Reducing the Wait for Autism Diagnoses

The number of children diagnosed as autistic has risen drastically over the past 50 years. One in 5,000 children was diagnosed as autistic in 1975. Today, it’s 1 in 36. At the same time, our understanding of what autism is and how to best support autistic children’s development has dramatically improved too. We know that autistic children who achieve the best outcomes later in life are those who are identified early and receive high-quality therapy during their first three years of life, when approximately 80% of brain development occurs. 

Yet despite continued advances in early detection — and the fact that autism can be reliably diagnosed by age 2 — the average age of diagnosis is 4 years old, one year past the critical period of neuroplasticity. And the pathway for medical diagnoses of autism remains inefficient and ineffective, riddled with logistical hurdles that have not changed in five decades. 

Fifty years ago, children were diagnosed by a medical specialist, and the medical system could support these infrequent referrals. However, the drastic increase in prevalence has created a bottleneck in the system. There are few diagnosticians, and these limited diagnostic resources are poorly distributed. 

Children must have an official diagnosis from a clinical psychologist or physician to have health insurance cover the more intensive and specialized interventions they need. 

Improving access to such critical interventions requires an innovative overhaul of the current system. Presently, in Illinois, when a pediatrician or caregiver suspects that a young child may be autistic, the child is referred to both the publicly funded Illinois Early Intervention (EI) System and a specialist diagnostic center. However, many of those centers are overwhelmed with cases and have waitlists that are often over a year long. So it is not surprising that only 6% of autistic toddlers will receive autism-specific services before they enter kindergarten. 

But the EI system includes more than 4,000 speech-language pathologists (SLPs), most of whom have experience working with autistic children. In fact, SLPs often serve on diagnostic teams. This begs the question: If a pediatrician with limited or no training in autism is “qualified” to diagnose autism, why can’t the same be true for SLPs who have significantly more training and experience with autistic children? 

We hope to answer that question with our four-year study, the Reduce the Wait Project. With funding from the Institute of Education Sciences, we are providing virtual autism diagnostic evaluations to more than 1,000 toddlers across Illinois — focusing on families from underserved areas — with the goal of creating a diagnostic pathway that is more efficient than the current system. Our initial results suggest that SLPs with minimal training in autism diagnostic tools are in fact just as accurate as specialists. Additionally, providing virtual at-home evaluations expands access for families who may not have the means to travel to offices. 

We hope this study will catalyze a change in policy so that no autistic child must wait to receive a diagnosis — or the care they need. 

Megan York Roberts, a licensed speech-language pathologist and professor in the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders, leads the Early Intervention Research Group in Northwestern’s School of Communication.