What supports do young people with intellectual and developmental disabilities need?
Family matters most for emotional wellbeing
Authors
What helps children thrive emotionally? For neurotypical children, friendships and supportive relationships at home work together to promote psychological wellbeing. But how do these factors shape the emotional wellbeing of children and adolescents diagnosed with intellectual and developmental disabilities? Researchers often struggle to include these young people in their studies, and there are few accessible measurement tools that focus on their unique experiences. As a result, families and practitioners are frequently left without clear, evidence-based guidance.
“We wanted to know which supports matter most for these young people’s wellbeing.”
To find out how family and friendships impact emotional wellbeing, we surveyed the parents of 43 young people aged 5 to 21 years old twice during the early months of the COVID-19 pandemic. Approximately 42% of the young people had been diagnosed with Down Syndrome, 33% with autism spectrum disorder, 12% with a genetic disorder, and about 7% with cerebral palsy. Parents of the remaining group chose not to disclose their child’s diagnosis. We wanted to know which supports matter most for these young people’s wellbeing.
Family comes first for emotional wellbeing
At both time points in our study, the home environment stood out as the most important predictor of emotional wellbeing. Children who had positive relationships with their parents and fewer conflicts at home had higher levels of emotional wellbeing, even when friendships and the ability to get along with peers were taken into account. By contrast, relationships with peers did not predict emotional wellbeing at either time point.
Although friendships are often considered central to emotional wellbeing, especially during adolescence, our findings show that this may not be as true for children with intellectual and developmental disabilities.
“At both time points in our study, the home environment stood out as the most important predictor of emotional wellbeing.”
What emotional wellbeing means for those with intellectual and developmental disabilities
Emotional wellbeing is more than simply feeling happy. It is about showing interest in life, experiencing positive emotions, managing difficult feelings, and having a general sense of satisfaction and contentment. Emotional wellbeing is closely tied to quality of life, mental health, and long-term development for all children.
But emotional wellbeing is especially important for young people with intellectual and developmental disabilities, as many experience challenges with emotional regulation, communication, and social interaction. This can make everyday experiences more stressful for the approximately 1 in 6 children with a developmental disability in the US.
Why family might matter more than friends
Young people with intellectual and developmental disabilities often spend more time at home than their peers and rely heavily on their parents for emotional regulation, communication, and daily support. During the pandemic, their reliance on caregivers increased as schools, therapies, and community programs shut down.
In addition, many of these young people face barriers to forming and maintaining peer relationships owing to communication difficulties, social anxiety, or differences in social motivation. This was likely even more challenging during the pandemic, at a time when young people saw their friends less often. For young people with these disabilities, friendships may look different or be less emotionally important than for neurotypical young people.
How practitioners can support children with intellectual and developmental disabilities
Supporting families is a powerful way to improve emotional wellbeing for young people with intellectual and developmental disabilities. Services might:
- Focus on strengthening parent–child relationships
- Embed emotional learning activities and interventions into everyday family routines
- Help families use mealtimes and playtime as teaching opportunities for developing social and emotional skills
- Reduce caregiver burdens rather than adding more demands
Building on existing family routines and strengths is more likely to lead to lasting benefits than formal services alone. These approaches are often easier for caregivers and could ultimately improve young people’s lives.
Authors