As the Exploring Diagnosis funding runs out this July, we have been reflecting on our project achievements. We have produced:

2 x PhD thesis

• Drawing a line in the sand: Autism diagnosis as social process by Jennie Hayes 

Jennie’s PhD explored how clinicians make diagnostic decisions about autism in secondary care. The process of diagnosis is complex and can be particularly challenging when cases are considered ‘borderline’ or where there are coexisting conditions. Utilising thematic and discursive qualitative methods, we found that uncertainty and contradiction are core to autism diagnosis. Clinicians develop strategies to manage the institutional necessary for a binary decision despite this uncertainty, including performing diagnosis as an act of interpretation, affect and evaluation, providing explanations for contradictory evidence, and drawing on pragmatism when necessary.

The result of this translation from uncertainty to certainty is the construction of a condition whereby it is possible to be both part of a spectrum as well as categorically defined. Overall, the PhD provides insight into our understanding of diagnosis as a social process.

• What’s in a label? An exploration of how people acquire the label ‘autistic’ in adulthood and the consequences of doing so by Thomas Lister

In Tom’s PhD he investigated how people came to be labelled, or to label themselves, as autistic in adulthood. Previous research has shown that obtaining an autism diagnosis in adulthood comes with significant benefits (greater self-awareness and access to support services) as well as some undesirable drawbacks (shame and a sense of helplessness). Yet a medical diagnosis is not the only way of acquiring the label. An individual can also label themselves – that is, self-identify – as autistic, and they can be labelled as such by other autistic people. By conducting a series of qualitative interviews (n=42) with those who had acquired the label, Tom developed three theoretical concepts that illustrate how people go about obtaining the label ‘autistic’ and what it means to live with it: (1) autism as a ‘sticky-slippy’ label, (2) four ideal types of self-identification, and (3) the notion of a ‘lay diagnosis’ where people ‘passively spot’ and ‘actively seek’ autism in others.

2 x books

• Russell, G. (2020) The Rise of Autism: Risk and Resistance in the Age of Diagnosis (1st ed.). Routledge.
• Kapp, S. K. (Ed.) (2020) Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Palgrave Macmillan.

3 x films produced with 4 incredible artists with autism

• In total the films have over 3,400 views.
• We also held 3 screening events, one of which being in San Diego.
• You can watch them here.

14 x articles

Including:

• Hayes, J., Ford, T., Rafeeque, H. and Russell, G. (2018) ‘Clinical Practice Guidelines for Diagnosis of Autism Spectrum Disorder in Adults and Children in the UK: A Narrative Review.’ BMC Psychiatry. – which has been accessed 17,000 times.
• Russell, G. and Dyck, E. (2019) Challenging psychiatric classification: Healthy autistic diversity and the Neurodiversity Movement. In: Brumby, A. and Taylor, S. (Eds) Healthy Minds in the Twentieth Century: In and Beyond the Asylums. – which has been accessed 7,800 times.
• Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T. and Ford, T. (2019) Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Molecular Autism. – which has been accessed 6,500 times.

All our work is open access and can be found here.

10,000 leaflets on Neurodiversity to be given to adults diagnosed with autism

• These leaflets were sent to all adult mental health services in the UK.
• It was also shared on tes.
• You can download the leaflet here.

Numerous animation workshops with neurodiverse people

• These took place in Weston-super-Mare and Devon.
• Some of our older blogs show what was created.

21 talks on our work across 7 different countries

• You can browse through the talks here.

“As PI of ExDx I have thoroughly enjoyed the past 4 years. Thank you to all our participants and advisory group members, without whom we would not have been able to achieve any of this work. Also thanks to the ExDx team for working so hard and diligently to produce valuable research for the field of autism, Neurodiversity and the sociology of diagnosis.” – Ginny Russell

Apologies it has been so long since blogging, the ExDx team has now largely disbanded and Ginny has been working on her latest book The Rise of Autism: Risk and Resistance in the Age of Diagnosis to be published later this month.

This two-part blog series will share with you some of the graphics that will feature in the book.

Figure 1: This figure outlines the possible links between older parenthood and autism in offspring.

Figure 2: This data shows plotted ONS data on UK average age of motherhood over last twenty years.

Figure 3: The below graph shows the rise in pre-term birth rates in high income regions.

Figure 4: This graph shows the rise in “medically indicated” pre-term births, meaning those decided by doctors, versus spontaneous pre-term births in the US.

Figure 5: This graph shows interaction of obesity, wealth and gender. A thought-provoking picture of social interactions.

Recently ExDx Research Fellow Dr Steven Kapp went to meet one of the project’s featured artists, JA Tan, in his native habitat. His studio is in Vancouver, Canada on Granville Island, is a creative paradise where artists study, work, and show or sell their products in crafts shops, boutiques, and galleries. Indeed, JA studied down the road at the Emily Carr University of Art and Design.

A table with awards and honours for some of JA’s achievements over the years greets entrants to his studio. His beautiful paintings decorated the peaceful space, illustrating scenes inspired by his travels around the world as well as his inner experiences. It was exciting to see the full-size piece ‘Throwing a Party’, which the ExDx website features on JA Tan’s page: https://blogs.exeter.ac.uk/exploringdiagnosis/artistsbiographies/ja-tan/!

Thank you to JA and his mother Zelie and father Vince for their generous hospitality in Vancouver, and it was lovely to see them again in San Diego.

Thanks to the organisational skills of both Debra Muzikar and Dr Lamis Jabri from the Art of Autism our Films made their first International appearance at the Mozart & the Mind Symposium, San Diego on Sunday June 2nd.

Screened to an audience of both neurotypical and neurodiverse adults and children the Films were well received with comments ranging from

“What thoughtful films.” and

“Just loved them!” to

“Moving, they made me cry!”

Sitting in the audience was one of the artists featured in our films, the talented JA Tan.

JA Tan with his artwork.

It was both a delight and privilege to meet him and his family at the event.

JA’s mother, Zelie, snapped on the first day of the Symposium with a collection of JA’s work including T Shirts featuring Dancing Silhouette Figures.

Vince, JA’s father, on the second day of the Symposium with yet more of JA’s incredible artwork.

At the end of the day Dr Jean Harrington, Project Manager for the Films, and Dr Steven Kapp, Research Fellow on the Exploring Diagnosis study were able to join a panel of experts, including musicians, members of the medical profession, film makers and parents of young people with a diagnosis of autism, to consider the content and outcome of the successful two day Symposium.

It was a significant event for #ExDxFilms and we would like to thank the organisers of the Mozart & the Mind Symposium and especially Debra Muzikar and Dr Lamis Jabri from the Art of Autism for their kind and generous support.

The next screening of our #ExDxFilms is planned for Thursday 20^th June 2019 at Spike Island.

After we received the online feedback from our previous diagnosis leaflet which suggested that we make a version that would be accessible to a wider range of people on the autism spectrum, we began to create an ‘Easy-Read’ version. We achieved this by initially using an online readability checker to scan the text and flag up any words that may need altering in the new version. The layout of the leaflet was altered in accordance with an ‘How to Make Information Accessible’ resource from the Change People charity website.

The new version created was then looked over by our Exploring Diagnosis team, an Autism Spectrum Coordinator at Bury College, Manchester, and a group of autistic adults and support workers from Stallcombe House, Exeter. These several trial sessions allowed us to refine the leaflet such that it was clear and usable by the people for which it was intended.

The leaflet is now available on the Exploring Diagnosis website and Tes.

A big thank you to impact officer Clare Pybus for helping us achieve this!