March 22, 2022

On-Time Autism Intervention Project uses the power of collaboration to help families navigate their child’s autism signs, diagnosis and beyond

The On-Time Autism Intervention (OTAI) Project began in 2018 and is a collaboration between the Haring Center for Inclusive Education and the UW Autism Center (UWAC). Funded through a Seattle Foundation grant, OTAI’s goal is to increase equitable access to timely diagnosis of autism spectrum disorder (ASD) and evidence-based intervention for young children, specifically focused on children ages zero through three years, and their families across King County. OTAI’s work is guided by four pillars: collaboration, on-time autism diagnosis, on-time and ongoing parent navigation and support and on-time child-focused autism intervention.

“This project is like a dream come true,” said director for the Haring Center Ilene Schwartz. “It provides an opportunity for the Haring Center and the UWAC to work together, to learn together and to benefit children and families in the community. We can integrate the strengths of both centers and build something that neither one of us could have done alone”

An early autism diagnosis is an on-time diagnosis

Entry into autism diagnosis and intervention services before three years of age is often referred to as “early,” but this project seeks to use evidence-based research to show that services for children from birth-to-three years old should be considered “on-time.” Their primary focus is to increase access to on-time autism intervention for all children affected by autism, with an emphasis on addressing health equity disparities by developing a framework for reaching traditionally underserved populations. To best serve birth-to-three providers and families, the OTAI Project focuses on three main areas: diagnosis, intervention and navigation.

“We don’t see it as a one size fits all approach,” said clinical psychologist and director of clinical services at the UW Autism Center Jessica Greeson. “We really try to tailor to each of the communities that we work with.” Greeson leads the project’s on-time diagnosis work and partners with King County’s birth-to-three providers to improve identification of children who may need an autism diagnosis. “I can optimize the number of kids I see when I work with providers, and they offer me information about the child in advance. It’s about reducing the redundancy. Families have to fill out the same paperwork and say the same things over and over, and it’s particularly hard to do when English isn’t your first language and you have translators translating the same things that don’t make any sense the first time around. We want to make it really easy and efficient for families.”

“There’s not a clear trajectory of what to do next when you’re diagnosed with autism.”

Katy Bateman, Haring Center research scientist

“There’s not a clear trajectory of what to do next when you’re diagnosed with autism,” said research scientist Katy Bateman, who works at the Haring Center and focuses on the navigation aspect of the project. “With autism, they diagnose you, tell you what’s important and then you get put on waitlists and families have to learn how to navigate that on their own. Birth-to-three providers are often a family’s first contact on their journey in special education and we want to make sure that they have the knowledge, resources and skills that they need to help families navigate their diagnosis.”

Developing new resources that are helping families

One of the most recent resources for providers and families that has come out of the OTAI Project is the On-Time Autism Intervention Podcast. Started in September 2021, the podcast, hosted by UW Autism Center staff Ashley Penny and Jessica Greenson, is targeted at parents of children three and younger who are interested in learning more about autism, autism diagnosis and autism intervention and resources for young children. Many parents of young children diagnosed with autism have little or no prior experience with autism and are looking for information and answers to help guide their early steps in this new journey, in accessible and digestible ways. The On-Time Autism Intervention Podcast provide parents with relevant information about characteristics of autism in very young children (0-3) as well as strategies for pursuing services, and transitioning into autism intervention, special education and more.

“The goal is to provide parents with information that is easy to understand and specifically tailored to young children.”

Ashley Penny, podcast co-host and research scientist at the UW Autism Center

“The podcast is for parents of children under three and it’s a chronological podcast,” said Ashley Penny, licensed behavior analyst and research scientist at the UW Autism Center. “It starts with those first conversations with a pediatrician and what those sound like, when the pediatrician has concerns or the child has screened as having a high likelihood to have autism. Then, it looks at what birth-to-three referrals look like and the diagnostic evaluation process, what feedback sessions feel like and we have a couple of parent interviews discussing their perspectives through these processes. And we’re starting to move into what happens after diagnosis. The goal is to provide parents with information that is easy to understand and specifically tailored to young children.”

Podcast episodes also provide parenting mindfulness activities and cover common myths and questions about autism and highlights two more great resources for families and birth-to-three providers. The My Autism Spectrum Disorder (ASD) Journey Guided Planner helps families plan their first caregiving steps and tasks as they adjust to their new role. This guided planner allows families time to reflect and create a plan that is personalized and specific to their situation. It also helps families navigate the complex feelings that accompany a new diagnosis.

The other resource highlighted by the podcast is the Autism Screening and Evaluation Decision Aid Booklet, which is a decision support tool for families and birth-to-three intervention providers and helps families and their care teams discuss next steps for their child who has recently been diagnosed with autism. The OTAI Podcast can be found an all podcast platforms, such as Apple Podcasts, Spotify, Google Podcasts and Stitcher.

“It’s hard to overstate how much we have learned over the last 40 years about autism and how to support caregivers and families in the first years of life,” said director of the UW Autism Center Annette Estes. “But now we are facing an even greater challenge – how to get this information out to the community and how to ensure the high-quality services that reflect everything we have learned over the last 40 years are available to every family, regardless of where they live or their ability to pay or the language they speak at home.”