Autistic people and their families have told us that developing better ways of detecting and treating mental health difficulties is a key research priority for them.

We’re funding research to design a practical and useful way of diagnosing anxiety and depression in autistic people with learning disabilities who speak few or no words.

Explaining the need for this project

Many autistic people with a learning disability have untreated mental health conditions as diagnosis assessments are not tailored to the ways they communicate and interact.

Some autistic people with learning disabilities find it hard to explain their feelings and experiences because they speak few or no words. This means doctors have to rely on changes in their behaviour to assess them for mental health problems. But because these changes in behaviour are also characteristic of their autism or indicate pain it can be difficult to work out which ones might point to a mental health condition.

That means autistic people and their parents or carers often struggle to access the right mental health care and therapies through their local health services.

The research process

Jane Waite and her team designed a practical questionnaire for assessing anxiety and depression in autistic people who speak few or no words. The assessment aims to take doctors less than 20 minutes to complete (if the autistic person is accompanied by someone who knows them well for example a carer or family member).

The team:

• Reviewed what is currently known about anxiety and depression in autistic people with intellectual disability
• Interviewed families, carers and clinicians about their experiences
  
• Developed an assessment tool based on questionnaire and interview data
• Ran a large questionnaire study involving over 300 participants to see whether the assessment tool can reliably measure anxiety and depression
• Have recruited autistic people who speak few or no words for the assessment using the tool
• Are working with Birmingham Women's and Children's Hospital to integrate the measure into services

Research findings and next steps

The assessment tool which was developed from questionnaires and interviews with parents and carers was found to be reliable and effective at differentiating symptoms of anxiety from autism. The final stages of the project will involve piloting the tool in a clinical setting. The research team are developing short videos and downloadable guides for parents and clinicians to enhance understanding of anxiety and low mood in autistic people who speak few or no words.

How this project is making a difference

Finding ways to identify anxiety and depression and ensuring timely and effective support will ensure better care and wellbeing for autistic people with learning disabilities.

The new assessment tool will give health professionals a reliable way of assessing autistic people who speak few or no words during their first appointment. At the same time, the work is raising awareness of the health inequalities faced by this underserved group of people.

Read the most recent published work from this research