Related Experiment Video
Updated: Jan 6, 2026
A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
The Lived Experience of Parents Raising a Child with Autism Spectrum Disorder: "Losing Your Way, Being on a
Efthalia Tsagkli1, Ioanna Prasini2, Evdokia Missouridou2
1University of West Attica, Athens, Greece.
Insights
Parents raising children with Autism Spectrum Disorder (ASD) face significant challenges, including isolation and career changes. Despite these difficulties, they adapt and advocate for their children, finding solutions amidst uncertainty.
Area of Science:
- Child Psychology
- Developmental Disorders
- Parenting Studies
Background:
- Raising a child with Autism Spectrum Disorder (ASD) presents unique challenges for parents.
- Parents require support and guidance to navigate diagnosis and developmental stages.
- Securing ongoing support for children with ASD is often perceived as daunting.
Purpose of the Study:
- To investigate the lived experiences of parents raising children diagnosed with ASD in Greece.
- To understand the parental journey from diagnosis through to adulthood.
- To identify the key challenges and coping mechanisms employed by parents of children with ASD.
Main Methods:
- Semi-structured interviews were conducted with eight parents of children with ASD.
- Thematic analysis methodology, as described by Braun and Clarke, was employed.
- Data organization and analysis were facilitated by ATLAS.TI version 8 software.
Main Results:
- A core theme emerged: parents perceived raising a child with ASD as "losing your way, being on a rollercoaster with ups and downs."
- Sub-themes included: experiencing loneliness, social stigma, advocating for the child, uncertainty about the future, and identity crisis.
- Parents reported significant life adjustments, including career changes, to support their children.
Conclusions:
- Parents of children with ASD experience profound loneliness, isolation, and social stigma.
- Despite challenges, parental advocacy and problem-solving skills contribute to child development.
- Parents adapt by making life adjustments and remaining proactive for their child's well-being.
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.
More Related Videos
Related Concept Videos
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:26Modeling in Therapy
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
01:28Relationship with Parents: Attachment
01:18Sources of Self-Esteem I: Family Experience
01:27Parenting Styles
Authoritarian Parenting
This style is strict and controlling, with little room for open dialogue. Authoritarian parents demand obedience and often enforce rules with minimal warmth. Children raised this way may lack social skills and initiative, usually comparing themselves to others unfavorably.
Authoritative...
01:23Influence of Parents and Peers on Identity
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth....