Facebook-f Twitter Tumblr Instagram Youtube Shopping-cart

Autism Research for Us: Creating an agenda led by the autistic community

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.
  • 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. 

  • 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. 

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.

Symposium Schedule

This schedule is not final. It may change before now and the event. We will make any changes here.

ALL ATTENDEE SESSIONS 

Monday, September 11, Session A (12-1:15 ET): Opening Session 

ASAN and Drexel’s Policy Impact Project will welcome attendees, speak about the goal of the project and go over the schedule, accessibility, and other logistical details. We will then have three mini-keynotes about important issues in autism research. This is an all-attendee event, all tracks meet together. 

Monday, September 11, Session B (1.45-3 ET): Autistics Speaking on Research Town Hall
This is a town hall, where autistic people speak and researchers listen. We will invite all autistic attendees to discuss topics such as: what issues should be researched, how research should be done, ethical concerns, and the importance of including autistic people meaningfully in leading research. There will be a time for question & answers and where non-autistic researchers can ask questions to autistic attendees. This is an all-attendee event, all tracks meet together.

Tuesday, September 12, Session A (12-1:15 ET): Meaningfully Inclusive Research Panel

We’ll have a panel about discussing meaningful inclusivity in research. It’s important that we think about inclusivity as intersectional and including many different facets of identity. Community-based participatory research needs to include autistic people of color, nonspeaking autistic people and autistic people with a wide variety of additional disabilities. This is an all-attendee event, all tracks meet together.

Thursday, September 14, Session B (1.45-3 ET) : How to Translate Academic Writing into Plain Language and Easy Read

Plain Language (PL) is a writing style which turns information into accessible and understandable formats for individuals with intellectual or developmental disabilities (IDD). Easy Read (ER) is a method of presenting written information in ways those who have difficulty reading will be able to process, and is accompanied by images. This session will teach participants how to translate academic writing into both formats. Session will include an interactive part where attendees will practice translating academic writing abstracts into PL/ER blurbs. This is an all-attendee event, all tracks meet together.

Friday, September 15, Session C (3.30-4.45 ET): Reflection and Discussion
This is a space for reflection on what was discussed during the week as well as time for individuals to speak with one another about the information presented in different tracks. Essentially a debriefing session where participants:

  • share what they’ve learned and what they’re excited to learn more about
  • identify key priorities of autism research
  • reflect on how to approach autism research moving forward

This is an all-attendee event, all tracks meet together.

TRACK: Biology and Neurology

Monday, September 11, Session C (3.30-4.45 ET): Introductions and Discussions of Current Research

Our first session in each track will discuss the current state of research, which includes ethical concerns, how research includes autistic participation, what areas are under researched and where we should go from here.

Tuesday, September 12, Session B (1.45-3 ET): Beyond Causation and Prevention: Making Biological Research Work for Autistic People

The bulk of biological and genetic research focuses on causation and in some cases, prevention of autism. This runs counter to autistic community priorities. This session will be a time to reflect on how this approach to autism research does a disservice to our community, and discuss new approaches. We’ll discuss research avenues that have tangible benefits to the autistic community and how we can incorporate community-based participatory research approaches. 

Tuesday, September 12, Session C(3.30-4.45 ET): Autism and Neurodegenerative Conditions

Neurodegenerative conditions occur when cells in the central nervous system (CNS; i.e., brain/spinal cord) are progressively breaking down or getting worse, usually in an irreversible way. Some common examples are Alzheimer’s and Parkinsons. This research presentation, followed by discussion, on neurodegenerative conditions will discuss the higher rates of these conditions in the autistic community and how we can better support autistic people with neurodegenerative conditions. 

Thursday, September 14, Session A (12-1:15 ET): Autism and Sleep Deep Dive: What Do We Need To Know?

Autistic people of all ages are more likely to have poorer sleep quality and sleep disorders, but most of the research is done on children. We’ll discuss current gaps in existing research and what autistic people prioritize for the direction of sleep research. 

