This article reviews research on the experiences of parents and families of children with ASD and provides recommendations for how professionals and communities can better support them. Key areas of need include access to information and resources, respite care, parent education and support groups, marital counseling, financial assistance, workplace accommodations, and promotion of autism acceptance. With improved support, outcomes can be enhanced for children with ASD, as well as parental and family well-being.
The prevalence of autism spectrum disorder (ASD) has increased dramatically over the past several decades, now affecting around 1 in 44 children in the United States (Maenner et al., 2020). Providing care and support for a child with ASD presents unique challenges for parents and families. Children with ASD often require various therapeutic interventions and services, as well as assistance with communication, social interactions, self-care, and regulating emotions and behaviors (Karst & Van Hecke, 2012). Meeting these extensive needs can negatively impact parental mental health, family relationships, and family finances (Vasilopoulou & Nisbet, 2016). This article reviews research on the experiences and needs of parents and families of children with ASD and provides recommendations for how professionals and communities can better support them.
Information and Resource Needs
A recurring issue identified by parents of children with ASD is lack of access to clear information about their child’s diagnosis, potential outcomes, and effective interventions (Keenan et al., 2010). Many parents report delays in obtaining an ASD diagnosis, struggling to understand assessment results, and feeling uncertain about prognosis and life trajectories for their child (Mulligan et al., 2012). Connecting families with knowledgeable professionals who can explain evaluation findings, provide education on ASD, and offering recommendations is vital after diagnosis and on an ongoing basis. Resources should also be shared regarding evidence-based services, parent support groups, financial assistance programs, and advocacy initiatives (Vasilopoulou & Nisbet, 2016). Equipping parents with information empowers them to make informed choices for their child and family.
Respite Care
Given the intensive support required by many children with ASD, parents report severe lack of respite and self-care time (Barker et al., 2011). Respite provides temporary relief to caregivers and is an essential resource for avoiding parental burnout. However, barriers such as restrictive eligibility criteria, extensive waiting lists, lack of qualified providers, and unaffordable costs limit access to respite services for many families (Harper et al., 2013). Policies around respite care for families of children with disabilities need considerable reform to make services more readily available. Respite should be viewed as a basic necessity, not a luxury, for sustaining caregiver mental health and preventing crises.
Parent Education and Support
Parent education programs tailored to ASD can enhance understanding of a child's needs and teach strategies for promoting development and handling challenging behaviors (Nicholas et al., 2020). Support groups also allow parents to share information and experiences, reducing isolation and validating common challenges (Banach et al., 2010). Both parent training and support groups have demonstrated effectiveness for reducing parental stress and increasing empowerment and quality of life (Da Paz & Wallander, 2017; Nicholas et al., 2020). Thus, offering easily accessible education programs and support networks should be priorities for communities aiming to assist families living with ASD.
Marital Counseling
Caring for a child with ASD can negatively impact the marital relationship, with higher divorce rates compared to parents of neurotypical children (Hartley et al., 2010). Contributing factors include: mismatches in coping strategies, lack of shared leisure time, and disagreements over interventions (Ramisch et al., 2014). Marital counseling can help couples enhance communication, problem-solve challenges related to ASD, reconcile differing views of their child, and reconnect emotionally (Sim et al., 2017). By supporting the marital relationship, counseling interventions demonstrate potential to improve family adaptation and limit adverse outcomes in children with ASD (Gau et al., 2012).
Financial Assistance
The costs of raising a child with ASD exceed expenses for children without disabilities by tens of thousands of dollars annually (Lavelle et al., 2014). Cost barriers frequently prevent families from accessing needed services, such as: applied behavior analysis, speech therapy, and occupational therapy (Sharpe & Baker, 2007). While public insurance programs help offset costs for some families, many still experience financial strain associated with lost income and out-of-pocket expenditures related to their child's treatment and care (Cidav et al., 2012). Increasing funding for assistance programs, insurance reforms, and policies around workplace leave and flexibility, would aid families facing economic hardship due to having a child with ASD.
Workplace Accommodations
Inflexible work policies present significant challenges for parents of children with ASD, with many reporting needing to reduce hours or quit jobs altogether, to attend appointments and meet caregiving demands (Cidav et al., 2012). Allowing flexible scheduling, remote work options, and family leave time would enable more parents to remain in the workforce, while still caring for their child (Scott et al., 2017). Workplaces aiming to recruit and retain employees with ASD in their families should rethink traditional assumptions of the ideal worker and implement more inclusive policies (Scott et al., 2017).
Promoting Autism Acceptance
Lack of public knowledge and understanding about ASD often leads to stigma, judgment, and rejection of children with ASD and their families (Papadopoulos et al., 2019). Feeling embarrassed or needing to apologize for their child's behaviors due to intolerance from others, further compounds parents' distress (Safe et al., 2012). Broad autism awareness and acceptance initiatives through public education campaigns, diversity training, positive media representations, and anti-stigma programs would foster more inclusive and supportive communities for families living with ASD.
While raising a child with ASD poses multifaceted challenges for parents and families, research points to key avenues for providing support. Enhancing access to information, resources, respite care, parent education, counseling, financial assistance, workplace flexibility, and autism acceptance, all demonstrate potential to significantly improve family adaptation, reduce caregiver burden, limit marital discord, and promote quality of life. Supporting the needs of parents and families ultimately provides benefits extending to children with ASD themselves. Going forward, communities and policy makers must prioritize implementing comprehensive support systems for families living with ASD.
References
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ABOUT THE AUTHOR:
Mireille Ukeye, Ph.D. is a school psychologist and an assistant professor of school psychology in northern California. Her research uses multiple modes of investigation to better understand autism spectrum disorders (ASD) and other behavioral disorders to determine the most effective approaches to treating and supporting students with ASD and other behavioral needs in schools. Additionally, her research investigates the different ways that mental health providers can support families with children with disabilities.
Read the article here.