Family ECHO: Autism works to fill the care gap for children with autism
When her son Henry was diagnosed with autism just before the age of 3, Amy Hess was overwhelmed, resistant to accepting the diagnosis and fearful of what the future might bring. But with the encouragement of a friend and resources from Nationwide Children’s Hospital, Amy learned that as a parent, she was capable of building a life where Henry could flourish.
Now, as the chair of the Family Partners committee for the Autism Speaks-supported Autism Care Network (ACNet) and Nationwide Children’s Hospital, an ACNet site, Amy is helping other families develop the skills and knowledge they need to better care for their autistic loved ones. Her family training series, Family ECHO: Autism, was designed to build caregivers’ confidence in raising a child with autism through learning and discussion with experts and community members.
In this Q&A, Amy shares more information about Family ECHO: Autism and discusses the impact it has had on the autism community worldwide.
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What is Family ECHO: Autism and how is it meeting the needs of people with autism and their families?
Family ECHO: Autism is a Zoom-based training series developed in 2020 at Nationwide Children's Hospital in response to the COVID-19 pandemic. Influenced by family/caregiver requests for behavior management and family supports, the aim of the series is to make information more accessible and help families build their knowledge and confidence in raising a loved one with autism.
Family ECHO: Autism is designed based on an education model that is traditionally reserved for practitioners and community providers. The series gives participants the opportunity to engage in a learning community with other parents and caregivers while learning from a multi-disciplinary team of autism specialists about topics that impact the lives of individuals with autism.
Each session is designed to educate families, build skills and facilitate discussion on a participant-driven curriculum of topics. By utilizing video conferencing and offering sessions later in the day to accommodate busy schedules, we’ve had the unique opportunity to move expert guidance out of the clinic and into the homes of families.
What can families expect to gain from the Family ECHO sessions?
Family ECHO: Autism follows the Project ECHO model of “all teach, all learn,” encouraging participants to engage in discussion as well as learning. We strive to offer an environment where learning can occur, questions are encouraged and caregivers are provided with concrete action steps that they can apply at home.
Participants can expect a robust learning environment that begins with an interactive case-based discussion designed to foster questions and recommendations. Often, after the case study, the chat is filled with suggestions and successes from other family members near and far. Participants are also given access to recordings of each session, as well as a list of resources from the Autism Speaks Autism Response Team that allows them to continue their learning at home.
What are your biggest focus areas in terms of session topics?
Family ECHO: Autism has a commitment to incorporating the family voice in all we do. The topics covered in the series are informed deeply by autistic and family perspectives and the Autism Care Network’s more than a decade of work focusing on improving care for individuals with autism. Based on clinical feedback from families, the ACNet has identified irritability, ADHD and anxiety in children as prominent areas where caregivers are seeking more education and training. New topics for the 2023-2024 series will also include discussions on sleep, behavior and the transition to adulthood, with more planning for 2024 to include catatonia, aging and autism, and empowering women of color to lead care teams for children with autism.
Participants are also continuously offered the opportunity to inform our team about topics they would like covered in the series. Facilitators use these sessions as an opportunity to ask questions and gather information that helps them guide future priorities and clinical care and intervention pathways.
Who do you think would benefit the most from participating in this series?
Everyone from families, parents, siblings and caregivers of newly diagnosed children to those caring for autistic young adults can benefit from this series. As a parent of a young adult with autism myself, I realize the need for continuous learning across the lifespan that allows families to address their loved one’s health and life needs as they age.
When you participate in Family ECHO: Autism, you are learning with national experts and your learning is not confined by where you are regionally. Typically, caregivers of people with autism receive very little education, training and empowerment on addressing and managing care. Family ECHO: Autism encourages families to build confidence in their role on their loved one’s care teams.
Can you share any data that shows Family ECHO’s impact on the autism community?
We've had over 12,000 participants with registrations coming from all 50 U.S. states and the District of Columbia. We have also seen registrants from 68 countries from Australia to Zimbabwe, with participants speaking 65 languages. English and Spanish are our top spoken languages, and we now offer live in-chat Spanish assistance for Spanish speakers.
We are excited to see that the majority of our participants are parents, with some paraprofessionals, siblings, grandparents and others. Participants are also reporting a high level of satisfaction with the series, with almost 90% saying they are highly satisfied or satisfied. Attendees report their favorite aspects of the series are the resources, topic presentations and case-based discussions.