Alma Foster is a second-year trainee educational psychologist at the University of Exeter, where she is currently conducting doctoral research on neurodivergence self-diagnosis among adolescents. Alma’s work aims to understand the experiences of young people and their families, using qualitative research to give a voice to this often-underrepresented group. Alma has recently collaborated with EP and academic tutor, Natasha Ellis, on a groundbreaking exploration of how and why self-diagnosis might occur among young people on TikTok.
“Educational psychologists have a unique role in challenging misinformation on platforms like TikTok.”
From drama to educational psychology
I completed my undergraduate degree at Bath Spa University, where I studied a combined honours course in drama and psychology. At the time, I aspired to train as a drama therapist, and although my career took a different path, this blend of disciplines gave me a unique perspective on communication and behaviour that I am grateful for.
After that, I pursued a master’s in the psychology of education at the University of Bristol before starting my doctorate in educational, child and community psychology at the University of Exeter. In between these academic milestones, I gained valuable experience working with children and young people across various sectors, including public, private, and charity-based roles. This hands-on experience has informed much of my academic research and professional practice.
A day in the life of a trainee educational psychologist
I’m currently a second-year trainee educational psychologist. Three days a week, I’m on placement with a local authority, where my role involves delivering training, conducting consultations and contributing psychological advice to education, health, and care needs assessments. On the other two days, I am typically at my laptop with a cup of tea and my cat, Mani, nearby, diving deep into thesis research.
How TikTok sparked the search for answers
This paper was originally a university essay assignment with the prompt title of The Child in Context. The context I selected was the digital world and TikTok specifically. I had noticed an increase in comments and discussions about autism and ADHD self-diagnosis on social media and an increase in advertisements for online self-assessment tools! I read news stories highlighting self-diagnosis among young people as a concern, and I was curious to understand whether, how and why this may be happening.
On a personal note, I had my own experience with a self-diagnosed condition, which eventually resulted in a formal diagnosis, so I felt I had some understanding of the systemic barriers that individuals can face in receiving support.
A challenge in writing this paper was the lack of empirical research on the topic; most evidence came from anecdotal sources rather than scientific papers. This meant that I could not verify the processes at play or the gravity of the phenomenon. A related challenge was the lack of insights from young people themselves. There appeared to be lots of assumptions about why young people might be self-diagnosing, and I felt that many of these assumptions did not appear to come from a place of empathy or curiosity. Some writers speculated about young people intentionally pretending to be autistic or to have ADHD on TikTok to gain social clout or monetary rewards.
While this could be the case in some instances, I feel the picture is more complicated than this overall. In general, we should encourage rather than discourage self-reflection and help-seeking behaviour and avoid rebuking young people for using the tools available to them. Most importantly, we need to listen to young people’s perspectives; what are their stories, how has self-diagnosis been helpful or unhelpful for them, what have the impacts been, and what sort of support is wanted?
Natasha (Tash) is an educational psychologist and academic and professional tutor at the University of Exeter. Tash helped me edit my university essay assignment into a paper to submit to the journal, Educational Psychology in Practice. As Tash has lots of experience with the academic, research and professional aspects of educational psychology, she supported me in finding the best way to capture this topic and think about the next steps for professionals. The resulting publication was a collaborative effort.
Untangling the truth behind TikTok self-diagnosis
This paper explored, from a psychological perspective, why some young people who use TikTok may engage in self-diagnostic processes. I first looked at how TikTok works and the quality and accuracy of the popular content. Researchers have found that around half of TikTok content about neurodivergence (e.g., ADHD, autism, and Tourette’s syndrome etc.) includes inaccurate or partial information.
There are often depictions of symptoms that would not necessarily warrant a diagnosis and could be explained by any number of conditions, contexts or experiences. It is highly understandable, therefore, why self-assessments based on this content may not always be completely accurate.
I then considered how social psychological theory could help us understand why some young people may use self-diagnosis to understand themselves and to connect to other people. These theories helped me to consider how people may wish to both fit in and stand out, how we tend to look for roles and labels, and how we may hang onto these roles and labels if we feel they bring us personal and social well-being.
This is not to suggest that self-diagnosis can only be inaccurate — it is likely that many young people may be correct in their self-assessment but have faced logistic, demographic or affective barriers to accessing services. There are very long waiting lists for autism and ADHD assessments. Some studies have also found differences in the accuracy and timeliness of diagnosis relating to race and gender, therefore some individuals may face further barriers due to intersectional marginalisation.
Tackling misinformation on social media
Alongside psychological knowledge, educational psychologists apply skills in research, communication and critical thinking. Therefore, educational psychologists are well placed to challenge ideas that are not evidence-based and to support others to consider all the intersecting elements of a situation rather than a single story.
It would be helpful for educational psychologists to share their knowledge and skills on platforms, such as TikTok, that young people are engaging with. By delivering evidence-based information in an accessible way to young people, we could raise the quality of the information that young people are using to understand themselves and the world around them.
The role of social media in mental health awareness
I think social media platforms have a responsibility to support their users in determining the accuracy of the content they are accessing. It could be especially helpful if social media platforms required greater transparency for posts that relate to diagnoses — for example, asking creators to include extra details when posting such content so viewers can more easily determine the trustworthiness of the information.
Creators could be asked to state when their content is based on personal experience/opinions — the platform could then remind viewers that the information may not be representative of all people with this condition/experience. If the content includes diagnostic or therapeutic advice, creators could be asked to include references, share any relevant professional qualifications, and declare any corporate sponsorships. It might be helpful for this information to be consolidated on social media platforms into some sort of trustworthiness ‘rating’ that users can quickly recognise to help them to navigate mental health and neurodiversity content.
Since Tash and I wrote this paper, I have noticed that TikTok has added a health warning with links to NHS websites when users in the UK search for terms such as “autism” or “ADHD”. I feel that this is a step in the right direction — however, this warning does not seem to appear for all neurodiversity and mental health search terms yet. Also, the warning might only appear when these terms are searched for, rather than alongside videos a user may come across while scrolling.
Connecting with the Womanthology Community
I would welcome any comments or questions from the Womanthology community, and I would be especially keen to learn about any other work or research being conducted in this area. Our article is open access and can be found here: Full article: TikTok-inspired self-diagnosis and its implications for educational psychology practice
Looking to the future of self-diagnosis research
Over the next year and a half, I will be conducting my doctoral thesis research on the topic of adolescent neurodivergence self-diagnosis. I will be talking to young people and parents/carers about their experiences. I’m really excited to be granted the opportunity to listen to these stories and to share my findings so that the voices of young people and their families are not missing from this important conversation.
I am looking forward to being able to share evidence-based insights on this topic so that health and education professionals can consider how best to provide meaningful support around self-diagnosis.
To learn more about the DEdPsych course and the tutor team, you can visit: DEdPsych Educational Child and Community Psychology | School of Education | University of Exeter
