A lack of autonomy is especially prevalent in autism compared with other developmental conditions such as Down syndrome (Esbensen et al., 2010). While more profoundly affected adults may gain a residential placement, many autistic adults continue to live with their parents.
Since adult-focused services are very sparsely available, parents and/or other family members typically find themselves with multiple responsibilities, ranging from everyday care to negotiating benefits and seeking employment opportunities for their autistic family member. Even the most able autistic adult is likely to struggle with tasks such as form-filling. A family will need to deal with such administrative tasks, as well as acting as advocate in relation to officialdom. Parents may find themselves torn between caring for their own ageing parents and their adult child. As time passes, parents themselves are likely to become less able to care. This may then impact on siblings, who by this time may have children of their own.
You will learn more about the situation of autistic adults in Week 7.