As the prevalence of autism continues to increase, 1 in 22 children in California, it is vital that we as providers better understand how to tailor interventions to best meet the needs of our autistic youth and their families. There are many different types of interventions for autism with different areas of focus and different philosophies. What rings true across the board is the importance of parent participation no matter what the intervention. It is important that we as providers understand and can explain this to families.
There are two key parts to parent participation:
1. The first part has to do with developing goals of intervention with families. These goals should be child- and family-led and provider-informed. The goals should be focused on what the child and family are seeking help with. Providers can help by giving examples of what goals could focus on if a family is not sure and can reframe if certain proposed goals don’t feel realistic. An example is reframing a goal of having a non-verbal child with severe intellectual disability accompanying their autism have spoken language to a goal of helping the child develop communication skills and teaching people around them to understand their communication. Interventionists can also help reframe goals that focus on “fixing” the child or having them “behave typically or normally” by providing psychoeducation on the effects of masking on autistic youth.
2. The second part has to do with generalizing skills that are learned through intervention. Studies have shown that autistic children attain new skills better within caring relationships and through repetition across multiple settings. Studies have shown that children are more likely to respond to interventions to change behavior in trusting relationships where they feel heard and understood. And this is no different for children with autism. Parents are the primary guides for their children to prompt or scaffold desired changes in behavior. Therefore, teaching parents how to guide their children empowers parents who often feel helpless in parenting their children with autism.
It is important that children have a chance to practice newly learned skills in different settings to help generalize the skills. Parents are a key part of this happening. Even for a child who is receiving 20+ hours of Applied Behavioral Analysis in a center, it is difficult for the skills learned to generalize beyond the center setting without parent participation. Parents are often the bridge between different treatment providers in terms of sharing information between autism intervention programs and school, etc.
Parental involvement in autism intervention can be characterized as direct (e.g., parent-mediated home-based training, family-centered intervention, parent mentoring programs) or indirect (parent training and support groups). A review of studies shows that parental quality of life and family quality of life improves more with direct parental involvement compared to indirect or no parental involvement.
There are some interventions for autism that focus solely on parent sessions with the consultant working directly with parents and then parents working with their children. One such example is Relationship Development Intervention. This method has shown good results in helping with identified goals and can be well-suited for some families. Here is further information on RDI https://www.rdiconnect.com/
As primary care providers, you are often one of the first people that parents turn to when first receiving a diagnosis of autism for their child. As a result, it is important that you help guide their expectations about their involvement in treatment. It can be helpful to share how their involvement can yield better results for their child and their family as a whole.
References:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8469292/
https://www.rdiconnect.com/about-rdi/
https://www.hanen.org/Helpful-Info/Articles/The-Power-of-Parents-in-Autism-Intervention.aspx
AUTHOR:
Charmi Patel Rao MD, DFAACAP
Co-Medical Director, Vista Hill Foundation
Health Science Clinical Professor, UCSD Department of Psychiatry
President, San Diego Academy of Child and Adolescent Psychiatry