What I’m about to tell you frustrates me as a doctor and angers me as a human being.
A mother recently brought her 10-year-old African American son to my multidisciplinary diagnostic center for autism, a neurodevelopmental disorder affecting one’s communication, social skills, and behavior. This was not her first stop on the medical carrousel: She first had him evaluated at ages two and three for speech issues then again at four years of age for behavior issues, a pattern that repeated several more times before he turned nine. Finally, a pediatrician referred her son for an autism evaluation. After six months on a waiting list, at 10 years old, the boy was diagnosed with autism and intellectual disability.
That took far too long and cost the boy eight critical years of services and support.
Ideally, the path to an autism diagnosis and interventions is short and direct, usually including the primary care provider validating and addressing parental concerns, routine autism screening, and timely referrals and access to diagnostic centers and autism-specific interventions. The Autism Alliance of Michigan recommends that children be diagnosed by age two.
But for too many children in our state, especially children of color and lower socioeconomic circumstances, the path is slow and indirect – plagued with misdirected detours such as dismissed parental concern and misdiagnosis, provider and parent bias and stigma, and long wait times to access diagnostic centers and interventions. There are many reasons for this disparity of care including patient and provider bias, as well as healthy system bureaucracies.
At the patient level, the extent to which there is awareness of autism-specific symptoms is different among various communities. Some cultures may recognize a child as being “different”, but parents do not seek a medical diagnosis or treatment. Cultural norms surrounding discussions of autism within some communities may impact parent’s knowledge about the disorder. Additionally, parents of various cultural backgrounds may also have expectations or explanations of a child’s behavior which may also affect whether they bring up autism-specific concerns to their provider.
On the provider level, research has demonstrated disparities in autism screening accuracy based on race, socioeconomic status and language. It is the provider’s unconscious bias that influences decision making as to the type of referral, if any, made for further assessment. Provider unconscious bias influences what is communicated to the patient’s parent or guardian resulting in unintentional divergent paths of treatment and decision making. Unconscious bias also influences how a provider communicates to parents, which directly affects parental understanding of the severity of their child’s medical needs and their compliance with recommendation.
Lastly, health system factors contribute to the health care disparities in autism diagnosis. Recent research demonstrates African American children are diagnosed with autism more than three years after parent’s express concerns about their development, many months later than their white peers. One study cites found significant wait times to see a doctor and that nearly half of the children were evaluated by multiple providers before being diagnosed, with 14% seen by at least six providers before finally receiving an ASD diagnosis.
There are signs of slow progress. The Centers for Disease Control and Prevention just announced that among all U.S. 8-year-olds, 1 in 36 had autism in 2020, up from 1 in 44 two years prior. But the rates rose faster for children of color than for white kids, which suggests improved screens and autism services for all kids, and to increased awareness and advocacy for Black and Hispanic families.
The first step toward solving a problem is acknowledging it: Racial disparities in autism care and services is a fact, and one we can’t hide from during Autism Awareness Month.
Every person navigates the world under the influence of their unconscious biases. This includes those who provide health care. We know our biases can impact how we perceive or treat the patients and families we serve. For example, I often wonder if a provider’s unconscious bias influenced their delayed response to the mother’s language and behavioral concerns of the 10-year-old now in my care.
Health care providers and the systems that support families must continually work to identify, evaluate, and address their own unconscious bias to avoid unintentional discrimination and poor decision making.
Parents should be treated like the powerful partners they are. Their opinions and experiences with their child should continuously be sought and unbiasedly inform diagnosis and treatment decisions that are made.
Politicians and other public policy leaders must aggressively work to increase capacity of all providers (medical providers, therapist, early interventionist, and parent support programs), as well as high-quality diagnostic and autism-specific intervention services especially in underserved regions of our state.
These initial steps protect and promote the basic civil right of equal access to quality health care for all children.
Dr. Tisa Johnson-Hooper is Medical Director for the Center for Autism and Developmental Disabilities at Henry Ford Health. She serves as a clinical associate professor at Wayne State University and Michigan State University, and as a board member for the Autism Alliance of Michigan.