"It's a learning curve throughout your entire life": Experiences and impact of FASD in adolescence explored in online photovoice research.
Teens with FASD say, "Teach me how to speak up for myself at school."
01Research in Context
What this study did
Eodanable et al. (2024) asked teens with FASD to take photos and talk about school and home life.
The team met the teens online. Pictures and stories became the data.
Goal: let adolescents show, in their own way, what having FASD feels like.
What they found
The teens said they often do not understand why they get extra help or discipline.
They want someone to teach them how to speak up for themselves at school.
Without these skills, they feel left out and unsure how to ask for what they need.
How this fits with other research
Cage et al. (2024) used the same photo method with autistic adults and also heard stories of feeling lost after diagnosis. Both studies show people want clear next steps, not just labels.
Chandroo et al. (2018) reviewed 15 studies and found students with ASD rarely speak in their own transition meetings. Miranda's FASD teens echo that gap: they need explicit self-advocacy lessons.
Lotfizadeh et al. (2020) showed autistic adolescents feel "different" when schools ignore their views. Miranda adds that teens with FASD face the same barrier and want the same fix—being taught to self-advocate.
Why it matters
If you write IEPs or behavior plans for students with FASD, build in self-advocacy goals. Teach the student to state needed accommodations, not just receive them. A simple script or visual prompt at the start of each class can turn the teen into an active partner instead of a passive observer.
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02At a glance
03Original abstract
BACKGROUND: Research into the lived experience and disability of Fetal Alcohol Spectrum Disorder (FASD) is sparse in adolescence, despite its relevance to supports and life outcomes. AIMS: The study explored adolescents' lived experiences of FASD and access to support across home, school, and community. METHODS AND PROCEDURES: An online photovoice study was undertaken with eight young people (age 12-19, in education), integrating an Interpretative Phenomenological Analysis (IPA) approach. The research process comprised two individual interviews, group training, individual photo-taking, and group sessions for photo analysis/ dissemination. OUTCOMES AND RESULTS: Participant-led analysis of their photos identified how activities at home and in the community had functions of relaxation, sensory gratification, and enabled concentration. Researcher-led analysis found that young people identified with the disability of FASD through experiences at home and school. While they acknowledged the value of support and relationships, education was not always an inclusive experience. CONCLUSIONS AND IMPLICATIONS: Participatory online research allowed insight into the impact of FASD as a disability and underlines a consistent need for support in adolescence and the transition into adulthood. Young people with FASD require explicit support to develop their advocacy skills to improve educational outcomes.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104676