Today, we present you with Dr. Megan York Roberts, associate professor at Northwestern University. Dr. Megan York Roberts’ project, Reducing Time to Autism Diagnosis for Toddlers Enrolled in Early Intervention, tests a virtual process for diagnosing autism spectrum disorder to support earlier access to autism-specific intervention services in Illinois.
*Responses have been edited for brevity and clarity.
National Center for Special Education Research (NCSER): How would you describe your research project in a sentence?
Dr. Megan York Roberts: This research project aims to test a new autism diagnostic pathway that will ultimately reduce time to diagnosis.
NCSER: What was the need that inspired you to conduct this research?
Dr. Megan York Roberts: As an intervention researcher, I was frustrated by the barriers families face in accessing timely specialized intervention services (which requires an autism diagnosis). For example, families often have to navigate an entirely new system to access an autism evaluation in Illinois. First, they have to find where they can get an evaluation; then they have to wait for several months for the appointment, and then they must figure out how to access additional services. This lift is just too much for caregivers, especially those who aren’t familiar with the early intervention (EI) or medical system and what services may be available to them. Each of these barriers increases the length of time a child and their family go without services and supports.
NCSER: What outcomes do you expect to change with this research?
Dr. Megan York Roberts: I hope that children will be able to receive an autism evaluation sooner, which will lead to quicker access to specialized intervention services. An autism diagnosis is often referred to as the “golden ticket” to additional specialized services. I want all families who need this ticket to get it as soon as they want it. I also want families to have a positive experience with the diagnostic process. I want them to feel heard and I want them to feel like we have seen their whole child. At the end of this grant, I want to have a new autism diagnostic pathway that: (a) allows families to receive a timely, culturally responsive, and neurodiversity-affirming evaluation, and (b) includes open-access training materials to support EI clinicians’ widespread implementation of this diagnostic approach.
NCSER: What inspired you to do research in early intervention?
Dr. Megan York Roberts: I was an early-intervention clinician in upstate New York for several years and realized that the period from birth to three years of age is also one of the most important developmental periods; there is so much potential to impact a child’s long-term outcomes when intervention is implemented during this period of heighted neuroplasticity.
NCSER: Why is this particular research project important to you?
Dr. Megan York Roberts: This is the first research project that will have an immediate, real-world impact for 1,200 children in Illinois who will be able to access an autism diagnostic evaluation sooner, while simultaneously providing the necessary data to potentially change how we diagnose autism across the U.S. and in the future.
NCSER: How do you think this grant will impact early intervention?
Dr. Megan York Roberts: I hope that the data from this grant will lead to a new autism diagnostic pathway that exists within EI systems, as opposed to the current medical model. Right now, the primary option for toddlers enrolled in EI in Illinois is to receive an autism evaluation by a physician. This is problematic because there are very few physicians who provide these evaluations as part of the EI medical diagnostic process. If EI clinicians (with appropriate training) were allowed to diagnose autism, this would drastically increase the number of evaluation slots, thereby reducing the time to diagnosis.
NCSER: How will this project address challenges related to the pandemic?
Dr. Megan York Roberts: The pandemic drastically increased the waitlists for autism diagnostic evaluations; in some cases, the wait is 24 months. I hope that this project drastically reduces or eliminates this wait for children enrolled in EI in Illinois.
NCSER: What are some of the biggest challenges in early intervention research today?
Dr. Megan York Roberts: I think there are two big challenges. First, we struggle to recruit study samples that represent all children enrolled in early intervention. Second, implementation in real-world settings continues to be challenging. For example, despite decades of research supporting the use of caregiver coaching, most caregivers do not receive coaching.
NCSER: What’s one thing you wish more people knew about children and youth with or at risk for disabilities?
Dr. Megan York Roberts: Early intervention should not be about “fixing” a child, but rather thinking about how we can change the context such that the child is better able to learn, develop, and thrive.
“Early intervention should not be about ‘fixing’ a child, but rather thinking about how we can change the context such that the child is better able to learn, develop, and thrive.”
NCSER: What are some of the most exciting news/innovations/stories that give you hope for the future of early intervention research?
Dr. Megan York Roberts: When we applied for this grant, we posted about our need for letters of support on Instagram. We received hundreds of responses from clinicians saying that they were so excited for the project and that they would be willing to participate. This gives me such hope that all of us (caregivers, clinicians, researchers) can work together to solve really important problems.
NCSER: What are some of the future goals for you and your team?
Dr. Megan York Roberts: We want to do more community-based participatory work in which we engage stakeholders (caregivers, EI clinicians) in all parts of the research process, from designing the study to interpreting the results.
Thank you for reading our conversation with Dr. Megan York Roberts! Check back in next week!