Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis
Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2020). Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis. Journal of autism and developmental disorders, 1-9. https://doi.org/10.1007/s10803-020-04760-5
You can read the full article here: https://pubmed.ncbi.nlm.nih.gov/33090358/
Shortly after stay-at-home orders were initiated in the United States, the Autism Alliance of Michigan (AAoM) sent out an online survey to assess the level and source(s) of stress in families of individuals with ASD. They were also curious to see if there is any association between this stress and employment status of parent, level of severity of individual with ASD, or level of support before the stay-at-home orders.
- Caregivers and individuals with ASD report high levels of stress and disruption to daily life with the onset of the COVID-19 pandemic
- Greatest sources of stress for caregivers include:
- Concerns about the individual with ASD being home all the time
- Concerns of themselves or the individual with ASD getting sick
- Worried about a lack of care for individual with ASD other than themselves
- Parental stressors such as having to work while providing care to the individual with ASD
- In regard to interest in in-home respite services:
- Only 27% of caregivers were interested at the time, while 31.3% said they may be interested and 41.6% denied any interest.
- Of self-respondents, 3 said they were interested, 4 said they might be, and 4 said they were not interested.
- Higher severity of ASD symptoms was found to be associated with greater interest in respite care.
- Concerns about respite care were categorized under four overarching themes and 11 sub-themes as listed below:
- COVID-19 Concern
- Fear of illness
- Need for social distancing
- Respite provider concern
- Resistance from person with ASD
- Risk of abuse
- Family concerns
- Disruptive to routine
- Not Desired
- Already have this
- Not needed
- Manning et al. (2020) discusses the importance of advocacy and service organizations continuing to support these families throughout the pandemic.
- Manning et al. (2020) also acknowledges that families’ needs may change throughout the pandemic. They are interested in future research in this area that covers a broader population.