May 17, 2021

Haring Center Collaboration Reduces Delays in Autism Diagnosis and Treatment

“We know that signs of autism emerge reliably between 18 months and two years,” says Ashley Penney (PhD ‘16), BCBA and research scientist at the UW Autism Center. “But most kids aren’t diagnosed until they’re about four and a half years old.”

Annette Estes (PhD ‘98), who directs the Autism Center, explains that the gap is even greater for children who are Black, Hispanic, eligible for Medicaid or living in rural areas.

“A large number of kids on the autism spectrum in the United States never get autism-specific intervention,” says Estes. “That is just not acceptable.”

With these disparities in mind, the Haring Center joined forces with the Autism Center in 2018 to collaborate on a solution. The On-Time Autism Intervention (OTAI) project now works to increase access to on-time autism intervention services, with a gift from the Seattle Foundation.

“Intervention should be on-time,” explains Haring Center Director Ilene Schwartz, who co-directs OTAI with Estes. “We need to meet children and families where they are and provide them with the services at times and in formats that work for them.”

The project engages community-based practitioners who offer diagnostic and intervention services for children. Experts from the Haring Center and the Autism Center are developing a practice framework for these community partners within King County, with hopes of expanding it in the future. The project also engages UW students from a variety of disciplines, including special education, public health, social work and psychology.

Schwartz explains that the collaborative aspect of OTAI allows the team to use different lenses to view the issues they are trying to address.

“In a meeting, we can go from a detailed description of a child’s assessment to a national view of issues and trends in assessment because of our team’s breadth and depth,” she says.

OTAI focuses on three areas: diagnosis, navigation and treatment. Jessica Greenson, director of clinical services at the Autism Center, leads the project’s on-time diagnosis work.

Greenson works with King County’s birth-to-three providers to improve identification of children who may need an autism diagnosis. She explains there are a number of barriers for children in need of a diagnosis.

“Diagnostic centers often have long waitlists,” says Greenson. “For many families, English is their second language. There are financial barriers in terms of driving to a diagnostic center, plus a lot of diagnostic centers don’t take Medicaid. Also, there are cultural pieces – for some families, there is a huge stigma around the idea of disability.”

“I work with the birth-to-three providers to develop systems for screening kids and for what to do when those screens come out positive – how to have conversations with families and help them find a place to get a diagnosis,” she says.

These families are where OTAI’s navigation arm comes in.

“One of the questions we’ve asked from the beginning is: ‘What should every child and their family have in that first year from the initial signs of autism up through diagnosis and intervention?’” says Penney.

Penney leads monthly online groups for parents of children who are waiting to get a diagnosis or who have recently received one. She reports some of the stories she hears from parents in this position suggest not enough support and sometimes dismissal of their concerns.

“After parents get a diagnosis for their child, there are a lot of different emotions,” says Adriana Luna, a doctoral student at the UW College of Education and Haring Center fellow. “Sometimes they are left without any support at all.”

Luna joined the OTAI team to help facilitate the parent groups and make them more accessible by hosting groups for Spanish-speaking parents. For some parents, it is the first time someone is speaking to them in their first language about their child’s diagnosis.

“We can’t forget to bring in the parents alongside other professionals,” stresses Luna. “We can understand what parents need from professionals so that we work as a unit to help children succeed.”

According to Luna, parents in the online groups have formed friendships outside of the groups, an added benefit of the project. Penney and Greenson are also in the early stages of developing a podcast as a resource for families navigating their child’s autism signs, diagnosis and beyond.

As part of OTAI’s focus on autism treatment, Luna and Penney facilitate a Project ECHO network. The ECHO network brings together service providers who work with children three and under with autism, including Board Certified Behavior Analysts (BCBAs), Occupational Therapists, Speech-Language Pathologists, special educators and family resource coordinators. The meetings involve case studies and create a platform for different types of providers to learn from each other around working with young children who may or may not have their autism diagnosis yet.

“These two groups of providers – birth-to-three providers who are working with kids free of charge through Part C and BCBAs working with the same population – have different strengths,” says Penney. “Both strengths are really necessary, so our goal is to bring them together to increase meaningful collaboration.”

The diagnosis, navigation and treatment arms of OTAI fuse into the practice framework the team is developing for reaching children and families closer to when they first need services. Estes says the team plans to eventually expand the framework to other birth-to-three providers beyond King County to receive input and observe its use.

“I want every child, regardless of ability or background, to receive the services they and their family need to thrive quickly and in a manner that is respectful, responsive and effective,” says Schwartz, in describing her vision for the future.

Greenson explains that how early a child with autism can access autism-specific treatment changes the quality of their life and their families’ lives.

“We know what to do,” agrees Estes. “We know how to identify autism as soon as it emerges and we know all sorts of effective ways of supporting kids on the autism spectrum and their families. This is the time to bring it to all communities.”