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In a survey of working caregivers, Ho et al. (2005) found that three-fifths of their sample reported fair or poor health status compared to only one-third of non-caregivers. Chronic conditions, such as heart attack/heart disease, cancer, diabetes and arthritis, were reported at nearly twice the rate of non-caregivers. Other health consequences of caring for disabled family members include greater incidences of high blood pressure, poor immune function and lower perceived health status (Feinberg et al., 2006). Ben-Zur et al. (2005) concluded that mothers of children with intellectual disability experienced lower levels of mental health than the general population.
Given such findings among other disabling conditions, the aim of this study was to study self-reported physical and mental health of parental caregivers of adult children with autism.
Procedures. Survey methods were used to generate the data. The survey tool used was developed specifically for this project using questions from the Older Americans Resource Survey (Pfieffer, 1975), the Web-Based Depression and Anxiety Test (Evolution Health Systems, Inc., 2009), the Sheenan Anxiety Screening Test (Mental Health Sanctuary, 2009) and the Behavioral Risk Factor Surveillance System (Centers for Disease Control and Prevention, 2009). The tool was content validated by parents of adult children with autism.
Sample. The convenience sample was recruited from Glenwood, a non-profit organization that provides education and treatment for children, adolescents and adults with autism and emotional disturbance. Both an adult day habitation program and residential services are provided at Glenwood for adults with autism and severe emotional disturbance disorder, which allowed researchers access to a group of parents with adult children who had autism. Adults with severe emotional disturbance disorder were excluded from the sample.
The study was approved by the University of Alabama-Birmingham (UAB) Institutional Review Board prior to mailing out surveys. Researchers from UAB prepared the surveys and provided postage, and Glenwood mailed out the survey. Data from the surveys was analyzed using statistical software (SPSS v17.0). Percentages of health condition occurrences reported in the surveys were compared to percentages on various national and state databases (i.e., CDC, SAMHSA).
Results. Data from this sample of 28 caregivers suggests certain health conditions (depression, diabetes, hypertension and asthma) were higher than state averages when compared with data from the CDC and SAMHSA. This is consistent with Ho et al. (2005), who reported higher prevalence of health conditions among caregivers. In addition, the value of each individual’s unique life experience was expressed through qualitative responses to questions regarding experiences as a caregiver of an adult child with autism. While some individuals spoke of life obstacles when caring for their family member, most caregivers also noted positive feelings for their family member. The sample size was small and results should be interpreted with caution. This research approach was unique in that it focused on the under-represented population of caregivers for adults with autism. The results of this study are consistent with other data that suggests that caregivers report higher rates of chronic health conditions than non-caregivers. This study suggests a need for further research examining the health of caregivers of adults with autism and to gain a better perspective of the health conditions of caregivers as compared to the general population.