I’m pleased to share that the research I published with Elizabeth Milne and Andrew Thompson in 2020 has now been cited more than 300 times. It’s lovely to see the work continuing to be useful, particularly as researchers develop and test ways of helping autistic people who experience anxiety.
Our paper, published in the journal Autism, explored the relationship between anxiety and something called “intolerance of uncertainty”. The term describes how difficult or distressing it can feel when we don’t know what will happen. You can read the original paper here.
For someone who finds uncertainty particularly difficult, a change of plan or an unfamiliar situation can bring considerable anxiety. Understanding that experience gives us a more useful starting point for support.
What did our research contribute?
We brought together findings from 12 studies in a systematic review and meta-analysis. Taken together, the evidence showed a strong relationship between difficulty coping with uncertainty and anxiety in autistic people.
The review helped strengthen the case for paying closer attention to uncertainty when understanding and treating anxiety. It also highlighted an important question: could helping autistic people manage uncertainty reduce the anxiety they experience?
Our study couldn’t answer that treatment question on its own. It brought existing evidence together and identified a promising direction for further work. Seeing that direction being explored in practical interventions has been particularly encouraging.
From research to practical support
One example is Coping with Uncertainty in Everyday Situations (CUES), developed by Jacqui Rodgers and colleagues. This programme works with parents to help them support their autistic children with uncertain situations in everyday life.
CUES was already being developed before our review. Our contribution has been to the wider evidence supporting this approach, and subsequent CUES research cites our findings. A UK feasibility trial involving parents of 50 autistic children found the programme feasible to deliver and acceptable to families, supporting further evaluation.
More recently, a randomised controlled trial of CUES-Junior, first published online in 2025, involved 64 autistic children aged four to seven. Compared with a waiting-list group, children whose parents received the programme were more likely to show clinically meaningful improvements in their responses to uncertainty and its impact on family life.
Parents also reported improvements in children’s anxiety at the two-month follow-up compared with before treatment, although that follow-up did not include a control-group comparison. These are encouraging findings, with larger studies and longer follow-up needed to establish how widely and durably the benefits apply.
Why this matters
For me, the value of this work is in the possibility of making everyday life less distressing. It supports a more specific understanding of what someone is finding difficult, and offers a practical focus for help.
My view is that this support should sit alongside respect for autistic people’s needs, including clear communication, appropriate predictability and sensory adjustments. The aim should be to help each person feel safer and more able to do the things that matter to them, at a manageable pace.
Research develops through the contributions of many people, including the autistic people and families who take part. I’m grateful to have contributed to this growing understanding, and pleased to see it informing work with the potential to make a meaningful difference.
Dr Richard Jenkinson, Clinical Psychologist, Verdure Psychology