Participatory Research

Module 1. Introduction (Duration: 0:40)

- Hi, my name is Liliane Savard. In this module, you will hear why Community Partnerships in Autism Research or CPAR might be good for you. You will hear from research partners themselves. You will be introduced to the history of autism research. You'll learn about ableism and how it may affect research. Finally, you may discover some unexpected benefits of doing this type of research. We have also added optional videos and readings if you want more details or knowledge.

Module 1: why CPAR?

• Lesson 1: Hear from research partners
• Lesson 2: History of autism research
• Lesson 3: Introduction to ableism
• Lesson 4: Benefits of involving community partners
• Something to think about

Lesson 1: Hear from research partners

Research is a formal way to look for answers to our questions so we can be confident in the findings. One way to be more confident in research findings is to involve people with lived experience.

Community partnerships in autism research (CPAR)

CPAR stands for Community Partnerships in Autism Research. In CPAR, we call autistic people and other team members research partners. Research partners include autistic and non-autistic people:

• People on the autism spectrum
• Researchers
• Family members and supporters
• Professionals like doctors, therapists and teachers
• Other community members or groups.

People often have more than one role or identity.

Let's hear from research partners about why CPAR is important.

Hear from research partners

Non-autistic researcher, professor and senior academic leader

• Language in the way we communicate is important.
• Research partners change how we think about autism research.
• Join us to address questions important to autistic research partners.

(Duration: 1:25)

- Hello. I've been asked to talk a little bit about my experience working on the CPAR project that really focuses on allowing the individuals that you're doing research for to really be a part of the design of the research, the implementation, the writeup of that research.

I found in our project with our autistic partners, it's been an extraordinary experience for me as a seasoned researcher and someone who prided herself as being a patient and family centered care practitioner.

I've learned so much from my autistic partners, and how I should be thinking about research questions and what I'm interested in may not necessarily be what's important to them or what is of interest to them.

I've also learned from my autistic partners that the language that I use and how I communicate my message really makes a difference. And so, I've really changed how I teach my course in autism, and how I write my syllabus and how I think about differences and strengths.

So, I continue to enjoy my experience working with autistic partners on research, and I know I have a lot more to learn from them and I hope you will join me in similar research so that we're asking the right questions and answering the questions that our autistic partners really want to answer.

Thank you!

Non-autistic parent

• Improve research design so autistic people with more support needs are not excluded from research.

(Duration: 1:01)

- I am the parent of two boys with autism or two autistic boys.
One of the things that's been good, or I think is helpful and necessary is, you know, there have been some studies that my boys have, we've tried to participate in and have been unable to participate in due to the severity of their autism, of their symptoms.

We would've had to look at, you know, could there be modifications? How could we modify this so it wouldn't be as intimidating? And we probably would've needed to build in more time.

Individuals who are as significantly affected by autism as my sons, tend to get excluded from a lot of studies because they're just, they're not as easy to study. And that with a little bit of collaboration and preparation, can be overcome.

Autistic partner

• Create research that meets people's needs.
• Promote respect and accessibility.

Duration: (1:19)

- For me, being involved in this, you know, important research, is actually understanding the individual needs of the person that's priority number one.

In my, you know, my work, because their access needs, is their… It's essential to their daily lives. And with that in mind, is how they interact with others, and also is how they communicate with others too, as well, but also it's how they learn.

And for me, as an individual of color that has autism, uh, I see this in a very, you know, perspective view of why I join. I join because it's an opportunity to rewrite the mistakes that have been plaguing us for forever, no if, ands, or buts. But I want to make sure that the information we give you, the resource we give you, the technology, the advancement, etc., that we give you, that it works for you and you alone, nobody else.

That individual kindness, compassion and you know, respectful of one another. And that's how we'll, you know, thrive together and we'll survive together.

Thank you.

Non-autistic researcher

• Have a real-life positive impact on the community.

(Duration: 0:31)

- Hi, my name is Dr. Liliane Savard. My favorite type of research is research that's done with research partners. Because then I know that it has a chance of having an impact. It's not just an idea that comes from my brain as a researcher, but it's really pursuing a question, an issue that is important to my community.

Autistic partner

• Learn research skills.
• Know what’s important to our community.