Thursday, September 14, Session C (3.30-4.45 ET): Autism and Chronic Physical Illness: What We Don’t Know

Autistic people are more likely to have physical chronic health issues, such as Ehlers-Danlos, migraines and gastrointestinal issues, but there are many things that we still don’t know about why and what that means for our community. We’ll hear from researchers looking into these subjects and discuss what it means for our community and what research would be helpful to autistic people with these conditions. 

Friday, September 15, Session A (12-1:15 ET): Ask A Bio-Neuro Researcher

This is a town hall for autistic folks to ask any and all questions to bio-neuro researchers. We will invite all autistic attendees to discuss topics such as: what research on a topic already exists, how research should be done, ethical concerns, and the importance of including autistic people meaningfully in leading research. This session will help participants flesh out unfamiliar concepts or confusing issues in the biology and neurology track, and prepare them to engage in self advocacy in the research field, but also in medical contexts.

Friday, September 15, Session B (1.45-3 ET): Autism, Apraxia and Dyspraxia: What Self Advocates Want to Know

Self advocates will lead a discussion about the connections between apraxia and dyspraxia and autism. Much of the research on this topic does not include autistic people with apraxia and dyspraxia and does not take into account community priorities. Self advocates will discuss what they want to see from research on this topic.

TRACK: Health Care

Monday, September 11, Session C (3.30-4.45 ET): Introductions and Discussions of Current Research
Our first session in each track will discuss the current state of research, which includes ethical concerns, how research includes autistic participation, what areas are under researched and where we should go from here.

Tuesday, September 12, Session B (1.45-3 ET): Receiving Health Care as an Autistic Person 

In this session, speakers and attendees discuss the changes that need to be made to our health care system to create one that works to support autistic people in all areas of health care. We’ll talk about current research on this topic and discuss gaps in the research. We’ll also discuss how to collaboratively implement increased accessibility to medical professionals to improve healthcare outcomes in the future, as well as make policy changes based on research. 

TUESDAY, September 12, Session C (3.30-4.45 ET): Autism Diagnosis Across the Lifespan: Prevalence and Practices

This session will discuss a number of topics related to autism diagnosis, including prevalence rates, diagnostic disparities, self-advocate led autism diagnostic criteria, and late diagnosis. We’ll have speakers and then time for discussion.

Thursday, September 14, Session A (12-1:15 ET): Accessible Health Communication

It’s crucial that autistic people receive clear, accessible communication on health related topics. We’ll discuss how to improve access to care and provide resources for our community in different areas, such as preventative care. ASAN staff will discuss lessons from the ongoing COVID-19 pandemic on the need for Plain Language and Easy Read translation and outreach to self advocates on these topics. 

Thursday, September 14, Session C (3.30-4.45 ET):  Medicaid, Medicare and Health Outcomes 

Speakers will discuss access to healthcare for autistic people on Medicaid and Medicare, especially disparities in care and how policy and process changes can better serve autistic people. We’ll also discuss access and funding for home-and-community based services and related topics to improve health outcomes for autistic people using these services. 

Friday, September 15, Session A (12-1:15 ET): Racial Disparities in Autism Diagnosis and Health

This session will specifically address the intersectional experiences of autistics of color, as well as discuss the medical industrial complex (MIC) which disproportionately is harmful to and inaccessible for people of color. We’ll discuss the continued impact of racial disparities in diagnosis on communities of color, and how this ties in with the school-to-prison pipeline. We’ll talk about the need for research that identifies this impact as well as the need for solutions. 

Friday, September 15, Session B (1.45-3 ET): Current and Future Directions of Physical Health Research

This session will discuss how physical health research can better include autistic people in meaningful ways. We’ll hear from researchers and autistic people working on participatory research and discuss how other researchers can implement these approaches.  

TRACK: Services and Supports 

Monday, September 11, Session C (3.30-4.45 ET): Introductions and Discussions of Current Research

Our first session in each track will discuss the current state of research, which includes ethical concerns, how research includes autistic participation, what areas are under researched and where we should go from here.

