‘A’ by Tellmi turns your waiting list into a support network
There are 118,000 young people in the UK waiting for an autism diagnosis. Historic data indicates that 70-100% of them will eventually receive a diagnosis (Autistica, 2024), but the assessment system is currently so slow that some children have to wait up to four years for the NHS to confirm something that they, their parents and their teachers have always known (Children’s Commissioner, 2024).
It is widely recognised that autistic young people have much higher rates of mental ill health; 70% have one mental health disorder (Lever & Geurts, 2016) and 40% have two or more (Reaven & Wainer, 2015). Yet even though an undiagnosed autistic child is 21% more likely to experience a life-threatening mental health crisis than a child who is diagnosed (ACE, 2024), there is currently no additional mental health support for young people who are on autism assessment waiting lists. It is a very expensive oversight. Crisis support for young people who have experienced a deterioration in their mental health while on waiting lists is costing the UK £295 million P.A (Centre for Mental Health, 2025).
With nowhere else to turn, autistic young people and those waiting for a diagnosis turn to Tellmi. Although just 2% of young people in the population have an autism diagnosis, 18% of Tellmi users have one and a further 25% are on waiting lists, or believe that they should be diagnosed. Because Tellmi was not designed to specifically support autistic young people, in 2022 we teamed up with the Autism Research Centre at the University of Cambridge to explore why so many of them use Tellmi. The results of that study, which included 1,880 autistic young people, showed us that there was a lot we were getting right, but there were other things that we needed to improve.
In 2024, Innovate UK funding enabled us to build on our initial research findings. We spent six months working with a small team of autistic young people who helped co-create a specific support solution that addressed the issues identified in our earlier research. With support from human-centered design agency Mima, autism charity Ambitious About Autism and a larger cohort of autistic young people, we designed ‘A’ by Tellmi, a digital resource aimed specifically at young people who are waiting for diagnosis. From interactive personalised digital safety plans to autism trained counsellors, autism specific peer support and useful advice and information on autism and the diagnosis pathway, ‘A’ by Tellmi turns your waiting list into a support network.
References
ACE (2024). ‘Suicide or deliberate self-inflicted harm’ identified as the most common category of death in autistic children without a learning disability. https://www.autismcentreofexcellence.org/autistic-children-suicide-data-2/
Autistica (2024). Not a Priority: The crisis in autism assessment and support. https://s3-eu-west-1.amazonaws.com/autistica/downloads/images/article/Freedom-of-Information-report-Autistica.pdf
Centre for Mental Health (2025). Future Minds: Why investing in children’s mental health will unlock economic growth. https://www.centreformentalhealth.org.uk/wp-content/uploads/2025/02/Future-Minds-Report-2025-WEB.pdf
Children’s Commissioner (2024). “We are robbing children of their childhoods” - new data reveals years-long waits for children’s autism diagnoses. https://www.childrenscommissioner.gov.uk/blog/we-are-robbing-children-of-their-childhoods-new-data-reveals-years-long-waits-for-childrens-autism-diagnoses/
Lever, A. G., & Geurts, H. M. (2016). Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. Journal of Autism and Developmental disorders, 46(6), 1916–1930. https://doi.org/10.1007/s10803-016-2722-8
Raven, J. & Wainer, A. L. (2015). Chapter Two - Children and Adolescents with ASD and Co-occurring Psychiatric Conditions: Current Trends in Intervention. International Review of Research in Developmental Disabilities, 49 (2015), 45-90. https://www.sciencedirect.com/science/article/abs/pii/S2211609515000093
