Uncertain Futures

Carer and adult with autismProject Area: Adults in later life

Lead Researcher: Dr Jacqui Rodgers

Institution: Newcastle University; Northumberland, Tyne and Wear NHS Trust; Scottish Autism; Research Autism

Status: Completed 


Anxiety related to uncertainty about the future is a very real and significant concern for many individuals on the autism spectrum and their families. Many parents and carers will have increased concerns about what the future will hold for the individual on the autism spectrum they support or care for, once they die or are no longer able to provide the level of support previously given.

Difficulty tolerating uncertainty about the future has been identified as a major contributor to the development and maintenance of anxiety disorders. Previous research has found that many family members of adults on the autism spectrum experience mental health difficulties and individuals on the autism spectrum are also more likely to experience difficulties with anxiety.

The aims of this research are to find out more about the nature of the worries adults on the autism spectrum and their family members might have about the future in order to identify priorities for future research and inform service provision.

Likely impact:

This research may help us to find out how we may be able to provide appropriate support to increase wellbeing in individuals on the autism spectrum and their carers.

Phase One

Phase One of the Research is now complete. Four focus groups were conducted with 23 adults on the autism spectrum and an Online Survey was completed by 120 family members of adults on the autism spectrum.

The focus groups included discussions about worries and concerns regarding the future. But also what might be helpful in order to help them prepare for the future. Some of the results are below:

What might help autistic adults to be better prepared for the future?

  • Adults on the autism spectrum stated that APPROPRIATE SUPPORT was most important in helping them to manage their worries about the future including support from family, friends and professionals. Adults stated this support was best when it was autism specific, and individualised.
  • Adults also stated a clear supported structure to help with problem solving in relation to future concerns and challenges would be very helpful. This would include breaking issues down into manageable steps and tackling challenges step-by-step.
  • Some adults had previously found participation in therapy extremely helpful and suggested that ongoing access to therapy to deal specifically with future concerns may be useful.
  • Having an outlet for concerns such as writing things down or confiding in supportive others was also identified as a process that would be helpful in alleviating future related anxiety.

The online survey also investigated worries and concerns about the future for their autistic relative and what kind of things they hoped for their future. Some of the findings are below:

  • 77% of family members worried weekly that the needs of their relative on the autism spectrum will not be met in the future.
  • 72% of family members worried weekly whether their relative on the autism spectrum would be happy in the future.
  • 58% of family members worried weekly about who would care for their relative on the autism spectrum in the future, when they were no longer able to support them.
  • Relatives self-reported on average, moderate levels of worry (47%) and anxiety (37%), mild levels of depression (23%) and stress (21%) and high levels of intolerance of uncertainty (28%).
  • Family members expressed the importance of appropriate, tailored support to be in place for their relative in the future. This included practical support in terms of housing, employment and finances but also emotional support.

More information about these studies can be found in the Executive Summary  (PDF document)

This research highlighted the need for better support and services for adults on the autism spectrum and their family members. Adults on the autism spectrum stated that a drop-in support service which could offer practical help as well as support regarding employment, finances and independent living, across their lifespan would be most helpful. The findings also emphasised the importance of professionals and the public having a thorough understanding of autism in order to best support these adults and their families. Future research should investigate specific strategies which would support adults on the autism spectrum and their families across the lifespan.

 Phase 2:

Phase 2 of the research is now complete. Four adults on the autism spectrum took part in an 8 week cognitive behavioural therapy intervention targeting uncertainty and anxiety related to this and a follow-up interview. The intervention programme was called Coping with Uncertainty in Everyday Situations – Adult (CUES-A©) and was adapted from a previously successful intervention with parents of children on the autism spectrum.

Engagement and retention of participants was excellent at 100%. The results showed some improvements in tolerance and management of uncertainty. There were also reductions in scores on questionnaires measuring depression, anxiety, stress, intolerance of uncertainty and restricted and repetitive behaviours. In our feedback sessions, participants said they valued:

  • The experience and process of therapy
  • Practical strategies and psycho-education
  • Individualisation of the sessions
  • Collaborative approach

Following on from this research, we devised some leaflets to help access and engagement in therapy services for adults on the autism spectrum and their therapists. These can be found here

Future research should look to replicate these findings with a larger population of adults on the autism spectrum.

Related Publications

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17 Jan 2019