Robin Lynn Treptow, PhD.
Ben’s parents are upset about Ben’s perinatal diagnosis of Down syndrome. Their pediatrician tells them they are lucky to have a child who will be happy, be social, and never leave them.
Misconceptions abound about individuals with trisomy 21 (T21) and all patients with developmental and mental health conditions. This article aims to distinguish myths from facts regarding T21 and help you to counteract implicit biases that limit opportunities for our patients.
Myths vs facts about T21
Here are some common erroneous beliefs about T21 as well as some facts:
The nature of implicit bias
Implicit bias refers to unconscious attitudes and stereotypes, often reflecting societal messaging. For T21, biases:
Health care professionals may hold lower expectations, leading to disparities in care and opportunities (Krell et al, 2023). Parents often hold lower expectations for their child’s educational attainment and employment prospects than parents of typically developing children (de Graaf G et al, Am J Med Genet A 2019;179(2):161–176).
Ben’s infant intervention team members opine that Ben will be a “great guy to have around” but tell his parents not to expect much from him. His parents come to you for a second opinion.
Countering implicit bias in clinical practice
Counteracting implicit bias in clinical practice requires a multifaceted approach that includes reflective practice, objective measurement tools, and structured approaches to intervention.
Reflective practice
Clinicians who take the time to reflect on their own assumptions can address their implicit biases (Diaz BA et al, Adv Health Sci Educ Theory Pract 2023;28(4):1191–1204; Sukhera J et al, Acad Med 2018; 93(1):35–40). The goal is to do what is ethically right for a child with T21.
Set aside facial traits and genetics. What can the child do? What would be one step further? Help the child express what they want in their life. Help them plan how to reach their goals. When you and the parents join your patient in their vision, the likelihood of achievement is far better.
Actively reduce implicit bias using reflective questions, and advise parents and caregivers to think through these same questions (Heffron MC et al, Infant Young Child 2005;18(4):323–336):
Objective measurement tools
Objective measurement tools can reduce implicit bias and help us make informed decisions about how to help the child and include them in scholastic and community activities (VanPuymbrouck L et al, Rehabil Psychol 2020;65(2):101–112).
Obtain reports from multiple sources:
Reports should cover diverse domains:
Journal entries add rich daily life examples, documenting gains and testifying against views of limited potential.
Structured approaches to intervention
While there is a range of ability for all children, we need to ensure that every child reaches their full potential. Advocate for evidence-based therapies and educational programs, including speech, occupational, and/or physical therapies, plus academic and social supports (Treptow RL, International Journal of Health, Wellness and Society 2017;7(3):33–42). Ideally, such experiences occur alongside age-normed peers in settings that are characterized by acceptance and kindness.
Help the child gain competence by providing opportunities at home and school to see others perform a task. Then have the child practice it themselves while adults are present. Show confidence that the child can do the task. These positive experiences strengthen the child’s self-esteem, resilience, and willingness to learn additional skills (Treptow RL, Infant Mental Health J 2017;38(2):318–320). Create clear goals and orderly interventions that permit children (and families) to navigate their lives. Help parents and teachers believe in the child’s potential to make developmental gains.
Start with a routine daily task (eg, clearing their plate from the table or feeding the family dog):
For complex tasks (eg, unloading the dishwasher or taking the dog for a walk), model each step, then give the child chances to practice putting the steps together independently.
Here are additional resources:
Ben’s parents include Ben with typically developing children. Ben is reading and writing by second grade and plays peewee hockey. As a teenager, Ben attends digital art classes, plays basketball with friends, and has an internship at a video game company. His girlfriend is pursuing accounting, and together they enjoy picnics with poetry.
Carlat Verdict
Implicit bias is ubiquitous across the range of developmental challenges and mental health conditions. Clinicians need to proactively explore implicit biases to combat the culture of lowered expectations and promote maximum inclusion for patients with T21 and other developmental conditions. For more on the basics of T21, see feature article in this issue.
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