By Samantha Crawford

As you likely know, caring for a child or children diagnosed with Autism Spectrum Disorder (ASD) can be emotionally and physically exhausting. It is a developmental disability that impacts an entire family—not simply the individual diagnosed with ASD. Research indicates that families that are affected by ASD are more stressed, depressed, and anxious than families who have a child with another type of disability or no disability at all (Garrido et al., 2020; Zeng et al., 2020; Galpin et al., 2018; Russa et al., 2017; Searing et al., 2015). It likely comes as no surprise then that families and caregivers supporting a child with ASD also may have a reduced quality of life due to the strains, pressures, and lack of support so frequently associated with having a child with a disability.

Although the research on the impact that the diagnosis of autism has on a family is well-established, less is known about how to lessen or alleviate stress on these families. Recent research seeks to identify which supports are most helpful to families. In compiling this information, I divided these supports into three categories (social support, coordinated services, and information) discussed below.

Social Support

            Social support includes support from both formal and informal sources. Formal sources may include doctors, school personnel, speech therapists, occupational therapists, applied behavior analysis therapists, and the list goes on. Informal sources include spouses/partners, extended family, neighbors, friends, one’s congregation, club or team, etc. (Galpin et al., 2018). In one study, parents with a child or children with autism were surveyed and interviewed concerning which social supports they valued most. Parents indicated that doctors were the most helpful formal support with spouses/partners considered as the most helpful informal support (Searing et al., 2015).

Whether support was provided by a professional in a specific field or by a family member or friend, relationships and support were perceived as most beneficial to parents when individuals demonstrated caring and understanding rather than judgment or ignorance (Galpin et al., 2018; Searing et al., 2015). One parent illustrated this point when she explained her positive experience, saying: “My son is treated as someone they are thrilled and excited to know, not a burden. His differences are seen as just that, not something that needs to be changed or manipulated. He is accepted for who he is.” (Searing et al., 2015, p. 3698). Unfortunately, many families with a child with ASD, often feel alienated from regular activities and want to feel that they have a place in their communities. This connection may be facilitated by improved communication and relationships between parents and their child’s school. Parents in one study expressed a desire for this communication and, more specifically, a desire to know who was working with their child and what was being done. Parents can also be supported in their communities by connecting with other parents in similar situations, a support that many parents considered highly valuable (Galpin et al., 2018).

Overall, social support is considered a protective factor against stress and depression and a crucial support for families in feeling accepted by and connected with their community. One study indicated that increases in perceived social support was correlated with decreased depression, decreased burden of caregiving, and greater emotional and physical health (Searing et al., 2015). Furthermore, family support has been positively linked with improved perceptions of quality of life (Zeng et al., 2020).

Coordinated Services

Coordinated services include supports that are physical or material in nature including the provision of meaningful services. This may include a variety of health and behavior services, counseling for family members, respite care, special education, transition programs and services targeted towards parents and siblings of the child with ASD (Zeng et al., 2020; Galpin et al., 2018; Russa et al., 2017). Many parents and professionals recognize the need for more formal family centered services that seek to individualize care to family needs and bring families together rather than fragmenting them. For instance, some parents have noted that there is a lack of opportunity for siblings to engage in activities or programs with their brother or sister with a disability (Galpin et al., 2018). This can contribute to a lack of meaningful connection between siblings and vulnerability for a lower quality of life for siblings of children with ASD (Garrido et al., 2020; Galpin et al., 2018).

Other parents noted the crucial nature of respite care for their family well-being and want professionals to provide additional options for respite care that include evenings, weekends, and school holidays (Galpin et al., 2018). Additionally, the research indicates that family’s value what are termed “proactive services” in their community. These consist of services where professionals actively contact family members and ask what they want and need, rather than waiting to hear from families that are already overwhelmed (Galpin et al., 2018). In these types of programs, fathers and mothers may be more actively involved in designing supports for their child and implementing these supports in their homes (Zeng et al., 2020).

Information

Many families can be overwhelmed by the amount of information that is initially thrown at them, by what they are “supposed” to know, and by the seemingly new language they are expected to understand. Knowledge and training are crucial supports for families who have a child or children with autism. Also of paramount importance is the quality of information than parents have access to (Russa et al., 2015). Many parents desire to know how they can understand their child who has limited communication and how to manage difficult behaviors (Galpin et al., 2018). Parents are also asked to adapt to their child’s changing abilities and needs as they undergo changing developmental stages, often without adequate training or support (Russa et al., 2015). As such, it is important that families have access to community programs and supports that provide information and parent skills training. Topics may include advocating for their child, navigating the special education and healthcare systems, as well as transitioning to adulthood.

Conclusion

Families of children with autism face many challenges. These challenges include immense stress and a potential decrease in family quality of life. Research indicates there are several supports that may alleviate some of this stress. These supports can be categorized into three categories including social supports, coordinated services, and information. If you are in need of any of these supports please communicate your needs with family members, friends, and professional providers so that your family can get the support they need and deserve.

For additional information see the articles included in the reference section. Additional information and resources are also available at: www.nationalautismcenter.org, www.autismspeaks.org, and www.autism-society.org

References

Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., & Pellicano, E. (2018). ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum. Autism: The International Journal of Research and Practice, 22(5), 571-584. https://doi.org/10.1177/1362361316687989

Garrido, D., Carballo, G., & Garcia-Retamero, R. (2020). Siblings of children with autism spectrum disorders: social support and family quality of life. Quality of Life Research, 29(5), 1193-1202. https://doi.org/10.1007/s11136-020-02429-1

Russa, M. B., Matthews, A. L., & Owen-DeSchryver, J. S. (2015). Expanding Supports to Improve the Lives of Families of Children With Autism Spectrum Disorder. Journal of Positive Behavior Interventions, 17(2), 95-104. https://doi.org/10.1177/1098300714532134

Searing, B. M. J., Graham, F., & Grainger, R. (2015). Support Needs of Families Living with Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 45, 3693-3702.https://doi.org/10.1007/s10803-015-2516-4

Zeng, S., Zhao, H., Hu, X., Lee, J. D., Stone-MacDonald, A. K., & Price, Z. W. (2020). Are we on the Same Page: a Dyadic Analysis of Parental Stress, Support, and Family Quality of Life on Raising Children with Autism Spectrum Disorders. Journal of Developmental and Physical Disabilities, https://doi.org/10.1007/s10882-020-09761-x