How To Reduce the Age of Autism Diagnosis?

This is a digital conversation between Wayfinder and Ascend Behavior Partners. Here’s 5 approaches Ascend is taking to break down barriers to care, and how you can help improve outcomes for children with ASD.

As new research continues to improve our understanding of autism spectrum disorder (ASD), so does our ability to diagnose the disorder at an early age. A multidisciplinary team of certified health professionals — like developmental-behavioral pediatricians, speech-language pathologists, and psychologists — can now effectively diagnose ASD at the age of 18 months. This is an incredible achievement, given early intervention services like behavior therapy and speech therapy dramatically improves long-term outcomes for children with ASD. So, despite healthcare providers’ ability to make early diagnoses, why is the average age of ASD diagnosis in the US four years old?

Ascend Behavior Partners, a behavior therapy and developmental evaluation provider, is working to reduce the age of ASD diagnosis. We sat down with their team to learn how they’re tackling this important problem.

What key barriers prevent children from getting diagnosed at an earlier age?

Unfortunately, a variety of barriers exist to getting children diagnosed at an earlier age, and we have to address each of them to be successful.

Limited number of diagnostic providers

Diagnosing autism requires highly-trained specialists — like developmental pediatricians and child psychologists — who evaluate a child’s cognitive, developmental and behavioral domains. Unfortunately, there’s a shortage of providers who specialize in ASD diagnosis (including here in Colorado). Unless families can pay steep out-of-pocket costs, waitlists for families using insurance or Medicaid can be months - even years - long. What’s more, long waitlists have a devastating secondary effect: they signal to families that “it’s okay to wait.”

Irregular developmental screenings

The Modified Checklist for Autism in Toddlers (M-CHAT) is a screening tool that helps determine whether children between 16 and 30 months old could benefit from additional developmental evaluations. It’s considered a best practice for pediatricians to administer this screening at 18- and 24-month wellness visits, but we’ve found that doesn’t always happen.

Challenging referral & care coordination processes

The referral and care coordination process can involve a variety of providers (eg pediatricians, early intervention services, specialists, case managers, etc.). Hand-offs are hard for families and can result in delays in the evaluation process.

“Wait and see”

The potential of receiving an ASD diagnosis can be scary. Families might “wait and see”, hoping that their child outgrows their delays in development. If the child does indeed have ASD, receiving a formal diagnosis will unlock a suite of services that improve long-term outcomes and quality of life.

Cultural and socioeconomic barriers

A new study in Autism Research found that as many as one in four children with documented signs of ASD are undiagnosed. What’s more, the study found the undiagnosed population is more likely to be non-white (black non-Hispanic, other non-Hispanic, or Hispanic) than white. Cultural and socioeconomic barriers — like a lack of culturally competent screening tools, fewer providers who speak Spanish, and insufficient options for uninsured families — result in diagnostic inequities.

How is Ascend approaching this problem?

We’ve worked extensively with community partners over the past three years to address this systemic problem. 

Focused age range

We specialize in evaluations to children ages 18-48 months, focusing on the most critical developmental time in a child’s life.

Innovation in diagnostic coordination

We’re innovating in areas like our “Embedded Psychologist” program: diagnosing specialists co-locate in pediatric practices to speed the referral process and make it easy for families to get their questions answered.

Expand access to care

We accept Medicaid, CHIP and Private insurance to help families of all income levels. We also have spanish-speaking care navigators and access to language translation services.

Play nice in the sandbox

We collaborate with a wide variety of early childhood providers (eg Pediatricians, Community Centered Boards, Early Intervention Colorado, Child Find, etc.) to improve referral and care coordination and educate the community on the importance of early screening and testing. We’re all in this together!

Care navigation & mental health support

We have care navigators and mental health professionals who support parents during the process and after receiving a diagnosis: this helps them understand what they’re experiencing as parents and reduces barriers-to-testing.

What can the community do to support this mission?

Reducing the age of autism diagnosis is a community-wide effort and requires collaboration among individuals, providers, families, health systems, and community organizations. Here are four things you can do today to help.

Reach out

If you know an autistic or a family living with autism: reach out. Tell them you see them. Get to know them and understand their journey. 

Communicate acceptance

Help eliminate social stigma and accept neurodiversity by accepting autism in your community. Participate in community events like autism walks, volunteer your time and treasure with nonprofits, and choose businesses started by autistics or that employ autistics.

Ask your pediatrician

If you’re the parent of a neurotypical child, ask your pediatrician if they use universal screening tools like the M-CHAT to screen for autism concerns.

Advocate

Stay informed of legislation that improves health care access and outcomes for autistics and families living with autism. Communicate your support to your local elected officials.

(All photos used in compliance with HIPAA requirements and privacy standards)