The Experience of Parenting an Adolescent with Autism

Painting the vortex: The existential structure of the experience of parenting a child with autism

“…In fairness to Fong et al (11) phenomenology alone as a tool of course is not enough to answer such a question. Heidegger was strictly a philosopher and as such he was primarily concerned with the question of being as opposed to the nature of Beings (12): He was no humanist who pursued the goal to improve humanity (2).…”

“…The only other identified study that utilised a phenomenological approach was undertaken by Fong, Wilgosh and Sobsey (11) in which they explored the experience of parenting an adolescent of the age 13-15 years with autism. Six interrelated themes were identified which were: concerns about behaviour; concerns about social skills and communication; concerns related to the effect on the family opportunities and effect on siblings; concerns about education services availability and choice; relationship issues with professionals and worry about future independence.…”

Trajectory of development in adolescents and adults with autism

“…Chief concerns of families during adolescence include challenging behaviors, social and communication skills, restrictions in family activities due to caregiving demands, management of school and related services, and worries about the future independence of their son or daughter with autism [Fong et al, 1993]. There is some evidence indicating that psychological distress increases during adolescence among parents of children with autism [Bristol and Schopler, 1983;Harris, 1984;Marcus, 1984;Koegel et al, 1992].…”

The Teacch Approach to Autism Spectrum Disorders

“…Interviews with parents of adolescents with autism in Alberta, Canada (Fong, Wilgosh, & Sobsey, 1993) yielded six areas of common concern: 1) difficult behaviors, including "temper tantrums and aggressive, self-abusive, destructive, obsessive, ritualistic, impulsive, and self-stimulatory behaviors" (p. 108); 2) limited social skills and judgment that often resulted in being teased or rejected; 3) the effect of the youngster with autism on the family, such as financial strains and the need to provided "constant supervision and assistance with daily living skills" (p. 109); 4) the problems associated with school and related services; 5) stressful experiences with professionals; and 6) worries about the future, including living arrangements and sexuality. These families reported benefiting greatly from the support of their spouses, other families and friends, and their employers.…”