Many individuals with Autism Spectrum Disorder (ASD) require significant levels of support in home, school, and community settings. Due to deficits in social communication and interaction, compounded by restricted, repetitive patterns of behavior, many will not be able to keep themselves safe and need constant supervision, even as adults. This duty usually falls to already exhausted families who experience the daily stresses of intense caregiving demands and restricted activities. Research clearly suggests that respite is a lifeline for families, so it is vitally important that it provide the intended effects.
While the majority of literature to date has focused on the negative effects of autism on families, it is important to first note parents’ adaptive responses to its challenges. According to Bayat (2007), many families exhibit characteristics of resilience such as pulling resources together, feeling connected to one another, making meaning out of adversity, affirming their strengths, becoming more compassionate, and having a spiritual belief system. On a broader level, parents and other family members have often been the pioneers of new and expanded service provision options (Jacobson, 2000), research, and advocacy organizations. These accomplishments are noteworthy in their own right and even more so given the intense and constant demands autism places on family members.
Increased caregiving requirements are commonly reported by parents of children with any disability. Pisula and Kossakowska (2010) found that mothers of children with autism spent an average of 9.5 hours per day caring for their child, compared to 5.3 hours for parents of typically developing children. This extraordinary amount of caregiving can take a cumulative toll. In fact, parents of adult children with autism reported that a main unmet need was “breaks from caring” (Hare, Pratt, Burton, Bromley, & Emerson, 2004, p. 431). To further quantify these demands, Smith et al. (2010) conducted an 8-day diary study which indicated that, compared to mothers of typically developing individuals, mothers of adolescents and adults with autism were three times more likely to experience at least one stressful event per day and had twice as many days with multiple stressors (p. 175). This consistent and pervasive stress may make everyday parenting tasks a challenge (Boyd, 2002).
Parents also reported altering their daily activities and life plans as a result of having a child with autism. Restrictions included less frequent attendance of religious services, reduced employment opportunities due to childcare issues, and less participation in community events (Lee, Harrington, Lewis, & Newschaffer, 2008). These limitations were also present when families attempted to engage in recreation and leisure activities, such as the need to extensively prepare for simple trips, a lack of free time to relax, and great difficulty taking family vacations (Hutton and Caron, 2005).
Siblings of individuals with ASD are also considerably affected by the extent of their brother or sister’s needs. They have reported concerns regarding safety, additional caregiving responsibilities, and limited access to their parents’ attention (Harris & Glasberg, 2003). Yet, when parents are intently focused on the specialized care of the child with autism (as they often must be), they may have limited availability to meet the siblings’ needs (Abelson, 1999).
Not surprisingly, parents are at risk of both physical distress (e.g., poor sleep) and psychological distress exacerbated by extreme stress, anxiety, fear, and guilt. Marital difficulties, fears about safety, and financial worries over autism intervention are just a few of the specific concerns frequently shared in the literature. Of most concern is the possibility of a higher risk of abuse and neglect as well as ineffective parenting of all children in the family (Abelson, 1999). Clearly, there is a “body of evidence documenting marked quality of life decrements in families of children with autism” (Lee et al., 2008, p. 1158). Services for alleviating these stresses are warranted to mitigate potentially damaging effects on both individual family members and the family unit (Manning, Wainwright, & Bennett, 2011).
While there are few well-controlled studies on the effectiveness of respite, many studies have evaluated parents’ perceptions of the support respite offers. Chan and Sigafoos (2001) concluded that use of respite care was associated with reduced parental stress in a majority of participating families. There is a clear consensus that parents who have more support available to them report reduced stress (Hutton & Caron, 2005). Furthermore, while the primary benefit of a respite program is to allow parents a break from fulltime caregiving responsibilities, advantages may extend beyond the effects on primary caretakers. Siblings often have increased access to their parents’ time and attention when respite services are available (Hare et al., 2004). Several studies have also reported improvements in children’s behaviors as a result of reduced parent stress (Osbourne et al., 2008).
