Taking Care of the Caretaker

KU-headshot_bFinding Hope for Families of Children with Autism

By Yvonne Bustamante, MS, FDC, College of Social and Behavioral Sciences Adjunct Faculty 

After Diagnosis

For some parents, hearing that their child has autism or an autism spectrum disorder (ASD) can be a time of sadness, grief, and, in some instances, relief. Caregivers are likely to experience a gamut of emotions based on fear, anxiety, and lost dreams for the future. At the same time, parents or caregivers may feel relief in the knowledge that they are not “bad parents,” that their children’s behavior is not a reflection of poor parenting, but instead a manifestation of a developmental disability.1, 2 

The Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 children on average are diagnosed with ASD in the United States. While the diagnosis of ASD is on the rise, the CDC is not able to determine if this due to a broader definition of ASD, better diagnostic tools, or an actual rise in the prevalence of ASD. Instead, the CDC believes it is a combination of factors.3

ASDs are a broad spectrum of symptoms that are most commonly diagnosed within the first three years of life. The symptoms prevent the child from following normal developmental patterns and include deficits in social skills, verbal and nonverbal communication, along with repetitive behaviors and/or obsessive interests.4

These symptoms coupled with an autism diagnosis can throw parents and caregivers into a tailspin of uncertainty, confusion, and disbelief. Parents and families may already be stressed due to their child’s atypical and challenging behaviors, adding a diagnosis of autism can make the situation more daunting. Although there are a variety of pamphlets and educational brochures about autism, parents may remain uncertain about how to cope.        

Impact of Diagnosis

Families of children with ASD are likely to experience any number of negative emotions related to their child’s behaviors and subsequent diagnosis. Research has shown that some of the major negative impact on family members and subsystems include:5-8 

  • Mother–overall psychological distress, stress, anxiety, depression, and decreased quality of life
  • Father–stress, worry and anxieties, depression (to a lesser extent than mother)
  • Marital subsystem–marital discord, lower levels of marital happiness and cohesiveness
  • Sibling(s)–isolation and loneliness, depression, adjustment problems, jealousy, confusion, and embarrassment over sibling’s behaviors
  • Grandparents and extended family–feelings of loss, broken lines of communication, anxiety and depression

However, the negative emotions and psychological distress are different for each family member. In addition, each family member has different root causes for their psychological distress. Based on recent research, the below list offers some of the main causes of distress for family members living with a loved one diagnosed with ASD:9-14

  • Mother–the severity of the child with ASDs behavior problems, severity of the child’s adaptive skills (i.e. daily life skills), time and difficulty in caregiving tasks, lack of support, severity of the child’s disability, the loss of normality and subsequent dreams for the child’s future, invasion of privacy and stress caused by therapy regimens, geographic isolation, low socioeconomic status, single parenthood, lack of resources
  • Father–stress related to the immediate distress and depression of spouse, the loss of normality and subsequent dreams for the child’s future, lack of money for care and resources, geographic isolation
  • Sibling(s)–marital discord due to parental stress, aggressive and disruptive behaviors of the sibling with ASD, taking on caretaker role, geographic isolation (these stressors are mitigated by the sibling’s cognitive age and development)
  • Extended family and grandparents–distress of their loved one, not knowing how to help, isolation, and breakdown in lines of communication

Coping Strategies and Hope

Despite the stressors associated with diagnosis of ASD, studies have shown that families also report positive outcomes. Moreover, positive coping strategies can significantly improve the family and individual family members’ quality of life. Families have reported the positive effects of renewed family strength, resiliency, and cohesiveness, along with personal maturation and a discovery of new life directions. Furthermore, siblings often fare remarkably well, reporting maturity beyond years, deepened empathy, and heightened self-esteem and self-efficacy. Researchers have found that the following coping strategies helped promote these positive outcomes in families and family members:15-22

  • Approach-oriented and solution-focused strategies (taking action, seeking to understand, educating oneself, participating in treatment regimens, educating family members, educating community, becoming involved in running support groups)
  • Reframing stressful events, redefining outlook
  • Involving and recruiting help from family members
  • Trading care duties with spouse and family members
  • Making time for self-care, leisure, and pursuit of individual interests
  • Developing a belief system or spiritual meaning
  • Using support services such as counseling, respite care, and educational and financial planning
  • Preparing in advance for transitional stages in development of the loved one with ASD (e.g. starting school, entering adolescence, graduation from school, entering the work force, and adulthood)
  • Humor
  • Advocating
  • Joining support groups (e.g. local community groups or online social support groups)
  • Blogging
  • Finding quality time for each family member

In closing, families and loved ones need to recognize the need for balance, flexibility, and acceptance of life’s gifts and challenges. Most importantly, be kind to each other and your individual selves, accept what you cannot change, and act upon what can be changed.

Helpful Resources

Yvonne Bustamante, MS, FDC

Ms. Bustamante is currently an adjunct professor for the College of Public Service at Purdue Global and several other universities, and teaches classes ranging from professional development, program evaluation, human services, and general psychology to counseling theory, skills, and techniques.  She has worked in the field of developmental disabilities for the past 16 years as a foster parent, coordinator, crisis case manager, intervention specialist for at-risk families, counselor, master level psychologist, and applied behavioral specialist.  

Ms. Bustamante earned a Bachelor of Arts in Psychology from Keuka College and a Master of Science in Counseling and Applied Behavior Analysis from Nova Southeastern University.  In addition, she holds a Family Development Credential from Cornell University Cooperative Extension and is currently in a doctorate program working towards a PhD in psychology. Her research interests are in technology addictions, online learning modalities, and generational learning styles.


1. J.S. Bloch, and J.D. Weinstein, “Families of Young Children With Autism,” Social Work in Mental Health, 8 no. 1 (2010): 23. Retrieved from EBSCOhost.
2. H. Meadan, J.W. Halle, and A.T. Ebata, “Families With Children Who Have Autism Spectrum Disorders: Stress and Support,” Exceptional Children 77 no. 1 (2010): 7. Retrieved from EBSCOhost.
3. Centers for Disease Control and Prevention, Autism spectrum disorders. Retrieved February 2011 from http://www.cdc.gov/ncbddd/autism/data.html.
4. National Institute of Mental Health, Autism spectrum disorders (pervasive developmenta disorders). Retrieved February 2011 from http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml.
5. J.S. Bloch.
6. S.J. Ferraioli and S. L. Harris, “The Impact of Autism on Siblings. Social Work in Mental Health, 8(1), 41. Retrieved from EBSCOhos.
7. H. Meadan.
8. C.G. Pottie and K.M. Ingram, “Daily Stress, Coping, and Well-Being in Parents of Children With Autism: A Multilevel Modeling Approach,” Journal of Family Psychology, 22 no. 6 (2008): 855-864. doi:10.1037/a0013604.