Health Care

“Nothing For Us or About Us, Without Us:” Self-Advocates Add Their Voices to Autism ECHO Programs

ECHO Autism communities are the first ECHO programs to regularly include people with lived experience on ECHO sessions as equal experts and teachers to other providers.
A light skin-tone man with glasses laughs with a dark skin-tone woman in a hijab at the 2023 MetaECHO conference

“It is really important to have lived experience at the table,” Ben Moore, Self-Advocate Faculty for the ECHO Autism Hub at the University of Washington, explains. “Pull us in.”  

Ben is part of the team of self-advocates who teach, advise, and develop programs at the University of Washington. These ECHO Autism communities are the first ECHO programs to regularly include people with lived experience on ECHO sessions as equal experts and teachers to other providers.

As Dr. Kristin Sohl, founder of ECHO Autism, notes, “Just this year, we also added our first provider who also has autism herself. This is what changes paradigms of care.” 

Three ECHO program autism self-advocates present at the MetaECHO conference

From left to right, autism self-advocates John Lemus, Sydney Kresbach, and Ben Moore answer questions after their panel at the 2023 MetaECHO Conference in Albuquerque, New Mexico. Credit: Project ECHO

A New Type of Teaching 

The self-advocates are integral to every aspect of their ECHO sessions, providing nuanced recommendations that range from medications to familial issues, clarifying questions, correcting misinformation, and presenting didactic.  

By including the self-advocate perspective since 2015, ECHO Autism demonstrates the value of insight that comes from lived experience and emphasizes the ECHO Model’s “all teach, all learn” approach. “Say we are in a session and have a case with an eight-year-old child,” Ben offers as an example. “I find myself going back into my memory: ‘Did that ever happen to me?’ I’m able to provide perspective on how a person might feel.”  

“I do this work with Project ECHO because I want people with disabilities to live in a better world,” John Lemus, another self-advocate, shares. “I’ve presented at sessions on neurodiversity, communication, and supporting non-speaking individuals. It’s a different perspective than they would get from non-autistic peers,” Lemus continues. “Helping people with disabilities is framed as a struggle or an inconvenience, not a way of life. So we need to do more.” 

Autism self-advocate Ben Moore laughs and speaks with panel attendees.

Talking with attendees of the MetaECHO conference, autism self-advocates Ben Moore and Sage Davis share their lived experiences highlight the importance of self-advocate work. Credit: Project ECHO

Changing Perspectives, One Clinician at a Time 

At the most basic level, the autism self-advocates disrupt traditional hierarchies around which perspectives should influence patient care. They address the unknowns and misunderstandings clinicians may have around autism: how it works, how it presents in concurrence with other conditions, and how it may be impacting families.  

Sydney Krebsbach, who has been one of the ECHO Autism self-advocates for four years, sees their impact in how providers interact with their patients living with autism. “They learn more about what it is really like to move through the system,” she says, referring to the range of societal factors that impact life outcomes: access to services, health challenges, and the struggles that come with living in an ableist health care environment.     

One of the biggest and most immediate drivers of change the advocates see is with language. “In the past, when we would have these case studies, the way that people would talk about people with autism was, in my opinion, degrading,” Ivanova Smith, Advocate Discipline Lead, explains. “We really try to educate on language, talking about the person and the family in a way that’s respectful.” 

Ben offered a specific example of why accuracy and respect matter for treatment at the patient level, noting, “It jumps out every time a presenter uses a term like ‘high-functioning’ or ‘low-functioning.’ We don’t actually use ‘functioning’ this way because for a person with autism, your level of adaptability, of functioning, changes every moment of every day. That was a big one to address over time.” 

A Vision for Systemic Change in Autism Care  

The advocates aim to change the vision that providers and families have for care. As Ivonava, who was non-verbal until age five and is now married with two children, explains, “I remind people that we really need services that acknowledge people with intellectual disability as having a full lifespan. People with intellectual disabilities do grow up; we become adults. And we need to be prepared for adulthood.” 

Seven people in the ECHO Autism community, including 3 men and 4 women with varying heights and skin tones, and one woman in a hijab, stand together.

Members of the University of Washington ECHO Autism team have been part of the first ECHO program to regularly integrate self-advocate perspectives into the ECHO program curriculum. Credit: Project ECHO

ECHO Autism self-advocates exemplify why “all teach, all learn” is a core part of the ECHO Model – and a principle that has room to grow. “When we started joining sessions as self-advocates, people would ask questions like, ‘Is this work even real?’” Sydney shares. “We would always say, ‘Yes, this [being a self-advocate] is a real job. We are living our degree, and we are passionate about advocating for other people with autism.” 

To learn more about ECHO Autism at University of Washington, email and visit their website here.

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Media Contact:

Ben Cloutier
Director of Communications & Marketing
Project ECHO
(505) 252-4157