Beyond Childhood

Abstract

newlineThis phenomenological study attempts to understand the experiences of adults with autism newline and their parents. In-depth interviews and observations with the adults with autism and their newline primary caretakers were carried out in the cities of Mumbai and Bangalore through purposive newline sampling, in alignment with the ethics of research. The findings revealed the limits of newline functioning with ASD and the ways in which the adults with ASD transcended them to newline manifest their strengths and resilience in being able to deal with them on an everyday basis. newline Their parents contributed to this resilience and strength. Some symptoms of ASD reduced newline over the years and their communication improved. Co-morbid academic difficulties and some newline core symptoms of ASD were roadblocks in pursuing higher education. Proactive parent newline support, supportive educational institutes and workplaces enhanced occupational outputs. newline Parents changed their career goals and found meaning in the new ones. Most of the newline participants were independent in daily living activities. Sensory difficulties, speech and newline intellectual impairments limited their independence. Most adults with ASD had an active newline health care routine. Parents suffered from some age, genetic and stress related ailments. newline Participants with ASD showed attachment to family members in atypical ways. Siblings of newline persons with ASD experienced difficulties in finding life partners due to genetic and care- newline taking implications related to ASD. Most parents did long term, financial, residential and newline caretaker planning. Unmet needs of parents were associated with core symptoms of ASD and newline inability to find services and respite. Participant s current functioning and the plans made for newline their future was the sum effect of their ASD symptoms, their cognitive abilities and the efforts newline of people who surrounded them. The study shows that ASD is also a collection of abilities and newline characteristics which bring uniqueness to relationships and value to workplace. The newline importance of parent support groups and inclusiveness in schools and workplaces is indicated. newline When the adult with ASD uses his or her strength to transcend limitations it broadens the newline scope for practice and policy, especially in contexts where ASD is misunderstood.