Understanding Concerns Relating to Uncertainty about the Future in Adults on the Autism Spectrum and Their Families.

Background:  Little is known about the everyday lives of adults on the autism spectrum. Small scale projects indicate that anxiety related to uncertainty is a significant problem for many individuals on the autism spectrum and their families, though no systematic large-scale research has explored the specific nature and impact of these concerns.

Objectives: The aim of this project was to consult with adults on the autism spectrum and their carers/relatives about concerns regarding uncertainty about the future.

Methods:

• Four focus groups were conducted with adults on the autism spectrum (n=23), exploring concerns and hopes for the future. Participants also discussed strategies that were helpful and unhelpful in managing these concerns.
• An online survey investigating concerns relatives/carers had regarding the future for the adults with autism they were supporting, was completed by 120 family members. Seven main topics were explored; residence, day-to-day living, future happiness, finances, relationships with others, support and vulnerability from others. Respondents also completed questionnaires relating to their own wellbeing; Depression, Anxiety and Stress Scale (DASS-21) and Penn State Worry Questionnaire (PSWQ), as well as a Quality of Life Scale relating to the autistic adults they were supporting.

Results:

• Focus groups: Thematic analysis revealed an overarching theme relating to pervasive feelings of ‘uncertainty’. Subordinate themes included uncertainty related to the impact of autism diagnosis, regarding specific barriers and understanding from others and uncertainty related to provision of support.
• Online survey: 64% of respondents stated their autistic relative was “not at all prepared” for the future and 70% worried about this at least weekly. The most endorsed concerns were “whether they will be happy” (72% worried weekly) and “who will look after/care for them” (58% worried weekly). Relatives self-reported moderate levels of worry and anxiety, mild levels of depression and stress and high levels of intolerance of uncertainty. Respondents indicated that 83% of the adults with autism they were supporting experienced anxiety, 47% experienced depression. Respondents who stated their autistic relative was “not at all prepared” for the future had significantly higher levels of worry, anxiety, stress and lower quality of life than those who reported some degree of preparation.

Conclusions: This is the first study to explore concerns regarding the future directly with autistic adults and their families. The results indicate that uncertainty about the future is a significant issue in the lives of autistic adults and those supporting them. Both groups of participants viewed the future as very uncertain, reported feeling unprepared and unsure about how to prepare for the future. Furthermore, high anxiety, worry and stress and lower quality of life in relatives of autistic adults were associated with lack of preparation for the future. Adults on the spectrum and family members identified that support in preparing for the future was inadequate or insufficient for their needs. Further research exploring the impact that uncertainty about the future has on the mental health and wellbeing of adults on the autistic spectrum and those supporting them should be a priority for the future.