Research Shows That Tellmi is a Lifeline for Autistic Young People
Every year, Tellmi conducts an annual Tellmi Impact and Outcomes Survey. In 2022, (N=1205)*, 17% of the young people who responded were autistic. Since only 1.8% of young people in the population are autistic, we realised that this offered us a unique opportunity to do some research. Autism-specific mental health solutions are urgently needed because 70% of autistic young people have at least one diagnosable mental health condition and 41% have two or more.¹ Autistic young people are often excluded from services and receive inappropriate treatment for mental health problems.² There are high rates of self-harm and suicide among autistic people.³ One in four autistic young people experiences suicidal ideation and one in ten attempts suicide.⁴
Working in partnership with the Autism Centre of Excellence at Cambridge (ACE) and the Autism Research Centre - University of Cambridge (ARC) we won a six month phase 1 SBRI grant. We wanted to understand why so many autistic young people are using Tellmi and to explore the issues undermining their mental health. Our findings confirmed existing literature. Quantitative interrogation of Tellmi data (N= 677) revealed that 32% of autistic users made high risk posts about self-harm and suicide.
A mixed methods survey (N=825) which was developed with our academic partner and reviewed by four autistic teenagers, revealed no discernable difference in terms of key autistic traits or mental health issues between young people with an autism diagnosis and those without one, although rates of anxiety, panic attacks and disordered eating were higher in undiagnosed autistic young people. Both quantitative and qualitative data found evidence of serious mental health issues in autistic young people; 87% suffer from anxiety and 64% experience suicidal thoughts.
Qualitative interviews (N=8) revealed that girls in particular faced challenges in receiving an autism diagnosis and are more likely to be channelled into mental health services which fail because their autism is not acknowledged. Interviews identified the benefits of diagnosis and revealed that, in the absence of a clinical diagnosis, screening tools and education around autism can help autistic young people to understand themselves and embrace an autistic identity.
As a result of this finding we adapted the Autism-Spectrum Quotient – 10 Items (AQ-10) screening tool and integrated it into the Tellmi app. During the study 552 young people used the AQ-10 and 366 scored above the threshold required for an autism referral.
Combined data from in-app analysis, the mixed methods survey and the 1-2-1 interviews confirmed that Tellmi effectively removes barriers to communication, increases social connectedness and decreases loneliness for verbal and non-verbal autistic users. Autistic users engaged with Tellmi 7 times more frequently than neurotypical users and for many it was, literally, a lifeline.
We are now embarking on an application for a much larger pot of funding to help us to integrate the changes that our autistic users have asked for. We will also be trying to understand how autism can cost the UK taxpayer £32 billion pounds a year - more than cancer, heart disease and stroke - and yet autistic young people struggle to get diagnosed, to get support in school and to get the mental health care that they desperately need.
If these issues affect you or someone you love and you would like to learn more about what we are doing, please contact us.
* N= number of participants
References
Simonoff et al., 2008. Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample. https://www.jaacap.org/article/S0890-8567(08)60059-3/fulltext
Camm-Crosbie et al., 2019. ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. https://journals.sagepub.com/doi/10.1177/1362361318816053
Cassidy et al., 2020. Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism. https://link.springer.com/article/10.1007/s10803-020-04643-9
O’Halloran et al., 2022. Suicidality in autistic youth: A systematic review and meta-analysis. https://www.sciencedirect.com/science/article/pii/S0272735822000290?via%3Dihub
