Joey* and Andrew* are, in so many ways, quite similar. These 3-year-olds are rambunctious, never want to take a nap and don’t like peas. Both also share traits commonly associated Autism Spectrum Disorder (ASD). The parents of these two toddlers are good people who work hard to nurture and care for their child, make all the sacrifices needed to ensure their lives are stable and have even started to make plans for their futures. They may even know that cases of ASD are on the rise in this country, with numbers expected to surge by 10–17 percent annually.
And like any parent concerned that their child may have a developmental disability, Joey's and Andrew's parents sought a proper diagnosis from their pediatrician.
Though these two youngsters are similar in so many ways, including in their symptoms, their individual diagnoses aren’t. How is this possible? What might be the causes of this discrepancy?
Let’s start with the fact that Joey is African American, while Andrew is Caucasian.
Even though research conclusively shows that ASD does not discriminate by race, ethnicity or socioeconomic status, numerous studies reveal significant disparities in ASD diagnoses: Through a delay in diagnosis, or an inaccurate diagnosis, children of color tend to fall short compared to white children.
Everyone seems to know that early and accurate detection leads to better outcomes, so these discrepancies are unsettling. When a diagnosis is incorrect, so much can go wrong. Medication errors can lead to devastating long-term developmental, behavioral and health issues.
Without an early or accurate diagnosis, children and their parents aren’t able to access specialized services, crucial and life-altering interventions, and educational resources that would otherwise be readily available to them.
So, despite what is common knowledge, about early intervention, what gives? Why do these discrepancies exist?
A small, growing body of research strongly suggests that cognitive bias may be a root cause of these disparities.
What is cognitive bias?
Cognitive bias is defined as an error in judgment and decision-making. Various external factors can lead to cognitive bias such as stress, time constraints, educational background and limitations in the ability to process unfamiliar or complex information. Anyone can be a casualty of cognitive bias, including dedicated, passionate and competent health care practitioners such as pediatricians and family physicians.
Research as to why there is a prevalence of delayed or improper diagnosis within communities of color is still a work in progress and is, currently, inconclusive. Research does show, unequivocally, that significant discrepancies do occur, however. While access to care is a common belief, studies show it is, overall, not a leading factor, even when control studies are taken into account.
Research conducted by the Institute of Medicine and studies by Dr. David Mandell highlight four theories as to potential reasons why discrepancies occur. The first is a provider’s misinterpretation of symptoms resulting in misdiagnosis. This is partly attributed to the fact that symptoms from one diagnosis to the next overlap. Studies also show that providers tend to more heavily diagnosis certain races with certain disorders.
The second theory, as mentioned earlier, which has been heavily studied by the Institute of Medicine and Alexander Green and colleagues, the Implicit Association Test, suggests cognitive bias may play a role in the discrepancy. The third is communication and interpersonal relationships that may be impacted by language and cultural barriers. The fourth regards training. Based on discrepancies seen in other areas of medicine, contributing factors may be related to limitations in medical school curricula and continuing education. Minimal emphasis in course work around these areas may contribute to a more restricted capacity to differentiate between ASD and Attention Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder.
Tips For Parents
Regardless of the reasons, parents must trust their instincts and put aside any feelings of intimidation. They should be prepared to persist and advocate for their child and question the diagnoses they are receiving from their pediatrician or family doctor. These professionals are typically on the front line in the referral process and thus have a life-altering influence on the care your child will receive. Parents should be aware that discrepancies exist in the first place and should be prepared to back up their stand with a little research (the Internet is a valuable resource to find relevant studies) to inform their intuitions.
No one knows your child better than you. Your personal experience and interactions with them, coupled with some basic awareness of disorder symptoms, put you in a key position to be a vocal and persistent advocate for your child.
Though it may come with initial hesitance, parents must grow into the type of self-confidence that allows them to ask their doctor to offer a thorough mental-health examination to challenge any diagnosis being questioned. Or, ask them for a referral to someone who can offer a more comprehensive mental health evaluation. The Affordable Care Act and Health Care Reform, legislation that ensured mental-health parity and increased access to quality health care are a reality, are exceptional resources parents should maximize to help their child.
Despite the fact that studies show cognitive bias exists and that its effects may significantly affect a child’s life, parents should understand that such diagnoses are not likely intentional. The most important take away is that it is likely based on a variety of circumstances such as cognitive bias, cultural differences and limitations in medical school curricula. Someone once said that knowledge is power. For parents of a child with ASD (or other developmental disabilities), a critical first step is to understand that bias does exist and that it is a real hurdle.
All parents should endeavor to become active participants in their child’s health-care decisions, regardless of the health issue. The unsettling discrepancies that exist around ASD diagnoses, however, must necessitate that parents must become more educated, vocal and energetic health care advocates for their child.
*Names have been changed to protect privacy.