The health and social care needs of family carers supporting adults with autistic spectrum disorders.

Julian and colleagues talked with families who care for adults with autism. They used open interviews to learn what help these families need and how they feel.

The study looked only at adults, not children. Parents shared stories about daily life and gaps in services.

Families said they feel high stress and sadness. They also said adult services are hard to find or do not fit their needs.

The main message: once a child with autism turns 18, support drops off and carers feel left alone.

Eussen et al. (2016) asked 130 parents the same questions with a survey. They found that carers who make future plans and join community groups feel more satisfied and less burdened. This extends Julian’s work by showing concrete actions that ease stress.

Dudley et al. (2019) looked at where adults live. Adults who live with family get fewer services than those who live away. This explains why Julian’s carers feel lost: low service use starts with the adult still at home.

Sticinski et al. (2022) focused on single carers of teens and adults. They report even less social support than partnered carers. Julian’s broad distress picture becomes sharper: single parents are a highest-risk group.

If you serve adults with ASD, ask carers about future plans, community links, and living setup. Link single carers to parent groups. Schedule extra check-ins after the 18th birthday when child services end. Small steps can cut the distress Julian first described.