The Lived Experience of Parents Raising a Child with Autism Spectrum Disorder: "Losing Your Way, Being on a Rollercoaster with Ups and Downs".

This study looked at what it's like for parents raising children with autism in Greece. Eight parents shared their experiences through interviews. The main finding was that parenting a child with autism feels like 'being on a rollercoaster with ups and downs.' Parents experienced loneliness, worry about the future, and had to make big life changes like stopping work. However, they also saw their children improve over time and became strong advocates for them.

This qualitative study explored the lived experiences of eight Greek parents raising children with autism spectrum disorder through semi-structured interviews. Using thematic analysis, researchers identified one core theme: 'losing your way, being on a rollercoaster with ups and downs,' encompassing five sub-themes including loneliness and social stigma, positive long-term development, advocacy roles, uncertainty about the future, and identity crisis. Parents reported significant challenges including social isolation, career disruptions, and ongoing stress, while also demonstrating resilience through problem-solving and advocacy for their children. Despite substantial difficulties, parents observed their children's progress over time, motivating continued efforts and adaptation.

Findings suggest need for comprehensive parent support addressing emotional wellbeing, social connection, and practical advocacy skills. Services should acknowledge the 'rollercoaster' nature of the journey while fostering hope through emphasis on children's long-term positive development and parental resilience building.

Small sample size of eight parents from single country (Greece) limits generalizability. Qualitative design provides rich detail but cannot establish broader prevalence of experiences. Cultural context may not translate to other populations, particularly Australian families.

Raising a child with Autism Spectrum Disorder (ASD) poses distinct challenges for the parents. The responsibilities that come with securing ongoing support are often described as daunting by them. Parents need support, guidance, and access to specialists to come to terms with the first diagnosis of ASD and to safely guide their child through the developmental stages into adulthood. To investigate the experiences of parents who are raising children diagnosed with ASD in Greece.

Semi-structured interviews were conducted with eight parents of children with ASD. Interviews were analyzed according to Braun and Clarke's thematic methodology. Qualitative analysis software program ATLAS.TI version 8 was used for data organization and analysis. Data analysis resulted in one core theme, as the participants experienced raising their child with ASD as "losing your way, being on a rollercoaster with ups and downs".

The core theme comprised of five sub-themes: (a) Experiencing loneliness, isolation, and social stigma, (b) Positive development in the long run and finding solutions to problems, (c) Advocating for their child, being the link, (d) Uncertainty, stress, fear for what the future holds, and (e) Losing themselves, identity crisis. The parents grappled with feelings of loneliness, isolation, and stigma. Engaging in social interactions with friends and extended family proved particularly challenging. Additionally, they made substantial life adjustments, including changing or even stopping their careers.

Nevertheless, despite their many challenges, the children progressed over time. This prompted the parents to devise solutions, be proactive and keep going, for the best interest of their child.