(Duration: 0:19)

- Hi, my name is Nicole. It is important to do research because you'll learn research skills and how to complete a research project. Including self-advocates is important because we know what is important to our community.

Autistic partner

• Opportunity for autistic and non-autistic people to talk together.
• Research impacts what is available for support.
• Involve autistic people in decision-making about research.

(Duration: 1:34)

- I think community partner research in autism is important um because it gives an opportunity to really have dialogue between um researchers who um often aren't people who've had the experience of um living with autism or even necessarily had a lot of experience with autistic people in person um, to have input and hear both our needs and what we're like as people and to see both our strengths and our challenges and um how to make research that's really effective um.

Also, for us to bring our own ideas into that as community partners. Autistic people haven't been as much a part of the decision making and of how research has been done and thereby what's available to us in the community and um, I really look forward to seeing the community partnerships that are possible to change that. So that's, I think, why we need community partnerships um and why I think it's a great thing for our community.

Lesson two: History of autism research

Until recently, research was done without asking autistic people what they want. Parents often spoke for autistic children and adults through surveys or interviews. The research was often not on topics that autistic people say are important to them. For example, improving their quality of life.

Optional resources

Understanding the autistic experience

A lot of research has included autistic people as subjects but not as research partners. Non-autistic researchers may have difficulty understanding the experience and behaviors of autistic people. Autistic people should always advise research done about them.

Optional resources

Example: stimming

Some intervention research focuses on stopping autistic people from making repetitive or stereotypic movements called stimming. Research done with autistic research partners shows that stimming helps some autistic people manage their stress. If autistic people had been consulted, they might have explained that stimming is not a problem for them. Optional resources.

Consequences of research without inclusion

Autistic research partners can help avoid biases and invalid assumptions in research. Not including autistic people as research partners can have important consequences. Biases and incorrect assumptions in the research process affect how data reflects the real world (validity). Invalid data leads to invalid research conclusions. These invalid research conclusions sometimes lead to harmful practices. Some of these harmful practices are still in use today.

Optional resources

Example: research on autistic meltdowns and shutdowns

The researchers created a form for autistic people to tell their doctor about their meltdowns and shutdowns. Autistic people said the form was not helpful as it felt like there was a problem with the way they responded to stress. We could have avoided this if we had included autistic people on our team from the start. We now include autistic people on our team from the beginning of a project. Comment from an autistic participant. "It is sad how many autistics still believe they are the issue, like this survey continues to act like."

(Duration: 4:00)

- Hi! My name is Laura Lewis and I am a nurse and a researcher at the University of Vermont. I wanted to share an example of one way that working with community partners has made my research more meaningful, respectful, and accessible.

A couple of years ago, I led a research team in a study about what it is like to have a meltdown or a shutdown for autistic adults. When we were done with this study, our team decided to use our findings to create a communication tool that health care providers could use to talk to their patients about meltdowns and shutdowns. We called this tool the Meltdown & Shutdown Scale for Autistic Adults, or the MSSAA. We came up with a form that patients could fill out, answering questions about what their experiences were like with meltdowns and shutdowns. We thought health care providers could use this form to help Autistic patients with any safety risks that they may have when they are having a meltdown or a shutdown.

As a first step to see if this communication tool would be helpful, we surveyed Autistic adults to see what they thought of the MSSAA. We wanted to know if they thought it was easy to use, if it made sense, and if it captured information they thought was important to share with their health care team. We planned to survey about 300 people. But instead we had to stop our survey after just 54 responses, because we already knew the answer: this communication tool was NOT supported by the Autistic community.

As our team tried to understand where we went wrong, we asked a few members of the community to join our research team. These were Autistic adults who had lived experience with meltdowns and shutdowns. They were also well connected in the autism community and could speak to a broader picture of how others might feel about our communication tool. In just a few meetings, these community partners identified major flaws with the tool, flaws that helped us understand the feedback we heard from the community.

For example, these community partners pointed out that the very idea of this tool made it seem like there was a problem with the way that Autistic people responded to stress. It made it seem like the core problem in meltdowns and shutdowns was with the Autistic person – not with the environment that caused them stress to begin with. Our Autistic partners helped us understand how this is offensive to Autistic people and can actually cause harm in a health care setting.

