Dr. Stephen Scherer (left) and Dr. Peter Szatmari have led an international project to discover the genetic architecture underlying autism susceptibility. Dr. Szatmari says it is common for these parents to experience the stigma attached to mental-health problems, addictions and developmental disabilities. Another contributor to parental stress arises as parents navigate the health-care system to get help for their child.Robert Teteruck
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Raising a child with a mental-health challenge, an addiction or a developmental disability can be very stressful. Feelings of stress can erupt at any moment; at the grocery store, family gatherings, meetings with teachers. Parents of these children are often faced with comments such as "There is something wrong with that kid," "You must be an awful parent to cause such lousy behaviour," and "Why can't you handle your own children?"
It is common for these parents to experience the stigma attached to mental-health problems, addictions and developmental disabilities. Another contributor to parental stress arises as parents navigate the health-care system to get help for their child.
A bewildering array of services exist, but access can often be near impossible. In addition, long wait lists mean a crisis may not receive timely attention.
The magnitude of the problem of family stress is not trivial. At any one time, about one in five children or adolescents will have a mental-health challenge. For some families, the experience can be short-lived or episodic and for others it can be long-term.
Regardless of duration, the impact on a family is real and will vary from situation to situation. Marriages can suffer. Siblings can feel neglected and act out. And family income can take a hit if a parent quits work to care for the child.
But there are some strategies that can help families cope and alleviate stress:
Removing the child from stressful situations isn't always the answer
Some children with autism spectrum disorder (ASD), or anxiety/depression, for example, find school a real source of distress. They may show disruptive behaviour and the teacher or principal may request that the parent take the child home. As a result it is often easier for everyone if the child stays home. While this may reduce everyone's stress levels in the short term, this avoidance strategy can have long-term consequences. The longer the child is out of school, for example, the more difficult it is to get them to go back. Some minor situations can be avoided, such as trips to the grocery store where you can easily remove the child from the situation. But other stressful situations need to be addressed.
Team work
Research has shown that the key to resilience is for parents to work together as a team and to add other members to the team depending on the needs of the child. Think of the parents as the team's co-captains. Other members of the team can include the family doctor, the teacher and principal, siblings, grandparents, uncles and aunts, family friends. Mental-health professionals such as social workers, nurses and occupational therapists or specialists like a pediatrician or psychiatrist can act as the "coach" of the team. But often parents have to get the team into shape to work together effectively.
Both parents and "coaches" need to construct a functional team that works well together, shows mutual respect for all members, shares decision-making based on the best available evidence, communicates well, and agrees upon an effective long-term treatment plan.
Ask for help
Lean on family, friends and support groups in times of need and use that time to reconnect with your partner, spend time with siblings and rejuvenate so that you have the strength needed to help your child. Support services should also aim to enhance overall family functioning, and promote adaptive parental coping strategies, in addition to providing interventions directed primarily to the child.
Be informed
What makes a good treatment plan? We have learned in our long-term follow-up study of children with ASD that parents need to be at the centre of the plan and that parental needs and stress levels are as important to monitor as the child's progress over time.
Parents should ask for and receive evidence-based information about the mental-health challenge of their child, what caused it, what can make it better.
Positive attitude
Stay positive. There is no question that some families are resilient in the face of chronic mental-health/addiction/developmental-disability challenges. They manage to survive with optimism and a sense of confidence that things will get better. Each tiny step forward is a major victory.
Dr. Peter Szatmari is chief of the Child and Youth Mental Health Collaborative at SickKids, CAMH and the University of Toronto.