Planning for the Future: The Service and Care Needs for Adults with Autism Post Parental Care
Research has shown that the complex disabilities of autism persist across the life course (Hare et al., 2004). Adults with autism experience multiple challenges with communication, socialization, learning, self-help, independent living and adaptation to change (Happé and Charlton, 2012). Research has highlighted limitations in service provisions and availability for adults with autism with family members providing and maintaining supportive needs across the lifespan (Hare et al., 2004; Gerhardt and Lainer, 2011). The continuation of supportive services across the life course for individuals with autism is thought to be critical for their wellbeing. At some point in their lives most adults with autism are likely to experience the transition out of their parents’ care, requiring alternative residential and supportive services. There is a lack of research considering what future care service and support needs adults with autism will require to successfully manage this transition.
To explore from a holistic family perspective (adult with autism, parent carer and adult sibling) the service and support needs, family roles and relationships and long term care plans in families with an adult with autism.
This research builds on an earlier study that collected information on the characteristics and service use and needs of individuals with autism as they transitioned into adulthood. Stage one uses quantitative questionnaires to acquire a comprehensive view of the caregiver and the adult with autism’s mental and physical abilities, and to assess their needs and service use (n=100 families). Stage two uses face-to-face semi-structured individual interviews with a subsample (n= 30 families) to explore family relationships, role changes, concerns, preferences and future expectations for caregiving from three family member perspectives (adult with autism, parent carer and adult sibling). Furthermore, a comparative analysis of two cohorts of older caregivers (55-64 and 65 or over) may highlight disparities in historical and social experiences and provide insight into the differences and similarities in service needs and future care planning for an adult family member with autism.
Adults with autism have high levels of unmet service needs. Parent caregivers, adults with autism and their siblings all worry about the future. Preliminary data records fears of change, wellbeing and isolation, and concerns of high exploitation risks, limited daily living skills and social interactions. A lack of knowledge about options and availability of services appears greater among older parent caregivers. Future care plans seemed to be largely informal agreements with siblings assuming a variety of roles.
This study begins a dialogue of acceptance of this transitional eventuality and the benefits of future care planning to create a secure future in which the health, housing and social care needs of an adult with autism are considered and designed to ensure their continuity of wellbeing. Adults with autism and their families require more care and supportive services, and information to assist them in future planning.
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