Advising Research through the Lens of Lived Experience: How Individuals with Disabilities and their Families are Shaping Research

By Charlene N. Rivera-Bonet | Waisman Science Writer

NOTE: Each individual interviewed for this story stated their preference between person-first or identity-first language. The language used reflects the preference of each person. Researchers interviewed use identity-first language in alignment with the preferences of many of those in the autistic community.

Karla Ausderau and co-researchers Marquis Garner and Edward Kastern present at the Waisman Center
Karla Ausderau and co-researchers Marquis Garner and Edward Kastern present at the Waisman Center

Who is considered an expert in autism? Or cerebral palsy? Or Down syndrome? The word expert is often used to describe someone who has studied a topic extensively, whether through research, through school, or practice. But what about people with lived experiences?

The lived experiences of individuals with intellectual and developmental disabilities (IDD) offer a unique and deeper perspective, which is valuable when considering the research questions that are of most importance to themselves and their community. The ups and downs, what works and what doesn’t, what they need and what they don’t. Many investigators at the Waisman Center are turning to individuals with lived experiences as advisory board members to provide expertise and perspective that researchers may not have.
Advisory board members with a lived experience – whether that is a person with an IDD or a family member – are working to make IDD-related research more meaningful, accessible, and representative of the views, priorities, and experiences of their community. These individuals might traditionally be considered participants in a research study, but now work side-by-side with researchers as collaborators.

“NOTHING ABOUT US WITHOUT US”
“The adage, ‘nothing about us without us’ is a really important thing to think about as an autism researcher and as a disability researcher more broadly,” says Lauren Bishop, PhD, Waisman investigator and associate professor in the Sandra Rosenbaum School of Social Work. The disability community has been historically left out of conversations about research, Bishop says. “So, making sure that you’re partnering with folks who are members of the community throughout the research process is really important to maintain the integrity of what you’re doing, and to produce research that is impactful and meets community needs.”

Karla Ausderau, PhD, professor of kinesiology, Occupational Therapy Program, formed her first advisory board in 2016 to get feedback on an intervention her lab developed for improving feeding in autistic children. “We had parents who were an advisory board and they gave us feedback on the intervention. What was feasible, what might be burdensome, what types of content we should include in the parent training manuals and how to best deliver that content,” Ausderau says.

The Ptaszynski Family
The Ptaszynski Family

Katy Ptaszynski offers her perspective as a parent on behalf of her son Xander, a 10-year-old autistic boy with ADHD. She is part of one of the advisory boards from the lab of Brittany Travers, PhD, associate professor of kinesiology. For Ptaszynski, making the decision to participate on the board was tough, because she considers herself to be neurotypical, and is representing her son, who is not. But she also thinks it’s important to represent people from all ages. “So as a parent, I’m kind of in that role right now. I want to be able to speak on behalf of my son, but at some point, I’d really like him to be able to advocate for himself,” Ptaszynski says.

Travers has two advisory boards for her research projects on autism and motor performance. “They’ve offered up paradigm-shifting information and interpretations of our data that have really helped us plan future experiments and research,” Travers says.

Carlos Schaut is an autistic man who has been using a board to spell as his preferred method of communication for 21 years. He visited the Waisman Center Clinics when he was younger, but now offers his expertise as an autistic speller to Travers’ research. “I was invited [onto the board], and so I wanted to offer my input as a speller,” Schaut says. “It has been important to add my words to the discussion and offer input. I think it is very important to include non-speakers because we have been left out for so long,” he adds.

THE PROCESS OF ESTABLISHING A BOARD
For researchers, it is important to have individuals from different backgrounds, levels of need, and abilities in order to make their research more accessible and representative of the community. “It’s been very interesting to me to just see some of the differences between the board members and how they talk about autism and what’s on their mind in terms of their needs,” says Travers about her advisory board dedicated to making her lab more accessible to the Spanish-speaking community.

“We’ve worked really hard to make sure that our team is diverse, and that we have members from diverse racial and ethnic groups and regions, to make sure that we are capturing different perspectives,” says Sigan Hartley, PhD, professor and 100 Women Distinguished Chair in Human Ecology. Hartley studies factors that shape healthy development in people with neurodevelopmental disorders such as Down syndrome.

Ultimately, the goal is to produce research that is meaningful to the community. Because of this, the community board’s involvement in research projects begins even before the project takes shape. “The key part, from my perspective, is that those people are brought in from the time that you are thinking about the project, and drafting the proposal. Not as an afterthought,” says Rebecca Alper, PhD, assistant professor of communication sciences and disorders. Alper’s work focuses on improving language, academic and health outcomes for at-risk children through family-centered early language and literacy intervention.

The process of creating an advisory board requires a lot of thought and intentionality. “Thinking about what is the purpose? How are they going to help move this [research] forward? And what is the mechanism for implementing change based on the advisory board input? And I think that starts at the very beginning,” Ausderau says.

Once the boards are formed and expectations for each side are clear, they meet to discuss research. These meetings typically include the researcher presenting project ideas first, and then having discussions with the board. “When Brittany [Travers] or Emily [Skaletski, graduate student in Travers’ lab] explain the research, sometimes it’s a little daunting, it’s a little difficult to understand, but they definitely break it down in a way that’s translatable,” Ptaszynski says. After that, “we comment as we feel led,” Schaut says.
The next steps are vital: listening and implementing. “I think that would be very frustrating, if you bring a community partner in to give feedback, but there was actually no room to change anything. That would be literally just lip service. So really going into it as a partnership. Not just a box to check off on your list,” Alper says.

