The Types and Rates of Stigma Experienced By Parents and Carers of Children with Autism Spectrum Disorder (ASD) or 22q11.2 Deletion Syndrome (22q11DS) and Aggression: A Systematic Review.

Background: Young people with a neurodevelopmental disorder are three to four times more likely to experience psychological disorders (particularly anxiety and mood disorders) than those in the general population. Challenging behaviours often co-occur in children with neurodevelopmental disorders. The most common behavioural challenge for young people with neurodevelopmental disorders, their families and their service providers, is aggression. Research has shown that up to 68% of young people with a neurodevelopmental disorder display aggressive behaviours. Aggression can cause social isolation and low quality of life for the individual and can have significant ramifications for family members and carers.

Objectives: This systematic review was interested in gaining an insight into how much is currently understood about the impact a child with a neurodevelopmental disorder, who behaves aggressively, has on parents and carers. In particular, the purpose was to identify what the available literature shows about the types and rates of stigma experienced by parents and carers of children with autism spectrum disorder (ASD) or 22q11 Deletion Syndrome (22q11DS), with aggression.

Methods: In accordance with the PRISMA guidelines, six databases were searched and studies were systematically screened against scheduled inclusion criteria. 23 articles met the inclusion criteria. Of these, 15 were included in an analysis of the rates and types of stigma experienced by parents and carers of children with ASD or 22q11DS, with aggression. A grey literature search was also conducted resulting in two additional articles.

Results: The analysis showed that stigma was identified within the ASD cohort; however, it was rarely specified in the title or abstract. Further scrutiny of the results and conclusion sections in the full texts was required to identify stigma. We found that stigma was often discussed in terms of judgement or isolation. Most commonly, public stigma and self-stigma were experienced. There were no results for the 22q11DS cohort.

Conclusions: Findings demonstrate that parents and carers raising a child with ASD, who is aggressive, experience stigma on a regular basis and would benefit from more understanding from professionals such as teachers, clinicians, medical staff, politicians and policy makers, as well as from the public. The structure of the options currently offered by the education system also presented significant challenges for these families. Further research is needed to gain a greater understanding of the experience of stigma within ASD cohorts as well as the unexplored phenomenon of stigma associated with 22q11DS and aggression. A theoretical framework has been developed to assist in the underpinning of future research.