The experience of developmentally healthy adolescents and youths who have a sibling diagnosed with an ASD

Young people aged 12-24 years who:
* have NOT been diagnosed with an intellectual disability or an autism spectrum disorder;
* have at least one sibling (of any age) who has been formally diagnosed with Autism, Asperger’s syndrome or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS);
* have mothers/female guardians willing to also participate in the study.

Living with children who have been diagnosed with an autism spectrum disorder presents unique experiences for all family members. The aim of the study is to find out what it is like to be the brother or sister of a person who has been diagnosed with an autism spectrum disorder. Young people will be asked to fill out three questionnaires about their family functioning, themselves and their mental health and emotional wellbeing. Mothers/female guardians will be asked to complete the same questionnaires. This should take about 20-35 minutes. Following this the young person and his/her mother/female guardian may be asked to do a short interview. The interviews will be done separately and should last less than an hour each. Participants may choose not to do the interview.

Young people will be able to reflect on their experiences as siblings of individuals diagnosed with an autism spectrum disorder. Participants will have an opportunity to discuss concerns and opportunities associated with growing up with a child diagnosed with autism. Should young people report significant distress they will be assisted in finding support services, which will contribute towards better overall wellbeing. Similarly, mothers will be able to reflect on the experiences of their children as siblings of individuals diagnosed with autism. If mothers report significant concerns about their adolescents/youths’ wellbeing they will be assisted in finding support services for their children and/or themselves.

If you would like further information, have any questions or would like to participate contact Jessica Michel jmichel@our.ecu.edu.au