SLPSystematic ReviewJournal of autism and developmental disorders2019

Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health.

Chris Papadopoulos, Annemarie Lodder, Georgina Constantinou and 1 others

PMID 30569408

WHAT IT FOUND

Across twelve studies, autism stigma was consistently linked to depression, anxiety and poor wellbeing in caregivers.

Rejection from family and friends hurt more than public judgement. Mindfulness and self-compassion buffered these effects.

Key findings

01All twelve included studies found evidence of a harmful relationship between stigma and mental health in informal caregivers.

02Rejection from family and friends caused a more significant emotional impact on caregivers than rejection from the wider public, often leading to social withdrawal.

03Trait mindfulness and self-compassion were found to moderate the relationship between stigma and caregiver mental health, reducing the negative impact.

STILL TO COME

How it was doneWhat they foundWhat it means for SLPs

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What it does not show

All quantitative studies used non-random sampling, so the results may not apply to all caregiver populations. The review included only English and Dutch language papers, which may have missed relevant research. Most studies focused on parents of young children, so findings may not apply to caregivers of adults or other relative types like grandparents. The lead researcher is a father of an autistic child, which may have influenced the interpretation of the findings despite efforts to mitigate bias. No studies examined the impact of comorbidities like fragile X syndrome or epilepsy on the relationship between stigma and mental health.

The easy way to misread this

Do not interpret the consistent association between stigma and poor mental health as proof that reducing stigma will automatically improve caregiver wellbeing. The included studies were cross-sectional or qualitative, so they show a link but do not prove that changing stigma causes a change in mental health.

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