Families across the California Central Valley have witnessed the rise in diagnosed cases of autism. Autism spectrum disorder (ASD) is a neuro-developmental disability that impacts life, often present from early childhood through the lifespan. Autism is so prevalent today that everyone has someone in their direct family who is affected by autism, or they know someone with autism. Today, ASD is often referred to as one of the fastest-growing developmental disorders in the U.S
While autism impacts a child's and parents' lives, we have an opportunity to challenge the status quo and improve the lives of these families. Over the past 12 months, Legacy Health Endowment has been working with Stanford professor Dr. Nirav R. Shah, MD, and affiliated scholar Dr. Venus Wong, Ph.D., to better understand the obstacles families face in obtaining needed care for a child determined to be on the autism spectrum in Merced and Stanislaus Counties.
The prevalence rate of autism spectrum disorder has been increasing rapidly. In the 2000s, 1 in 150 children was identified with autism. Twenty years later, in the 2020s, this number has risen to 1 in 44 children. Today, it is estimated that more than 1.6 million children in the United States live with some form of autism.
Autism does not announce itself in the delivery room. Instead, as the child ages, seeds of doubt begin to grow until test results arrive and care needs increase until the right treatments come into effect. Unfortunately, evidence has shown that systems of autism care are fragmented, and children with ASD are four times more likely to experience unmet health care needs than children without disabilities. Some commonly reported challenges to include delayed diagnosis, insufficient care coordination, long waitlists for therapy, disparities in accessing school-based support via an Individualized Education Program, and a lack of support for transition-age adolescents and adults.
Accessibility to quality autism care differs based on skin color, spoken language, and family income. It is known that many families and people on the spectrum experience diagnostic delays. The average age of diagnosis remains between age 4 and 7 years old. However, the delay in diagnosis is more prominent among children from lower-income, ethnic/racial minority, and rural backgrounds.
There are currently no pharmacological interventions or medical procedures to treat the core symptoms of autism. However, comorbidities found among individuals on the spectrum may require gastroenterologists, neurologists, psychiatrists, and related medications. Many reports detail the high rates of psychotropic medication use for individuals on the spectrum, with up to 27% of children and adolescents taking more than one psychotropic medication. Further, the use of psychotropic medication tends to increase with age.
The impacts of autism extend beyond affected individuals to their family members. The pandemic has made many parents become their children's 24/7 special educators, therapists, and caretakers. However, caring for individuals on the spectrum can be challenging and adversely impacts family caregivers, especially those with inadequate support systems. Even before the pandemic, parents of children with autism reported that they experience have stress, anxiety, and/or depression. As a result, more focused parent-mediated interventions, and parent-focused support (e.g., caregiver groups) are getting into the mainstream.
Across the California Central Valley, like many places in America, parents seeking services to aid their child often are confused by a myriad of treatment options. The Department of Developmental Services contracts with twenty-one nonprofit regional centers to offer centralized support for individuals and families in California. The Greater Turlock-Modesto area is part of the Valley Mountain Regional Center (VMRC).
The VMRC leadership team and senior staff are dedicated, knowledgeable professionals who are 110% committed to helping every child and their family. However, because most VMRC's services are outsourced to external service vendors, VMRC often has limited reach
to ensure that the vendors meet specific care outcomes. In addition, there are currently no widely adopted, validated performance metrics to evaluate and monitor the care outcomes vendor services at scale—the result: few actionable insights into the quality and cost-effectiveness of services purchased.
The lack of actionable data is a significant problem and, at the same time, an opportunity to change the status quo.
Legacy Health Endowment's goal is to build an evaluation tool to help improve the work of all autism providers in Stanislaus and Merced Counties and help parents understand how to get the best possible care for their children. We can use our two counties as a model for California and the nation.
As a society, we are long overdue in helping parents find the best care and support for a child on the autism spectrum. The need is great, and the time for action is now.
— Jeffrey Lewis is President and CEO of Legacy Health Endowment and the EMC Health Foundation in Turlock, Ca (firstname.lastname@example.org). The words expressed are his own.