It is common knowledge that having a child with ASD has an impact on the family, and the family has a profound impact on the developing child. Why then are there so few services to support families as they deal with the cumulative challenges they face managing child behavior, family relationships, family routines and interactions with medical, early intervention and special education providers and policymakers?
Raising a child today is very stressful because of the pressures to help our children succeed – demanding homework, afterschool activities, and the pull of technology. Family life often suffers as parents have work and other roles that leave little time for self and family. Raising a child with special needs adds additional stress beginning with the first suspicion or complaint that something might be wrong with your child. This begins the discovery process and relentless appointments and decisions about treatment, educational placement and services.
Professionals recognize that best practices involve family-centered services, but this philosophy is not always translated into practices that include parents as active members of the team, nor do they bolster the parents’ confidence and ability to cope. When the focus remains narrowly child-centered, parents may feel anxious, unprepared and unsupported as they attempt to make meaning of the diagnosis, manage the tension between reality and hope, and develop effective parenting strategies.
Below are some thoughts to help professionals, families and the general public appreciate that we cannot afford to be exclusively child-centered, the entire family is affected when there is a child with ASD and all family members need understanding and support.
Family Relationships and Family Life
Parent-Child Relationship – Even before a child is diagnosed with ASD, the parent-child relationship may be affected by the child’s developmental and behavioral challenges and the parents’ struggle to form a secure attachment and be responsive to their child’s needs. When therapy begins, the parent role is often expanded to include teacher, therapist and advocate, or restricted because the parent must give up a satisfying job due to 24/7 demands and responsibilities. Other children in the family may react – they may take the role of good child so they do not burden their parent, or the role of bad child to get attention. Comments about unfair treatment are based on the reality that parents often spend more time managing the child with special needs. Parents need to have realistic expectations for the typically developing child and give them age-appropriate information about their sibling’s disability. Most importantly, parents must find time to attune and connect emotionally to each child.
Marital or Co-Parenting Relationship – Parents may vary in a number of ways as they raise their child with ASD: different beliefs about etiology and effective treatment, as well as different parenting practices and coping strategies. Self-blame and blaming the other may affect the marital relationship when fear, anger, anxiety and sadness are not acknowledged or expressed. It is helpful for parents to clearly define their roles and tasks so they function cooperatively, supporting one another as they deal with constant reminders that their child is different from the one they imagined at birth. A working partnership includes time to nurture the marital relationship and form a strong alliance which promotes the parents’ physical and mental health.
Other Relationships – One of the unique features of ASD is that the child may look typical so that other family members or friends expect age-appropriate behavior and judge the parents when the child demonstrates unusual or defiant behavior. They do not understand the parents’ struggles to get through the day. These individuals need to be informed to help them understand the child’s disability and provide the support and affirmation that parents need to function optimally.
Family Routines and Rituals – Family life is composed of daily routines and rituals that celebrate family traditions and special occasions. Children with sensory issues may become overwhelmed at birthday parties, holiday celebrations or during morning and bedtime routines. The more parents understand the unique needs of their child, the more they can provide the appropriate environmental and parenting supports to keep their child regulated. This may result in parental decisions to forgo, adapt or create new and meaningful routines and rituals that create family identity.
Despite the increasing prevalence of children with ASD, there remains a scarcity of high-quality family-centered treatment. Families can benefit from a range of vital services depending on need: couples and family therapy, multiple family discussion groups, family education and support programs, consultation and coaching services. In addition, special education, medical and related service personnel need training opportunities to address the full range of family needs and promote child and family resilience.
At the Ackerman Institute for the Family, an experienced team of family therapists are working together to develop best practices in family-centered treatment for children with ASD and other developmental disabilities. Families have complex needs and therapists need to augment their systemic and relational treatment approaches with current knowledge regarding brain research, special education policies and practices, and evidence-based treatment. In addition to individual referrals to the Ackerman Treatment Center, the team will be facilitating multiple family discussion groups in the fall. Because of our clinical work, we are able to share training tapes and anecdotal stories that highlight the families’ voice in our professional workshops which are offered each year.
There is much we can learn from parents, the experts on their child’s struggles and strategies to help him or her succeed. They need more than our support; they need knowledgeable, competent and responsive professionals who use family-centered, strengths-based practices. High quality family services are vital to promote good outcomes for children with ASD.
Judy Grossman, DrPH, OTR is the Associate Director of the Center for the Developing Child and Family at the Ackerman Institute for the Child, Director of their Special Needs Project, and adjunct faculty at New York University. Prior experience includes Associate Research Scientist at Yale School of Medicine and policy research for the New York State Department of Education. She lectures widely on family resilience, early intervention, mental health consultation and program development and evaluation.