This was one of Travers’ concerns when first forming er board. “I was really nervous about it at first. The research that I do is my obsession and it felt really scary to open that up to another group of individuals,” Travers says. “And at the same time, I just have such a respect for and passion for working with autistic individuals. I didn’t want to disappoint the community advisory board if there were things that they recommended that we couldn’t implement.” However, this didn’t stop her from forming a board, and she is reaping the fruits of her choice. “And I will say our community advisory board is probably the best thing that’s ever happened to our lab in terms of the research. It’s provided us with really amazing insights,” Travers says.

When Hartley and her team were designing a study, one of the things that families brought up was providing research participants with more immediate and meaningful information stemming from their participation. They came up with the idea of a “health report card”, containing a summary of the child’s cognitive, health, and behavioral performance based on the measures collected from the study. In addition to sending this “health report card”, families suggested sending a list of resources so that the family could seek out more information or services if appropriate. This helped make Hartley’s research more meaningful to the community.

BEING PART OF THE RESEARCH TEAM

Karla Ausderau and co-researchers Marquis Garner and Edward Kastern
Karla Ausderau and co-researchers Marquis Garner and Edward KasternAnother way individuals with IDD bring their expertise to the research team is by becoming a co-researcher. In this position, they help with the details of the research process, including data collection, analysis, and interpretation.

Amy Frechette is a co-researcher in one of Bishop’s studies that looks at using machine learning algorithms to establish autism mortality risks indices. Co-researchers are community members that are embedded within research teams working side-by-side as collaborators. Frechette was diagnosed with autism (Asperger’s at the time) in her late 20s. She has become an avid advocate and leader, serving as a governor appointed self-advocate to the New Hampshire Council on Autism Spectrum Disorders, and providing support to the Leadership Education in Neurodevelopmental and Related Disabilities Program (LEND) in her state. For Frechette it is important for those with a disability to be included in research. “It goes with a lot of different work that I’ve done over the years. And it’s a way for me to help move our country’s agenda a little further ahead, because they always tell me that people with disabilities are an underserved, underrepresented population,” Frechette says. So, when she got the invitation to become a co-researcher with Bishop, she thought “Oh, yeah, well, this is a nice opportunity. I should do it.”

Part of Ausderau’s research is thinking about how to build capacity for people with IDD and their care partners to actively engage in research. In collaboration with the Special Olympics and other universities, Ausderau developed training modules that help individuals with IDD learn what research is, why their involvement is important, and how to be involved. To her, it is not only about bringing them to the table, but also providing them with the tools to give them the confidence to contribute to the conversations. She has also helped develop an ethics training specific for individuals with IDD in research teams. “How can we think about regulations at an institutional level to facilitate and make things more inclusive?” Ausderau says. Part of this work, is also training neurotypical researchers to work with individuals with IDD and increasing university research accessibility for individuals with IDD as Ausderau and community members have addressed.

Co-researchers in Auderau’s lab are involved in all aspects of a project. “They help to think about what questions we’re asking. They will help us with recruitment, if they’re part of the IRB (Institutional Review Boards). They help us think about better ways to collect our data. They will help us with analysis and interpret the results we’re finding.” Ausderau says.

An example of this was an interview study they were doing with individuals with IDD. Team members suggested that they needed a more creative methodology because interviews and voice communication wasn’t always the best option for everyone. So, they adapted photovoice as an alternative methodology, using pictures to guide their meetings or discussions and findings. “And so that was a really instrumental time for us thinking about how can we use another methodology that’s already very valid in the literature and then adapt to meet the needs of the population we are working with,” Ausderau says.

BENEFITS OF PARTICIPATION IN RESEARCH TEAMS
Research from Ausderau’s lab has found that including individuals with IDD as co-researchers is both beneficial and feasible. Co-researchers find their work to be meaningful, and helpful for skill development. “One of the reasons I also wanted to join is I don’t know a lot about the research community, and it was just actually a great learning experience,” says Ptaszynski about her participation in Travers’ advisory board. “Some of the members of the board said that it was actually helping them learn to trust science more and understand scientific perspectives,” Travers says. Both advisory board members and co-researchers receive paid compensation for their work.

IMPROVED RESEARCH OUTCOMES BECAUSE OF INCLUSION
Alper, Ausderau, Bishop, Hartley, and Travers all agree that their boards and co-researchers have been highly beneficial to their research. “I think we feel more confident that what
we’re doing actually is going to meet a community need,” Ausderau says. “I think one of the most important things about the work that we do when we involve community partners, is it shortens the timeframe for getting research implemented and being taken out by our community members. Because if team members are on board from the very beginning, it really helps us know and have a better pathway for the types of research we’re doing and it helps us think about the implications of what we’re doing and then how to disseminate it.”


SELF-ADVOCATES BRING RESEARCH TO THE COMMUNITY

Maria Nogueron and Danny Chafetz and Sigan Hartley, PhD.

Maria Nogueron and Danny Chafetz (left) are part of the outreach team for the Alzheimer’s Biomarkers Consortium – Down Syndrome (ABC-DS) in the lab of Sigan Hartley, PhD.
Chafetz, a man with Down syndrome, and Nogueron, a mom of a woman with Down syndrome, bring their lived experiences and expertise in Down syndrome to recruit individuals to participate in research to advance understanding of Alzheimer’s in Down syndrome. They also share the science learned from studies in the lab with the community.