Identifying autistic children: Priorities for research arising from a systematic review of parents’ experiences of the assessment process

Abstract

Our goal was to systematically identify, appraise and synthesise the qualitative research on parents’ experiences of the autism assessment process. The empirical studies were quality appraised using the Critical Appraisal Skills Programme tool. We synthesised the data using a meta-synthesis approach. Parents’ experiences were categorised into four phases namely: the pre-identification phase, the identification process, emotional reactions to the identification of the children as autistic and the post-identification phase. Informed by the social and human rights discourse on disability, we provide recommendations for future research, respecting the rights of all concerned. We discuss the implications of this review for future research into the autism assessment process. Parents consistently mentioned the importance of professional communication and we make recommendations for research on parent–professional partnerships. Given the sensitivities of the issues, we draw attention to ethical considerations when conducting research on the autism assessment process. Finally, we address the strategies that professionals can adopt in applying neurodiversity-affirmative approaches when identifying autistic children and supporting their parents. Lay Abstract Hearing about parents’ experiences of having their child recognised as autistic could help improve the supports offered to parents. Our article may also help guide future research on this topic. We made a list of the type of research that interested us. We searched the studies already completed, only studying the research that matched our interests. After reading the studies, we rated their quality using the Critical Appraisal Skills Programme tool. It became clear that parents went through four phases during the identification process. The first phase occurred before their child was identified as autistic. The second involved the actual assessment of their child. Parents’ emotional reactions to the news were the focus of the third phase. The final phase occurred after their child was identified as autistic. We discuss the findings of our research. As there are sensitivities involved in conducting research on this topic, we identify how researchers can ensure that their research is of the best quality. We are committed to respecting the human rights of all involved, so we emphasise the need for professionals to develop good relationships with the parents of autistic children. Researchers have recently come to see autism as typical of human diversity. We encourage the professionals involved to adopt this understanding of autistic children and make practical suggestions to enable them to do so.