A Systematic Review of the Stigma Experienced by People with Autism Spectrum Disorder Associated with Intellectual Disabilities and by Their Family Caregivers.

ABSTRACT

The purpose of this paper was to explore the social stigma experienced by individuals diagnosed with ASD+ID, and to identify knowledge gaps for future studies by conducting a systematic review of peer-reviewed literature. In this systematic review, we included 12 studies exploring the experience of stigma among people with ASD+ID and/or their caregivers. Our aim was to better understand this experience, but also to explore the strategies used to cope with stigma in this population. Our results confirmed that people with ASD+ID and their caregivers experience at least low to moderate levels of stigma, and that this experience is modulated by internal and external factors (such as parental age, mindfulness traits, ASD symptoms…). In addition, our results show the impact of stigma on community integration, psychological well-being and help-seeking behaviour. The role of family, friends and professional support, as well as the formation of networks to share information, appear in our results to be protective factors against stigma. To our knowledge, this study is the first systematic review to examine the stigmatisation of people with ASD+ID and/or their caregivers. Further research is needed to understand the perspective of people with ASD+ID themselves and to explore other factors that modulate this experience, in particular gender and ethnicity.