Maltese and Gozitan parents request more professional support during their children’s autism diagnosis process

Abstract

Services for children within the Autism Spectrum in Malta have been improving. One recent new development has been the screening for autism of all 18-month-olds. However, there is a continuing need for monitoring how families are being served. This study explored Maltese and Gozitan parents’ experiences of the journey toward and following their child’s diagnosis within the autism spectrum. The study adopted a qualitative approach. Semi-structured interviews were conducted with three Maltese and three Gozitan families whose children had been diagnosed in the previous five years. Three main themes were identified through reflexive thematic analysis of the data: Firstly, it was found that the parents had a hard time struggling to understand and accept their child’s diagnosis, all being shocked and saddened by the diagnosis, although the experience was extenuated by the different parents' expectations and how the diagnosis was delivered. Secondly, parents felt a lack of emotional support during and after the diagnosis which they mainly found in sharing the challenge with other parents of children with autism. And finally, while all parents called for improvement of services and societal acceptance, Gozitan parents reported specific difficulties

in obtaining support and suffered from stigma. The study highlights the importance of early screening and intervention together with more professional guidance and support for parents.