Experiences & Views of Individuals with Fetal Alcohol Spectrum Disorder: A New Zealand Approach

Minimal research has been conducted on giving a ‘voice’ to individuals with a disability and especially those neurodevelopmentally disabled by foetal alcohol spectrum disorder (FASD). This is because in the past, people with learning disabilities have been deemed unworthy or incapable of participating in research (Kroll et al, 2005). What literature there is from this aspect tends to focus on either the ‘lived experience’ of the biological mothers of the disabled offspring (Salmon, 2008) or the ‘lived experience’ of foster-parents or caregivers raising an individual with this condition Symes (2004). However, it is important to understand that adults cannot speak for disabled children, youth and their siblings as their views and priorities are frequently dissimilar in subtle but important ways (Kroll et al, 2005). So, in order to understand foetal alcohol spectrum disorder, those individuals coping with the disability should be listened to as they describe the phenomena as they experience it. Only then will policymakers and government health agencies acknowledge the significant negative health impact and daily stressors that such a disability places on those affected. A person who has FASD is disabled in many cognitive areas on a daily basis, generally suffering a reduced standard of living and quality of life. Within society, these people are misunderstood, stigmatised, oppressed, marginalised and viewed as being different. These issues persist throughout the individual’s life, creating many stressors for the individual in daily living. Therefore, a need exists to explore and understand FASD through the experiences of those who have been diagnosed with the disability.