Personalised anxiety treatment for autism - the PAT-A Trial
Research type
Research Study
Full title
Exploring the effectiveness of personalised non-pharmacological anxiety treatment for autistic adults and older people.
IRAS ID
235805
Contact name
Jeremy Parr
Contact email
Duration of Study in the UK
2 years, 2 months, 31 days
Research summary
Research Summary:
Anxiety is common in people on the autism spectrum, and leads to everyday difficulties affecting quality of life. National guidance suggests current National Health Service treatments for anxiety be modified to make them appropriate for autistic adults. Recently, the autism community rated anxiety treatment as a top research priority. This study will investigate the feasibility of providing a personalised anxiety treatment package to autistic adults, and its effects.We will conduct a national autism and anxiety survey, and gather the views from autistic people and professionals about treatments. Using this information, we will adapt current NHS anxiety treatments to make them ‘fit for purpose’ for use with autistic adults. Often people on the autism spectrum experience the symptoms of multiple anxiety types, which means that a treatment approach focusing on one anxiety disorder alone is less effective than expected. Our programme enables a personalised treatment plan to be developed for each individual to address their own specific anxiety profile.
We will investigate the feasibility and effectiveness of delivering an adapted personalised treatment plan through the NHS. Up to 40 people will be allocated by chance to one of two groups – improved treatment as usual, or personalised anxiety treatment - autism (PAT-A). We will measure whether the treatment is acceptable to autistic adults (and where relevant, their relatives). We will investigate effectiveness by comparing the impact of anxiety on the individual’s daily life before and after treatment. At the end of the study we will work collaboratively with other UK clinical researchers to learn from our findings, and make any further adaptations needed to these personalised treatment plans. We will then consider applying for further funding to undertake a full scale evaluation of the treatment approach through the National Institute for Health Research.
Summary of Results:
This programme of research aimed to improve understanding of anxiety in autistic people and to develop better ways of assessing and treating it. A national survey was completed by 568 autistic adults, 189 relatives of autistic adults and 247 parents or carers of autistic children and young people. Participants described their experiences of anxiety, its effect on everyday life, and their experiences of accessing treatments and services. Many autistic adults and parents or carers also completed a follow-up survey containing additional questionnaires about anxiety and related experiences.Anxiety was extremely common, although we specifically contacted those who had previously told us that they experienced anxiety. Overall, 96% of autistic adults said that they had experienced anxiety, although only 77% reported having received an anxiety diagnosis. Parents or carers reported that 93% of autistic children and young people had experienced anxiety, but only 37% had received a diagnosis. Difficulty coping with change or uncertainty was commonly linked to anxiety in both adults and children. Sensory experiences, feeling different from other people, and experiences of bullying or discrimination were also important.
Anxiety affected many areas of everyday life. Among adults, it commonly affected family life, social activities, friendships, relationships, work or education, and participation in hobbies. Parents and carers reported similarly wide-ranging effects for children, including effects on family and social life, friendships, school attendance and schoolwork. A follow-up study of 183 autistic adults with anxiety linked to particular situations also found high levels of distress, avoidance, need for support and disruption to daily functioning. Many had missed social opportunities or hobbies, experienced difficulties at work, or spent money on equipment, home changes or private treatment.
Although many participants had received medication or talking therapy, support did not always meet their needs. Only 5% of adults and children who had received talking therapy were reported to have fully recovered. Therapy led to some improvement for 56% of adults and 68% of children, but made no difference for 27% of adults and 24% of children. Twelve per cent of adults reported feeling worse following therapy. Among adults who had not completed therapy, common reasons included finding the treatment unhelpful or feeling that the service had not been adapted to meet their needs.
The research showed that autistic adults considered reasonable adjustments to healthcare very important, but these were often unavailable. Helpful adjustments included quieter and less crowded environments, information being provided to clinicians before appointments, support to prepare for appointments, flexible communication, and working with a clinician who understood autism and adapted their approach. The findings identified three main areas in which adjustments were needed: the sensory environment; the organisation and delivery of services; and clinicians' knowledge and communication. Greater availability of adjustments was associated with better experiences of treatment. These findings have helped demonstrate that reasonable adjustments are not optional extras: they are central to making healthcare accessible and effective for autistic people.
The research also produced the Anxiety Scale for Autism-Adults (ASA-A), developed with autistic adults to reflect aspects of anxiety that may be missed by questionnaires designed for the general population. Testing with 551 autistic adults found that this 20-item questionnaire could provide an overall anxiety score as well as information about social anxiety, physical feelings of anxiety, and difficulties with uncertainty. A score of 28 or above may indicate significant anxiety, although the questionnaire is a screening tool and should not be used on its own to make a diagnosis. It was the first self-report anxiety questionnaire developed specifically for autistic adults and is now available for use in research and clinical practice.
Further analyses involving 426 autistic adults explored relationships between sensory processing, difficulty identifying and describing emotions, uncertainty, anxiety and repetitive behaviours. The findings suggested that different repetitive behaviours may have different underlying functions. Repetitive movements were particularly linked with physical feelings of anxiety, whereas a need for sameness or routine was more strongly linked with difficulty coping with uncertainty. Difficulty identifying emotions also contributed to some of these relationships. These findings suggest that assessment and treatment should consider the person's sensory environment, emotional awareness and experience of uncertainty, rather than treating either anxiety or repetitive behaviour as a single, uniform problem.
Finally, the research team developed Personalised Anxiety Treatment-Autism (PAT-A), a flexible psychological treatment offering up to 12 individual sessions. Treatment was based on each person's needs and could include support with recognising emotions, mindfulness, coping with uncertainty, social anxiety, and fears or phobias.
Thirty-four autistic adults took part in a pilot randomised trial within NHS services. Fourteen of the 17 participants offered PAT-A completed the treatment, and follow-up participation was good. Participants generally found both the research procedures and PAT-A acceptable. Many valued having therapy adapted to their communication and other needs, described learning skills that they could use in daily life, and reported positive changes in anxiety and everyday functioning. Some participants felt that more sessions or continued support would have been helpful.
Because this was a small feasibility study, and because parts of the follow-up were disrupted by the COVID-19 pandemic, it cannot establish whether PAT-A is more effective than existing care. However, it showed that the treatment could be delivered within NHS services and that autistic adults were willing to take part in a randomised trial. The findings support a larger trial to examine clinical effectiveness and cost-effectiveness.
Overall, the research demonstrated that anxiety is common, disabling and sometimes insufficiently recognised or treated in autistic people. It produced a new autism-specific assessment tool, clarified some of the factors contributing to anxiety, identified practical changes needed within healthcare, and developed a promising personalised treatment approach for further evaluation.
REC name
Wales REC 5
REC reference
18/WA/0014
Date of REC Opinion
19 Jan 2018
REC opinion
Favourable Opinion