autistic people, including:
- Autistic people of color
- Non-speaking autistic people (both full time and part time)
- 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.
Words To Know
- CBPR: A way of doing research where researchers and community members serve as equal partners throughout the entire research process. CBPR stands for Community Based Participatory Research. CBPR often has goals like educating people, improving how research is done, or changing society. CBPR looks at the differences in how much power researchers have versus how much power community members have. CBPR is especially helpful when working with marginalized groups (like autistic people). CBPR can help build better relationships between researchers and marginalized groups. CBPR can help make sure the way knowledge is shared between researchers and marginalized groups is more fair.
- Focus group: When a group of people come together to talk about a specific topic with a moderator. A moderator is a person who leads the focus group.
- Symposium: A meeting that brings people together in order to talk about an idea or problem.
- Research: The process of trying to answer a question or find the solution to a problem.
- Participatory research: A way of doing research where the researcher or researchers and community members that are most impacted by the research, work together throughout the research process.
- Research studies: Research projects that people do to learn new information or to answer a question. Research studies are often designed to make sure the information they get is correct.
- Most impacted: The group or groups that something affects the most. When we talk about research, we use “most impacted” to mean the group or groups that the research affects the most. For example, autistic people are the most impacted group in autism research.
- Research agenda: An agenda is a plan that focuses on issues in a specific area. A research agenda focuses on issues within specific kinds of research. This research plan will focus on autism research.
- Reparative research: Research that takes into account harms that have been done by research in the past and seeks to do more equitable and ethical research.
- Ethical consideration: Things to think about within research to make sure the people who participate in the research are not harmed by the research.
- Multiply marginalized: Marginalization is when people are unfairly left out of society or groups because of their identity, such as their:
- race
- gender identity
- sexual orientation
- age
- disability
- immigration status.
When someone is multiply marginalized, they are unfairly left out of society or groups because of more than one part of their identity.
For example: Jacob is a Black, gay man with an intellectual disability. Different parts of society treat Jacob badly because of his identities. Because Jacob is treated badly based on more than one identity, he is multiply marginalized.
Process
Partnering and Planning
ASAN and PAC at Drexel University partnered to plan the symposium. We wanted to form a research agenda that represents the priorities of the autistic community, rather than the priorities of non-autistic researchers or parents.
ASAN is a nonprofit by and for the autistic community. We believe that all autistic people have the right to equal access, rights, and opportunities. We work to make this belief a reality. We work to give power to autistic people across the world to take control of our own lives and the future of our common community. We seek to organize the autistic community to ensure our voices are heard when people talk about autism and autistic people.
The Policy and Analytics Center (PAC) is based at A.J. Autism Institute at Drexel University. We are a group of researchers from many different backgrounds and types of research. We do research that helps people develop good social and health policy in different places across the US.
Staff from both places had meetings every other week. During these meetings, the staff worked together to outline the mission, goals, and the vision for the symposium. ASAN and PAC both focused on different tasks in helping to organize the symposium.
Focus Groups
Before the symposium, we will hold six focus groups. We want to center autistic people that have been most often left out of research in the past.
Focus groups are made up of:
- Autistic people with intellectual disabilities
- Nonspeaking autistics (both full-time and part-time)
- Autistic people with high support needs
- Autistic people of color
- Black autistic people specifically
- Autistic people around the world
Most focus groups will be between four to five hours long. Some focus groups will happen over time.
We also want to give participants the opportunity to respond in different ways. In all focus groups, people can answer in either spoken or written words. Some of our participants may not use words to communicate or may prefer to use other ways to communicate. This may include video, art, and photos. For example, someone who does not communicate using words may take pictures of the things that are important to them. This is sometimes called photo-narrative inquiry or photo-narrative processes.
Focus groups will give us information to help us plan for the symposium. We will listen to the priorities of the autistic community and use them to decide what we talk about at the symposium.
The Symposium
We will invite autistic self-advocates, autistic researchers, non-autistic researchers and other key stakeholders to the symposium. The symposium is invite-only, but we will have ways for the autistic community to participate, such as a Twitter Chat.
The symposium will be held in the fall of 2023. It will be synchronous and virtual. This means it will happen in your own space, but with everyone logged onto the computer at the same time. The symposium will happen over a few days. At the symposium, we’ll have presentations and discussions about current and future research.
There will be four tracks at the symposium. A track is a group of similar topics. In each track, we will talk about different topics. The four tracks will be:
- Biology and Neurology:
- Etiology (where autism comes from)
- Biology
- Genetics
- Neuroscience
- Psychology (not including mental health care)
- Health Care:
- Mental health
- Co-occuring conditions (other illnesses or disabilities that can happen alongside autism)
- Health care outcomes
- Health care supports
- Provider cultural competency (making sure providers have the skills to give good health care to autistic people of many different cultures)
- Services and supports:
- Augmentative/alternative communication (AAC) and communication strategies
- Home and community-based services (HCBS)
- Education
- Therapies & interventions besides mental health services for all ages
- Adulthood and aging:
- Transition to adulthood.
- Employment
- Parenting
- Adult diagnosis
- Trajectories over the lifespan
- Aging
At the symposium, we will discuss the future of research. We will talk about how research should be done. We will talk about how autistic people can lead and guide research. We will also talk about gaps in research and ethical research. We will talk about these things for each of the tracks.
After the Symposium
After the symposium, staff at ASAN and Drexel will work together to create a research agenda based on the perspectives of our focus group members and symposium attendees. We will publish this research agenda for everyone to see. We will publish a formal language, plain language and Easy Read version of this research agenda. We think it’s important that everyone can understand the research agenda.
We want this research agenda, and the process used to generate it, to be used to guide autism research. We think this research agenda should be used to create autism research policy. Policy is rules and laws and ways of paying for things that the government makes. We want the government to create policy that matches what autistic people want from autism research. We want the government to give more money to research that actively incorporates autistic voices, perspectives, and priorities. The results of our research, and the symposium, will help create these policies.
The government also gives money to a lot of autism research. In the US, the IACC gives advice about government funding for autism research. IACC stands for Interagency Autism Coordinating Committee. The IACC is a group of people who make suggestions about what kinds of autism research the government should fund. You can read more about the IACC in ASAN’s guide about the IACC. We want the IACC to use the research agenda we create. We want the IACC to use our research agenda to decide to fund autism research that autistic people support.
Autism research should match the priorities of the autistic community. Autistic people should get to decide what autism researchers study. When non-autistic people decide what autism researchers will study, the research often doesn’t help autistic people.
ASAN’s motto is Nothing About Us Without Us. Autism research should not be done without seeking input and guidance from the autistic community. Over the past decade, we have seen a great deal of progress towards ensuring that autistic people are listened to. However, we still have a ways to go.
Our goals
Through this process, we hope to learn more about the following questions concerning autism research:
- How can autism research reach the people who need or want to use it?
- How can autism research reach the people who need or want to learn from it?
- How do we set up research that will work for the future, as we learn more?
- What are the most urgent priorities for autism research right now?
- What are the gaps or weaknesses in current autism research?
- What strategies should be required for research that is respectful and centers those with lived experience?
- How can partnerships between researchers and the autistic community shape the future of autism research?
- What are ethical considerations to research that respects, values, and prioritizes lived experiences?
- What research questions do autistic people prioritize going forward?
We will also share what we learn with others. We will publish resources that explain more about what we learn. We want what we learn to help guide future research.
Resources and Partners
To learn more about work being done on self advocate centered autism research: