Stigmatization among parents of autism spectrum disorder children in Riyadh, Saudi Arabia

Children diagnosed with autism spectrum disorder (ASD) have social and cognitive disabilities. For parents, these behaviors can lead to humiliation, social exclusion, and isolation. Stigma is a problem that not only may affect the individual with high functioning autism, but has the potential to extend to their family as well. Indeed, research indicates that the parents of children with disabilities (including ASD) commonly experience stigmatizing reactions from others.

To determine the prevalence of self and enacted stigma among parents of ASD children from Riyadh, Saudi Arabia, and recognize possible risk factors and causes of stigmatization.

An observational cross-sectional study involving the parents of ASD children from Riyadh, Saudi Arabia. About 163 participants were included from the Centre for Autism Research (CFAR) at King Faisal Specialist Hospital & Research Centre (KFSH & RC) in Riyadh. The primary material used for data collection was a five-point scale questionnaire developed by the investigator. The questionnaire consisted closed ended questions related to the participants' demographic data, autistic child, family life, resources, and social experiences as a parent. The collected data were analyzed using descriptive statistics and appropriate statistical analysis, using Statistical package for the social sciences (SPSS), version 22. The level of significance was P value < .05.

The findings of this work indicated that 55 (33.7%) of the parents scored more than 3 in answering questions related to felt stigma; 82 (50.3%) were fathers. On the other hand, 108 (66.3%) did not feel stigmatized being a parent of autistic child. Forty-two (25.8%) of the parents scored more than 3 in answering questions related to enacted stigma, whereas 121 (74.2%) did not face enacted stigmatization being a parent of autistic child. There was a strong tendency for mothers (41, 75%) to feel more self- and enacted stigmatized than fathers (P < .05). Moreover, the gender of the autistic child, consanguinity, severity of the ASD, and the monthly income of the family showed no significant difference in the parents who scored more than 3 for felt- or enacted stigmatization (P > .05).

Among participated parents of children with ASD in Riyadh, Saudi Arabia, 33.7% of them experienced stigmatization, and mothers felt more self- and enacted stigmatized when compared to fathers. Public awareness among people in Saudi Arabia have been increased and, thus, negative stigmatization has decreased among parents in the country. A high level of felt stigma suggests the need for psychological intervention for the family to help cope with this new situation. A higher level of enacted stigma suggests the need for their rights (individuals with ASD) and increased awareness in the society. It is recommended that further research is needed in different centers in Riyadh and other regions of Saudi Arabia to investigate the prevalence of stigma in parents of autistic children.