By Emily Leclerc | Waisman Science Writer
At a Glance:
- Individuals who have adverse childhood experiences (ACEs), such as maltreatment, domestic violence, abandonment, or significant loss, have been shown to have more mental health symptoms, behavioral symptoms, and significant life events later in life. Research hasn’t studied if this remains true for individuals with Down syndrome.
- Waisman researchers found that individuals with Down syndrome experience ACEs at similar rates as the general population, that those who experienced more ACEs did report more mental health symptoms and significant life events, and those who experienced more ACEs also struggled more when dealing with change in their life.
- This new study’s findings could help those working with individuals with Down syndrome who have a history of ACEs build more suitable and robust support systems that consider their past and recognize that they may need more support around conflict and life changes.
A new Waisman study found that adverse childhood experiences (ACEs)—such as abuse, neglect, or exposure to household challenges—can have lasting effects on adults with Down syndrome, including their mental health and ability to cope with life changes. While ACES are known to impact the general population, this research is among the first to show similar—and in some cases heightened—effects in individuals with Down syndrome.
“In this study, adults with Down syndrome experienced ACEs at pretty similar level to the general population and the more they experience, the more likely they are to experience mental health issues,” says Emily Hickey, PhD, scientist in the Waisman Center’s University Center for Excellence in Developmental Disabilities (UCEDD). “We found the same type of cascading and compounding effect of stress in this group of people just like in the general population.”
Down syndrome is a genetic condition caused by a third extra copy of the 21st chromosome and is the most common genetic cause of intellectual disability. 1 in every 640 children born in the U.S. have Down syndrome. Due to diagnostic overshadowing, where mental health concerns are often attributed to the genetic condition, the role of stressful life experiences are often overlooked for individuals with Down syndrome. “It is often assumed that if mental health problems occur they are driven by biology, “says Sigan Hartley, PhD, Waisman investigator, 100 Women Distinguished Chair in Human Ecology at UW-Madison, and senior author on the study. “It is a critical message that individuals with Down syndrome are not immune to stressful experiences and in many ways, they are likely more particularly vulnerable to these experiences.”
ACEs can be different forms of maltreatment or abuse; exposures to domestic violence, parental substance abuse, or criminal behavior; and bullying, divorce, abandonment or significant loss.
This study, which was published in the journal Research in Developmental Disabilities, analyzed data from a cohort of individuals with Down syndrome to better understand how often they experience ACEs, if those experiences influence mental health in adulthood, and whether or not experiencing ACEs impacts their response to stressful events in their lives.
52% of the adults with Down syndrome in the study were reported to have experienced at least one ACE. Their analysis showed that individuals who experienced more ACEs reported higher levels of mental health symptoms and were more likely to experience disruptive and stressful life events such as serious illness or hospitalization, loss of a loved one, job transitions, new roommates, interpersonal conflict, financial instability, or abuse as adults.
Hartley and Hickey also found that those who had experienced stressful things in childhood were also more likely to struggle when coping with disruptive or stressful events later in life.
These findings have important implications for care and support as well as the development of potential interventions. They highlight the need for trauma-informed approaches in schools and service settings, as well as individualized strategies to help adults with Down syndrome build coping skills for transitions and stress.
“A history of ACEs could be an important indicator that transitions and changes could be particularly difficult for someone,” says Hickey, who is the first author on the paper. “They might need more support, extra time spent on coping interventions, and more attention on working on how to healthily handle stress.”
Hickey and Hartley intend this research to help establish a baseline from which to branch more in-depth inquiries, such as looking at different specific ACES. This study only asked if a person had experienced an ACE and did not ask the participants to identify what kind of ACE. Determining which ACEs, if any, individuals with Down syndrome may be more vulnerable to can help shape future prevention strategies.
They also want to investigate if there is a connection between ACEs, significant life events, and cognitive decline. Research in the general population shows that those who experience more stressful childhood life experiences are at greater risk for aging-related cognitive decline and dementia later in life. Individuals with Down syndrome are at an increased risk for Alzheimer’s disease and dementia – more than 90% of individuals with Down syndrome will develop Alzheimer’s disease in their lifetime, however, there is wide variability in the age of onset. Understanding the implications of early stressful childhood events on brain health later in life could be crucial for developing preventions to delay cognitive decline.
“One of the potential pathways affected by stressful childhood experiences that has implications for later brain health is the inflammatory system,” says Hartley. “This is a pathway we are actively researching now.”
This study is the first step toward filling a critical gap in knowledge and improving quality of life for individuals with Down syndrome. Hickey and Hartley plan to continue to investigating how early adversity shapes health outcomes and what interventions can make the biggest difference.
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