Our community partners also helped us understand that answering questions on a form might not be an accessible way for all people to communicate with their providers. They helped us understand the importance of offering options for writing in open-ended responses, drawing, and having a conversation with providers, for example.

Finally, and perhaps most importantly, our community partners helped us understand that safety needs to come first. For many Autistic people, the main reason they do not talk to their health care providers about meltdowns and shutdowns is because they do not have a relationship with their provider where they feel safe having these conversations.

Rather than focusing our research on what structured questions to ask patients on a form, we need to start with research that can improve providers’ understanding of autism. We need to work on making health care offices a safe place for Autistic people to share their needs and trust that they will be heard. Until we work on that, any communication tool that we come up with is unlikely to meaningfully help Autistic people.

If we had included community partners on our team at the start, we could have saved a lot of time, effort, and cost – and frankly, we could have conducted better research. Working with community partners on this study and others has transformed the way I collect data and interpret findings. I now work with community partners from the very start of each study I conduct. We work together to develop research questions that are important to improving the lives of Autistic people. These partners also help make sure the ways we conduct our studies are inclusive and accessible. As a researcher, I cannot overstate the value that community partners have added to my work.

Lesson 3: Introduction to ableism

Ableism is thinking disabled people cannot do things or need to be, " fixed"; thinking disabled people are less than others; treating people badly because of their disability; excluding people because of their disability. Optional resources.

Knowing about ableism is important. Ableism introduces biases into autism research. It's often hard to see ableism because we learn it from our daily life. Internalized ableism is when people with or without disabilities are not aware they have ableist beliefs. Systemic ableism is everywhere in society. It's a part of all systems and institutions. It makes us think there is a right way to be or to do things. Optional videos.

Video example: Uncovering ableist biases (simulated interaction)

An autistic research partner schedules his focus group. He has more than one identity.

(Duration: 2:11)

Ableist bias. This is a simulated interaction.

Liliane (non-autistic researcher): “Hey hi Michael I'm so happy you're interested in joining uh this research project. So the autistic participants will meet on Wednesday um around 3 o'clock. Will that work for you?

Michael (autistic research partner): “Yeah, I I think I can come Wednesday at 3:00 um. Uh is there any other groups that are happening? You said the autistic participants.”

Liliane: “Yes, well in this project we have autistic people, but we also have um a group of researchers and a group of um healthcare providers and a group of parents”

Michael: “Okay that that that's interesting so now if I'm a autistic person and also a uh researcher and a parent how does that work?”

Liliane: “Oh I didn't think about that. I guess I guess you could choose which group you want to be part of. Thank you for making me think about it!”

Narrator: “When setting up focus groups we did not realize that people might have multiple identities.”

Liliane: “So you which group would you like to join?

Michael: Well, I, I let let's say how about the, the parent and researcher, I'm sorry the autistic people and researchers’ groups”

Liliane: “Yes okay so I'll sign you up for uh those two groups.

Michael: “But yeah, that, that's helpful. Yeah, I'm, I just wanted to make sure that that we thought of all our bases.

Liliane: “Yeah, that's you know, how we're really doing things better when we have all our brains together. Thank you for your input on that Michael.”

Michael: “You're welcome.”

Example: Uncovering ableist biases

In a focus group with autistic people, we use this prompt: “What would make you feel comfortable in a group that also includes researchers and parents?

Some autistic partners noted that the question made it seem like autistic people could not be researchers or parents. Autistic people have many life roles: autistic parents, autistic researchers, autistic healthcare providers and more.

We used to think of partners as parents, autistic people, or researchers. Now we think of autistic people in all of those groups.

Lesson 4: Benefits of involving community partners

Community partners:

• Bring knowledge from living their daily lives
• Know what problems are most important to them
• Improve research design so it is valid and accessible
• Raise awareness of ableist biases in research
• Help research focus on what has real life impact

Something to think about: Real life impact

Important research starts with a topic that is a priority for the community. What autism topics are you interested in researching?

• Physical health
• Mental health
• Employment
• Education
• Communication
• Relationships, gender and sexual health
• Therapeutic interventions
• Autism in society
• Autism across the lifespan
• Quality of life
• Features of autism
• Other:

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