Strengthening Parent-Professional Relationships

By Kate Fiske, Ph.D., BCBA-D

When professionals work with a family of a child with autism spectrum disorder, the child, understandably, is often the focus of treatment. However, establishing a strong relationship with the child’s parents by working to understand their experiences raising a child with ASD, their perspectives on their child’s development and skills, and the methods to best support them can improve the partnership between parents and professionals.

Why is it important to understand parents’ experiences?

Research shows that parents of children with ASD experience a greater level of stress than virtually any other group of parents. The symptoms of ASD—delays in communication, underdeveloped social skills, presence of challenging behavior—have been shown in research to be directly related to the levels of stress that parents experience. Parents also experience higher levels of anxiety and depression than do parents who do not have a child with ASD. Parents who are highly stressed, anxious, or depressed may be less likely to work effectively with professionals or follow through on recommendations for care. Professionals may attribute parent behavior to unwillingness to cooperate rather than to parents’ difficulty coping with their child’s diagnosis. Understanding the impact of ASD on parents and their relationships, careers, and well-being can help professionals better provide the support parents need to collaborate more effectively.

Understand that adjusting to the diagnosis is not a linear path.

Parents may experience periods of increased stress and associated emotions of grief and anger throughout their child’s development. These increases may happen during periods of transition for their child, such as from one classroom or school to another, or at significant milestones, such as birthdays. At these times, parents may reflect upon their child’s accomplishments or compare their child to peers his age who do not have ASD. They may feel the loss of the goals they once had for themselves or for their child that they have not and may not accomplish. Recognizing that these emotions will continually shift over time, and that they are not limited to the early years of their child’s development, will increase professionals’ empathy for and understanding of parents.

Consider the family’s culture when offering recommendations for treatment.

Professionals should recognize the impact that family culture can have on parents’ perspective of their child and their beliefs regarding the goals that should be targets of treatment. Parents’ beliefs and related goals may not match the professional’s. For example, some cultural groups do not value child independence in the same way as some professionals, and as a result parents may not prioritize the goals related to independence. Professionals who push for goals that are not valued by the family may meet resistance. Also, all professionals should consider the family context, such as who in the family will be involved in the child’s treatment and the family routines in which treatment will be implemented, when working with individuals in the home. These steps will ensure that treatment recommendations will fit within the family context and be as effective as possible.

Take steps to improve rapport in interactions with parents.

Professionals should approach their interactions with parents with empathy and respect, conveying openness, genuineness, and understanding through thoughtful questioning about parents’ experiences and welcoming body language. Professionals should listen to parents without judgment, demonstrating respect for their role and knowledge as parents of the individual with ASD. To improve interactions with families, professionals should share with parents what they enjoy about working with the child rather than focusing entirely on deficits or challenging behavior.

Recommend sources of support.

Parents may find considerable support from organized parent support groups, ASD-friendly community events, organizations for individuals with ASD and other disabilities (e.g., Autism New Jersey, Special Olympics), or individual therapy that teaches parents effective skills for coping. Professionals should be able to provide parents with local and national resources for support and provide recommendations for respite care, community events, and other services.

About the Author

Kate Fiske, Ph.D., BCBA-D is a Clinical Associate Professor at the Graduate School of Applied and Professional Psychology of Rutgers, The State University of New Jersey and an Associate Director of Behavioral and Research Services at the Douglass Developmental Disabilities Center. She has worked in the field of ASD treatment for over 15 years, providing evidence-based services in skill acquisition and behavior reduction in inpatient, outpatient, and school settings. She has authored numerous chapters and journal articles on the treatment of children with ASD and their families, and is the author of Autism and the Family: Understanding and Supporting Parents and Siblings.