The Autism Project

“Our study involved more than 1,800 autistic young people and provided unique insights into the ways in which Tellmi helps them.”

Learning from our existing data informed a mixed-methods survey which was designed in partnership with ARC and ACE, and reviewed by four autistic teenagers. A total of 829 undiagnosed and diagnosed young people completed the survey. The success of the survey was, in part, due to the fact that it spoke to a group of young people whose lives are extremely challenging, yet who perpetually feel ignored and misunderstood by society, as this young person explains:

“The fact you are learning about autism makes me feel included and confident about the future of this app. I do like helping others and supporting others and asking for the same in return.”

In line with the literature (Cassidy et al., 2020); O’Halloran et al., 2022), our quantitative and qualitative data found evidence of serious mental health issues in autistic young people; 87% suffer from anxiety and 64% experience suicidal thoughts, however rates of anxiety, panic attacks and disordered eating were higher in the undiagnosed group. School had a negative impact on mental health; bullying was common and support within the education system was minimal. Negative experiences with mental health services were common. Autistic young people reported being left on waiting lists and, when they accessed support, they found that CAMHS and similar services weren’t adapted to their needs; the support offered was not effective.

We conducted 1-2-1 interviews with participants which revealed that autistic girls, particularly those without intellectual difficulties, endured years of distress culminating in suicide attempts for four of the eight participants:

“In October, I attempted suicide. I decided to die earlier that day, and I just, it was pretty last minute…and so… then I don't really remember it. I just remember waking up three days later and my mum with me. I don’t remember, I just remember the ambulance and… I took an overdose and I was found by a member of the University well-being staff.  They had come to check on me because they were worried and about me, I'd missed a well-being meeting.” (Freya, 22)

Early autism diagnosis is critical to positive outcomes (Elder, 2017) but in the UK, the mean age for diagnosis has risen from 9.6 years in 1998 to 14.5 years in 2018 (Russell et al., 2022) and girls in particular face huge challenges in receiving a diagnosis. Qualitative research identified 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. 

Because so many Tellmi users did not have a diagnosis but believed themselves to be autistic, we collaborated with Professor Sir Baron-Cohen and Dr Allison at ARC to adapt the Autism-Spectrum Quotient (AQ-10) screening tool for integration into Tellmi. Originally designed as a tool for parents/caregivers, we converted it into a digital self-report tool for young people. During the study 552 CYP used the AQ-10; 366 scored above the threshold for an autism assessment.

“Tellmi removes barriers to communication, reduces isolation and increases social connectedness for speaking and non-speaking autistic users.”

Most studies with autistic young people include fewer than 100 participants (Hayden, 2018). Our study involved more than 1,800 autistic young people and provided unique insights into the ways in which Tellmi helps them. Combined analysis of app data, mixed-methods survey and interviews confirm that asynchronous interaction and the time delay for moderation removes some of the pressure around social interaction and anonymity takes away fears of judgement. Filtering by the ‘Autism’ tab, makes it easy for autistic users to connect to other people who understand the nuances of autism. Tellmi is safe because it is moderated and is a ‘calm’ app and doesn’t lead to sensory overload. Tellmi removes barriers to communication, reduces isolation and increases social connectedness for speaking and non-speaking autistic users; 92% of survey respondents who feel lonely said Tellmi helped them to connect to others who experience the same challenges.

“Tellmi has helped me, so many amazing people have reached out when I needed it and I’m so thankful for them. It’s really helpful because there’s people who can relate and know what you’re going through and how to help you. There’s moderators who make sure that what people are saying is okay in case it could be inappropriate for younger ages.”

Interviews with parents also confirmed that using Tellmi led to noticeable changes in behaviour in autistic young people. This finding merits further research.

“I didn't know Ruby was using Tellmi when she approached me to ask about taking part in the Autism survey. I obviously checked Tellmi out to make sure everything was above board, as you do, especially as a parent of an autistic teenager. I was really impressed with the app. I think Ruby likes it because it makes her feel safe and it has allowed her to connect with other people her age who have similar problems, so she doesn’t feel so alone now. She has been a different kid since she started using Tellmi. She really has. She's been a lot more open. She's just a different kid. If that's what Tellmi can do, I 100% encourage it.”

Mike, Ruby’s dad

Our phase 1 study showed early indications of patient benefit, but we did not design Tellmi to support autistic young people so we need to evaluate what we are doing and what we need to do in order to improve the service so that it is tailored specifically for autistic young people. 

“We are so pleased to be working with Tellmi. This is one of the few platforms where young autistic people can connect with each other, feel less isolated, and benefit from peer support. Our ongoing research is evaluating if Tellmi is reducing the mental health crisis that too many autistic people are experiencing”. 

Professor Simon Baron-Cohen, Director of the Autism Research Centre, Cambridge University