Take Care with Mental Health: Special Needs Caretakers Need Support

By Carol Tatom, BA.HSE, CHW

DEPRESSION RATES AMONG PARENTS AND CARETAKERS OF AUTISTIC CHILDREN CONTINUE TO RISE EACH YEAR IN THE UNITED STATES, IMPACTING THE PHYSICAL AND EMOTIONAL HEALTH OF FAMILIES ACROSS THE COUNTRY. RECENTLY, THE AMERICAN GOVERNMENT PASSED LAWS REQUIRING MEDICAID TO COVER AUTISM-SPECIFIC THERAPY SERVICES SUCH AS APPLIED BEHAVIOR ANALYSIS (ABA), BUT NO LEGISLATION HAS BEEN PASSED TO SUPPORT THE PARENTS OR CAREGIVERS OF AUTISTIC INDIVIDUALS.

Increased cost, stress, and demands

On average, autism costs an estimated $60,000 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents (Autism Speaks, 2023).

In addition to the costs associated with autism-specific therapies, extra stress is placed upon family dynamics to accommodate the needs of a differently abled child. Unique parental-related stressors such as children’s behavior problems, changes in family routines to accommodate children’s needs, struggling to navigate the service system, and constraints on parent’s time, affect caregivers’ mental health and their relationships (Iadarola & et al., 2019). Caregiver support is needed to lessen the risks of depression and mental illness in families impacted by autism.

Depression among parents and caregivers can affect the quality of care their children receive. It can also impact the mental health of children. Depression is significantly associated with more hostile, negative parenting, and with more disengaged (withdrawn) parenting, both with a moderate effect size (National Research Council, 2009). Additional stressors that come from raising an exceptional needs child can be a contributing factor to caregiver depression.

Support is vital

Support should be made available to parents and families of children with disabilities. It’s as vital to provide support for parents’ mental health as it is for children’s mental health (Berthold, 2022). While there are many supports for children with exceptional needs, there are not many resources tailored towards their families. Those who support a differently abled individual deserve resources to take care of their own mental health. Such services would aid in lowering their risk of depression and help families learn healthy coping skills for battling the daily stressors of raising a child with a disability.

There has been a notable gap in services for the parents of special needs children. There are specific trends in autism communities that are linked to higher rates of depression among parents. The divorce rates are significantly higher due to the extra stressors placed on relationships. Parents of children with autism spectrum disorder (ASD) had a higher rate of divorce than the comparison group (23.5% vs. 13.8%) (Hartley & et al., 2010).

Autism parents were reported to Child Protective Services (CPS) more often than parents of neurotypical children— often because traits or behaviors associated with autism were perceived as troubling. “Significantly more children with ASD (17.3%) than without (7.4%) were referred to the Child Abuse Hotline” (Fisher & et al., 2019).

Parents struggle to find or maintain work that allows them the flexibility to be at their child’s school if they have a severe meltdown or to attend numerous therapy appointments. The time required for care of children with ASD combined with the limited availability and high cost of specialized childcare may reduce parents’ ability to sustain paid employment, resulting in substantial productivity losses for the family (Ciday, Marcus, & Mandell, 2012).

Social isolation due to ASD-related behavior is also common for caregivers of exceptional individuals and compounded by the recent pandemic. The parents of children with ASD, who had felt isolated before the COVID-19 pandemic, may feel lonelier and more stressed during the pandemic with compulsory social distancing (Yilmaz, Azak, & Sahin, 2021). A lack of economic stability and feeling alone in one’s struggles can both have devastating effects on mental health.

Final thoughts

There has been very little support or therapy options to treat depression in parents of children with autism due to the specificity of the challenges associated with autism spectrum disorders. Cognitive behavioral therapy (CBT) is the gold standard in treating depression, yet families that have children with more severe autism are unable to utilize those services due to lack of community support. Connecting with local nonprofits and service providers that may offer parent support groups can help lessen some of the strain within the autism community for parents and caretakers of individuals impacted by autism.

References

Autism Speaks. (2023). Autism Statistics and Facts. https://www. autismspeaks.org/autism-statistics-asd

Berthold, J. (2022). Half of Moms of Kids with Autism Have High Depressive Symptoms. UCSF. https://www.ucsf.edu/ news/2022/08/423546/half-moms-kids-autism-have-highdepressive-symptoms

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623. https://doi.org/10.1542/peds.2011-2700

Fisher, M. H., & et al. (2019). A population-based examination of maltreatment referrals and substantiation for children with autism spectrum disorder. Autism: the international journal of research and practice, 23(5), 1335–1340. https://doi. org/10.1177/1362361318813998

Hartley, S. L., & et al. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of family psychology: JFP: Journal of the Division of Family Psychology of the American Psychological Association. 24(4), 449–457. https:// doi.org/10.1037/a0019847

Iadarola, S., & et al. (2019). Understanding stress in parents of children with autism spectrum disorder: a focus on under-represented families. International Journal of Developmental Disabilities, 65(1), 20–30. https://doi.org/10.1080/20473869.2017.1347228

National Research Council (US). (2009). Associations Between Depression in Parents and Parenting, Child Health, and Child Psychological Functioning. https://www.ncbi.nlm.nih.gov/books/ NBK215128/

Yılmaz, B., Azak, M., & Şahin, N. (2021). Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review. World journal of psychiatry, 11(7), 388–402. https://doi.org/10.5498/wjp.v11.i7.388

Carol Tatom, BA.HSE, CHW has a bachelor’s degree in Human Services and is a licensed community health worker in Texas. She is also an autism parent, advocate, and professional. Carol currently works at Life Skills Autism Academy and has served on the executive board for the Texas Society of Public Health Education. She has also volunteered for the Dallas Chapter of Autism Speaks. Carol enjoys working with other autism families to connect them to services, support, and resources in their region and to help bridge the gap many families struggle with after receiving an initial autism diagnosis.

LinkedIn: www.linkedin.com/in/carol-t-baa07a152

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