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

INTRODUCTION

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.

AIM: To investigate the experiences of parents who are raising children diagnosed with ASD in Greece.

METHODS

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.

FINDINGS: 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.

CONCLUSIONS

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.