Supporting Families with Autism in Our Schools

Parent Perspectives and Need for Support

Studies indicate that the demands placed on parents caring for an autistic child contribute to a higher overall incidence of parental stress, depression, and anxiety which adversely affects family functioning and marital relationships compared with parents of children with other disabilities. It is well established that social support is protective of optimal parent well-being and, therefore, a key element of intervention and treatment. Supporting and ensuring the family system’s emotional and physical health is a critical component of best practice.

School professionals working with families of children with autism should be aware of the negative effects of stress and anxiety and assist in offering services that directly address parental needs and support mental health. Negative outcomes include: (a) increased risk of marital problems; (b) decrease in father’s involvement; (c) greater parenting and psychological distress; (d) higher levels of anxiety and depression; (f) added pressure on the family system; (g) more physical and health related issues; (h) decrease in adaptive coping skills; and (i) greater stress on mothers than fathers. Parents often experience stress as they decide how to allocate their attention and energy across family members. For example, they may feel guilty about the limited time they spend with their spouse and other children, when so much of their attention is focused on the child with autism.

Understanding parent perspectives and targeting parental stress is critical in enhancing well-being and the parent-child relationship. School professionals who have knowledge and understanding of the stressors parents face are able to provide more effective assistance and support to the family. When families receive a diagnosis of autism, a period of anxiety, insecurity, and confusion often follow. Some autism specialists have suggested that parents go through stages of grief and mourning similar to the stages experienced with a loss of a loved one (e.g., fear, denial, anger, bargaining/guilt, depression and acceptance). Sensitivity to this process can help school professionals provide support to families during the critical period following the child’s autism diagnosis when parents are learning to navigate the complex system of autism services.

Mothers, in particular, may experience high levels of psychological distress, depressive symptoms, and social isolation. Research has found that nearly 40% of mothers reported clinically significant levels of parenting stress and between 33% and 59% experienced significant depressive symptoms following their child’s diagnosis of autism. Challenges in obtaining a timely ASD diagnosis and lack of appropriate treatment services and education were contributors to parental stress and dissatisfaction. Frequently reported important unmet needs include (1) financial support; (2) break from responsibilities; (3) rest/sleep; and (4) help remaining hopeful about the future.

Support, Educate, Advocate

School professionals can support parents by educating them about autism; provide guidance and training; assist them in obtaining access to resources; offer emotional support by listening and talking through problems; and help advocate for their child’s needs. It is especially important to acknowledge the value of parents’ unique and important perspective, validate their observations and concerns, and reinforce their roles as important contributors to the educational process. Professionals should also help the family understand what the identification or diagnosis of autism means and what the next steps are in addressing the issues of support and educational planning. This includes helping parents achieve a better understanding of how their child thinks and learns differently and become familiar with strategies that might help both at home and school. For example, parents can be taught evidence-based strategies that successfully support their children. Parent-implemented interventions have the potential to improve the child’s communication skills and reduce aggression and disruptive behaviors, as well as increase the functioning of the family system. Parents can learn to implement story-based interventions, visual supports/schedules, and Pivotal Response Treatment (PRT) strategies in their home and/or community through individual or group training formats. Professionals can also assist families by offering parent training in behavior management, which has been shown to increase parents’ self-efficacy and decrease their child’s problematic behaviors. Establishing a school-based parent support group may also be consideration.

Another major strategy for helping families with autistic children is providing information on the access to ongoing supports and services. This includes publicly funded, state-administrated programs such as early intervention, special education, vocational and residential/living services, and respite services. Professionals and family advocates need to be aware of the various programs and their respective eligibility requirements and help parents to access these services. Parents will also need timely and appropriate information regarding their children’s programs and services and may have questions about long-term educational planning. It is important to openly communicate the student’s strengths and weaknesses and encourage parents to play an active role in developing and implementing intervention plans and IEPs. Professionals should also remember that parents have a life-long role in their child’s development and realize that the family’s needs will change over time, and that they have other family responsibilities in addition to their child with autism. When schools use a family-centered approach and work to increase parental involvement and support, not only do the parents and children benefit, but school personnel do as well.

Adapted from Wilkinson, L. A. (2017).  A best practice guide to assessment and intervention for autism spectrum disorder in schools (2nd Edition). London and Philadelphia: Jessica Kingsley Publishers. 

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Key References & Further Reading

Barnhill, G. P. (2014). Collaboration between families and schools. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 219-241). Washington, DC: American Psychological Association.

Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375-387.

Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N…Silverstein, M. (2014). Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40-46. doi:10.1001/jamapediatrics.2013.3445.

Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480.

Hardan, A. Y., Gengoux, G. W., Berquist, K. L., Libove, R. A., Ardel, C. M., Phillips, J…Minjarez, M. B. (2015), A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. Journal of Child Psychology and Psychiatry, 56, 884-892. doi: 10.1111/jcpp.12354

Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009)
Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178-187.

Kiami, S. R., & Goodgold, S. (2017). Support Needs and Coping Strategies as

Predictors of Stress Level among Mothers of Children with Autism Spectrum Disorder. Autism Research and Treatment Volume 2017, Article ID 8685950, https://doi.org/10.1155/2017/8685950

Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162-1182. doi: 10.1542/peds.2007-2362

National Autism Center. (2015). Evidence-based practice and autism in the schools: An educator’s guide to providing appropriate interventions to students with autism spectrum disorder (2nd ed.). Randolph, MA: Author

Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology, 37, 8-38.

Wagner, S. (2014). Continuum of services and individualized education plan process. In L. A.

Wilkinson (Ed.). Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 173-193). Washington, DC: American Psychological Association.

Wilkinson, L.A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2^nd Edition). London and Philadelphia: Jessica Kingsley Publishers.

Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. doi: 10.1177/1362361311422708

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books,  A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).