Research has indicated the need for more “autism-friendly” respite options to provide the type, quantity, flexibility, and level of service that families need in order to cope with daily and chronic challenges (Hare et al., 2004). Parents have also consistently reported the critical nature of training for respite personnel (Hare et al., 2004). They express significant concern about entrusting their loved one with others less familiar with the individual and the impact of his or her diagnosis. Respite offered by those who may be well-intentioned but not well-trained can negate the potential benefits of service. Specifically, parents have suggested that low-quality services were unreliable and caused “confusion and distress for themselves and for the person with ASD,” in part because providers “did not recognize the importance of routine and predictability” for individuals with autism (Hare et al., 2004, p. 434). Having the provider understand the complex and unique diagnostic criteria of autism and the specific ways autism affects the individual are critical to the success of the respite time.
Families entrust respite providers with the ultimate responsibility: the sole care of their loved one. No matter the age of the individual with autism, the family’s concern regarding placing this trust in someone else must be respected. Due to the unique challenges associated with autism, parents typically have certain expectations of their respite providers. Above all else, safety is the primary objective. Parents have repeatedly shared how desperately respite services are needed, but only if they feel that their child will be safe in the provider’s care. Understanding the traits of autism, knowing the individual well, and appreciating potential dangers in the environment can help ensure the safest conditions. Flexibility, staying calm during stressful situations, and good problem solving skills are all essential qualities of respite providers that relate directly to keeping everyone safe. Beyond the clear focus on safety, certain professional characteristics are also important when providing respite, such as being reliable, punctual, and adhering to confidentiality. Providers should support the individual’s development by learning how to engage him or her and following the plans the family has in place to increase independence. It is crucial to be as consistent as possible with the family’s instructions. The role of respite provider takes energy, enthusiasm, and creativity as well as a willingness to learn new skills.
Whether you are caring for someone in your family or doing so as your profession, caregiving is a unique job that requires a lot of patience and energy. While it can be extremely rewarding, it may also produce stress and fatigue. These side effects may impact relationships between respite providers, families, and individuals with autism as well as other aspects of their lives. Although it may seem there is never enough time, taking care of oneself should be considered a priority in order to be able to care for anyone else. Making time for yourself, participating in stress reduction activities like exercise, and communicating the need to take a break when necessary are a few ways to stay strong and committed to this important role. Effective respite provision may afford the opportunity to take care of oneself more easily.
Families may wish to have a basic training tool and share essential information about their loved one with autism by using the Individualized Respite Care Guide: A Resource for Families and Providers, available free of charge. Download at www.autismnj.org/publications or call 800.4.AUTISM to obtain a copy. It is designed to be of use whether the provider is a professional, an extended family member, or friend. This guide and the family/provider communication forms may be used as one component of a comprehensive respite provider training program.
Amy Golden, MS, BCBA, is a Board-Certified Behavior Analyst at Behavior Therapy Associates. Elizabeth Neumann, MA, BCaBA, is an Education and Training Manager and Suzanne Buchanan, PsyD, BCBA-D, is Executive Director at Autism New Jersey.
References
Abelson, A. G. (1999). Respite care needs of parents of children with developmental disabilities. Focus on Autism
and Other Developmental Disabilities, 14, 96-100.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51, 702-714.
Boyd, N. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17, 208-215.
Chan, J. B., & Sigafoos, J. (2001). Does respite care reduce parent stress in families with developmentally disabled children? Child & Youth Care Forum, 30, 253-263.
Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8, 425-444.
Harris, S. L., & Glasberg, B. A. (2003). Siblings of children with autism: A guide for families (2nd ed.). Bethesda, MD: Woodbine House.
Hutton, A. M. & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and other Developmental Disabilities, 20, 180-189.
Jacobson, J. W. (2000). Early intensive behavioral intervention: Emergence of a consumer-driven service model. The Behavior Analyst, 23, 149-171.
Lee, L., Harrington, R. A., Lewis, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147-1160.
Manning, M. M., Wainwright, L., & Bennett, J. (2011). The double ABCX model of adaptation in racially diverse families with a school-age child with autism. Journal of Autism and Developmental Disabilities, 41, 320-331.
Osbourne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Developmental Disorders, 38, 1092-1103.
Pisula, E., & Kossakowska, Z. (2010). Sense of coherence and coping with stress among mothers and fathers of children with autism. Journal of Autism and Developmental Disorders, 40, 1485-1494.
Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 167-178.
