Quality of life in families with a transition aged young adult on the autism spectrum

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Towson University. Department of Occupational Therapy and Occupational Science


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The purpose of this study was to describe family quality of life (FQOL) from the perspective of families with youth on the autism spectrum at or nearing the age of transition from school to adulthood. A qualitative phenomenology approach was used. Participants included ten families made up of six mothers, two fathers, and two grandmothers. The primary form of data collection was two in- depth interviews. Observations and field notes supplemented interview data, and previously administered Maryland Autism Services Surveys (MASS) were examined to contribute to the triangulation of the data. Trustworthiness of the data was enhanced by the presence of a second researcher during data collection and analysis, peer debriefing, and member checking. Another purpose of this study was to explore sensory processing in these transition aged youth, and to investigate the influence of sensory processing difficulties on family life. This was explored through the interviews, and through administration of the Adolescent/ Adult Sensory Profile, which was filled out by the family members. Results of the qualitative study revealed three themes that describe FQOL from the participants' perspectives: changes associated with puberty and associated disorders that manifest or worsen during puberty affect autism and challenge quality of life; occupations are influenced and restricted when there is a family member on the autism spectrum; and the onus of responsibility for transition falls on the family. The investigation into sensory processing in young adults revealed the existence of difficulties in sensory processing, with trends noted in the types of difficulties seen in these young adults. Sensory processing influenced FQOL, with families modifying activities to accommodate their young adult's sensory needs. Implications of these results for the study of occupation and for the practice of occupational therapy are discussed.