Tuesday, September 12, Session B (1.45-3 ET): HCBS and Waiver Services:  How Research Can Support Policy Recommendations

Our panel will discuss how we can better identify best practices and disparities and access to services and supports. Research must be used to formulate policy recommendations and create policy change. We’ll discuss systems fragmentation and the many weaknesses of our current systems to provide these services, and how we can use research to advocate for change.

Tuesday, September 12, Session C (3.30-4.45 ET): Alternative and Augmentative Communication (AAC) Access

A panelist of autistic people who use AAC will discuss their priorities for autism research and the need for community-based participatory research approaches for research into AAC. We’ll discuss the current and future directions of research on these topics. We’ll also discuss issues with access to AAC. 

Thursday, September 14, Session A (12-1:15 ET):  Employment Services 

This session will be a panel where panelists will speak on employment services, and how research can be used to create better systems for competitive integrated employment. We’ll discuss barriers and racial disparities in current services. We’ll also have a discussion where self-advocates discuss what they want to see from research. 

Thursday, September 14, Session C (3.30-4.45 ET): Beyond Behaviorism Ages 0-22: What does the future of services research look like for autistic youth?

Current autism services are focused primarily on a behaviorism approach, which our community condemns. We will discuss how we can create an education and services system for autistic youth that matches the priorities of the autistic community. 

Friday, September 15, Session A (12-1:15 ET): What We Want to See from Research on Independent Living

Speakers and attendees will discuss barriers to independent living and how community-based participatory research can create innovative programs that match our priorities. We’ll discuss supported decision making, access to service, and how we can move toward self-directed services.  

Friday, September 15, Session B (1.45-3 ET): Positive Behavior Supports and Measures of Quality of Life

Current autism services and research do not always take into account our measures for quality of life, and usually defines these measures in more restrictive ways than our communities do. This session will discuss services quality measures as defined by people with I/DD as well as barriers to access current supports and services.

TRACK: Adulthood and Aging

Monday, September 11, Session C (3.30-4.45 ET): Introductions and Discussions of Current Research

Our first session in each track will discuss the current state of research, which includes ethical concerns, how research includes autistic participation, what areas are under researched and where we should go from here.

Tuesday, September 12, Session B (1.45-3 ET): Accessing Higher Education 

Panelists will discuss barriers to higher education, focusing on student-defined success, as well as discussing the various postsecondary education options autistic people have, while also pointing out the limitations of existing services. 

Tuesday, September 12, Session C (3.30-4.45 ET): We All Grow Up: Supporting Puberty, Reproductive Health, and Sexual Education for Autistic Youth and Adults 

Panelists will discuss the ways in which people with I/DD often are not given access to sex education and information about reproductive health. Topics touched on will include consent education, equitable access to sexual education, LGBTQ+ competency, and other reproductive and sexual health issues that affect folks at different stages of their lives.

Thursday, September 14, Session A (12-1:15 ET): Aging and Supports for Older Adults 

This session will discuss aging and autism and the need for research and attention to the consequences of aging. This includes ensuring that autistic people can age in place and handling when caregivers age or pass on. 

Thursday, September 14, Session C (3.30-4.45 ET): Understanding Parental Rights & Resources for People with Intellectual & Developmental Disabilities 

Speakers will discuss discrimination against parents with intellectual and developmental disabilities as well as the under research of autistic parents who raise autistic children. Panelists will discuss equitable access to reproductive care before, during, and after pregnancy, go over legal rights that people with I/DD have, and discuss contributions that parents with disabilities can bring to research. 

Friday, September 15, Session A (12-1:15 ET): Transition Services

This session, speakers will discuss transition services and innovative practices within social and community integration. Speakers will touch on good goal setting as well as preparation for employment and/or higher education. After mini presentations, there will be time for attendees to ask questions.

Friday, September 15, Session B (1.45-3 ET): Employment across the lifespan

This session will discuss what employment can look like for autistic people across one’s entire lifespan. Speakers will provide insight on options for support, such as acquiring accommodations, pushing back against discrimination, and navigating raises, promotions, and retirement.

Resources and Partners

To learn more about the work that ASAN and Drexel are doing on research: 

Contact

Explore

Get Our Newsletter