What is the project about?
There are over 560,000 autistic adults in the UK, and most of these are currently undiagnosed. These overlooked autistic adults are often misunderstood and marginalised, commonly experiencing mental health problems and disadvantage. There is an urgent need to identify this lost generation of autistic adults, so they can receive targeted support. This project will test two new diagnostic interviews for assessing autism in adults in order to improve the diagnostic process.
What are researchers doing?
There are currently very few quick and accurate tools to help clinicians diagnose autism in adults. In this project, researchers are testing two versions of a diagnosis interview.
- One version will include information about the person’s experiences currently, as well as information about their childhood provided by someone who knows them well.
- As it may not always be possible to include someone who can give this information, the second version of the interview will only focus on the current experiences of the adult being assessed.
The two interviews have already been tested in a pilot study, so this research will further test how reliable and accurate they are before they can be rolled out for use.
The wording and usability of the interviews will be tested in interviews with autism community members.
The accuracy of the interviews will be tested in collaboration with NHS adult autism assessment services. Over 200 participants will be assessed using the interviews and also using a range of other assessments. This will help researchers to check if their interview assessments match a gold-standard autism diagnosis.
Researchers will test how easy it is to train clinicians to accurately use the interviews for diagnosis. In training workshops, NHS clinicians will be asked to assess two recorded versions of the interviews. Their accuracy will be measured against two expert raters.
How will the project help?
The researchers hope that the interviews will improve the accuracy and efficiency of the adult autism diagnosis process. They will be quicker to deliver and can be used by less senior clinicians, meaning that they could reduce waiting times and allow autistic adults to access necessary supports sooner. Because they are structured, the interviews can be used over the phone, further reducing waiting list times. Above all, the interviews will potentially give hundreds of thousands of adults access to an autism diagnosis that will allow them to gain appropriate supports and better understand themselves.
How will Autistica support the project?
Through our Autistica Network, we will recruit a steering group of autistic adults and family members who will guide the project choices. We will also support community members to share their thoughts on data gathered during the project. Through our Network, we will be able to share the outcomes of the project with community members and professionals.