The aims of this study are to: survey adults on the autism spectrum, those seeking a diagnosis and relatives about their experience of diagnostic services. We will also survey UK professionals who diagnose adults with autism spectrum conditions, about current NHS diagnostic care pathways.
Using information from the surveys, and discussion groups, the study aims to investigate what people consider is the best way to assess and diagnose autism spectrum conditions across NHS services.
In addition, the study will carry out a review of the evidence underpinning measures currently used to diagnose autism spectrum conditions in adults. Through links with local and national clinical services, the best combinations of measures will be identified that are most effective for diagnosing ASCs in adults across the age and ability range.
Finally, during the study a new diagnostic interview will be developed and piloted for use to identify ASCs in adults in situations when there is little or no early developmental history available.
Further information
For further information, please contact the Research Associate for the study, Dr Sarah Wigham (sarah.wigham@ncl.ac.uk).
Exploring the effectiveness of personalised non-pharmacological anxiety treatment for adults with autism
What is this study about?
Anxiety is common in people on the autistic spectrum and has the potential to significantly affect quality of life. There is an acknowledgement that anxiety can present differently in people with autism and that current psychological interventions need to be adapted to reflect this. Anxiety was recently rated as a top research priority by the autistic community.
The first phase of the PAT-A project aims to conduct a large, national survey with autistic adults and their relatives. The aim of this phase is to help us to characterise the nature and impact of anxiety in adults with autism and people’s experiences of any psychological intervention for anxiety that they might have received in the past.
The findings from phase one of the project will help to inform the development of a personalised anxiety treatment programme for adults with autism (PAT-A). This will include working with local NHS providers to refine existing treatment packages for anxiety to best meet the needs of autistic adults. Where existing interventions are thought to be unsuitable, we will use innovative treatment packages based on situational fears, phobias or intolerance of uncertainty, which have already been designed and piloted by our team. We will consult with key stakeholders with a view to creating a PAT-A treatment manual.
The final phase of the project aims to test the feasibility and efficacy of the PAT-A intervention in a pilot randomised control trial. Participants in the control group will receive enhanced treatment as usual, which will consist of an emotional literacy programme plus any NHS treatment that they are already receiving. Participants in the experimental group will receive the same emotional literacy training followed by a bespoke PAT-A intervention which is based on their individual needs. We aim to disseminate the findings in collaboration with the autistic community.
Further information
For further information, please contact the Research Associate for the study, Dr Sam Brice (samuel.brice@ncl.ac.uk).
Enhancing the validity of a Quality of Life measure for autistic people
The autism and quality of life study led to the development of autism specific items that we call ASQoL. Through extensive consultation with the autism community, we focused on issues such as sensory sensitivity, financial insecurity, and barriers to accessing services which are not well covered in the measure often used in research - the WHO quality of life measure (WHOQoL-BREF).
As a result of our study, it is now possible to measure quality of life of autistic adults with a combination of the WHOQoL-BREF, the WHO Disabilities module (covering issues such as inclusion and autonomy) and the ASQoL. We thank Research Autism and the Shirley Foundation who funded the study (2016-7), and all the hundreds of participants who contributed their time and life experience to the work.
The development and initial evaluation of the ASQoL is reported in the following journal paper:
Please see our Summary of Quality of Life Research Findings (PDF: 522KB) for further information on this study.
To access more information about using and scoring the ASQoL, click here:
http://research.ncl.ac.uk/cargo-ne/ASQOL.html
What was this study about?
We were interested to find out what people on the autism spectrum want out of life, and about their hopes, and worries. We measured this by asking questions about people’s lives. We were trying to find out how to accurately measure the quality of life for autistic adults.
A video was made to answer autistic people's questions about the study:
Who was asked to take part?
Members of the Adult Autism Spectrum Cohort who have completed research measures previously, and who have told us they would like to take part in more research.
What did taking part involve?
We asked autistic people to complete a survey. First, we showed the participants some questions that we thought would be good for finding out about quality of life. We asked the participants to tell us if they thought the questions were clearly worded and easy to understand, and if they were important questions about Quality of Life.
Second, we sent a number of questionnaires to complete. One was a quality of life measure (like the one which you filled in when you joined the Adult Autism Spectrum Cohort) and some were about your happiness and social life.
What's next?
We have submitted our research findings to be published (around 5 papers). We will be sharing our new items with service providers and practitioners to use when measuring the QoL of autistic people. We will continue to highlight the importance of improving QoL for autistic people by telling people about our findings through social media.
Thank you.