<p>Experiences Of Immigrant Parents In Sweden Participating In A Community Assessment And Intervention Program For Preschool Children With Autism</p>

Abstract

BackgroundBarriers inherent in service systems for autism can hinder parents from getting help for their children, and this is probably especially true for immigrant parents. In order to provide accessible assessment and interventions for preschool children with autism, a multidisciplinary team was established in one district of a Swedish city, with a majority population of immigrants.AimThe aim of the present study was to gain knowledge of the parents' experiences of participating in the community assessment and intervention program.Methods and proceduresA qualitative study with semi-structured interviews was conducted with parents of 11 children aged 3–5, who had been diagnosed with autism and participated in the community intervention program for at least 1 year. The interviews were recorded and transcribed verbatim, and data were analyzed following a phenomenological hermeneutical method.ResultsThe overall meaning of the parents' narratives was interpreted as “A new way of understanding my child made life more hopeful and more challenging than before”. Their experience was interpreted as a process, captured in the three main themes: ”An overwhelming diagnosis”, “Cooperating with the team”, and “Growing as a parent”.ConclusionAs lacking knowledge of available resources and support seems to be an important barrier to access services, the results underscore the importance of providing individually tailored services including comprehensive societal support to immigrant families with young children suffering from autism. The study also highlights the importance of addressing the parents' previous awareness and knowledge of autism early in the assessment process, as well as continually involving parents in the intervention program, and this may enhance parental growth.

A High Prevalence of Autism Spectrum Disorder in Preschool Children in an Immigrant, Multiethnic Population in Sweden: Challenges for Health Care

“…Vivanti et al ( 2018 , 2014 ) have emphasized the importance of understanding and taking into account the child’s characteristics as well as the family’s priorities/expectations, needs, and life situation in the selection of treatment objectives and treatment strategies. The importance of individually tailored interventions pursuant to the child’s needs as well as the parent’s resources and life situation, has been highlighted in a study by Nilses et al ( 2019 ) from our research group.…”

Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

“…During the last decade, there has been an interest in looking at the unique diagnostic experiences of specific subgroups of parents and their children, including research focused on the experience of parents of girls with ASD (Rabbitte et al 2017), (Wiley et al 2014). Also, experiences of fathers of children with ASD (Hannon and Hannon 2017;Potter 2017), African American parents in the USA (Lovelace et al 2018;Pearson and Meadan 2018), Latino parents in the USA (Lopez et al 2018;Zuckerman et al 2014Zuckerman et al , 2017, immigrant families (Nilses et al 2019;Rivard et al 2019;Sakai et al 2019), and military families (Cramm et al 2019) have been studied.…”

Examining factors related to the age of diagnosis of children with autism spectrum disorder from immigrant and non‐immigrant backgrounds in a diverse clinical sample

“…Immigrant families of children with ASD have reported that understanding the complex systems and medical terminology often resulted in delays in accessing the needed services for an evaluation (Habib et al, 2017; Jegatheesan et al, 2010; Khanlou et al, 2014; Wang & Casillas, 2013). Families found it unclear how services were connected or where they should start their journey for answers (Nilses et al, 2019; Rivard et al, 2019). This was often exacerbated by the distance between services and the lack of communication between various providers.…”