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.
“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
The COVID-19 emergency resulted in a challenging period for 93.9% of families, increased difficulties in managing daily activities, especially free time (78.1%) and structured activities (75.7%), and, respectively, 35.5% and 41.5% of children presenting with more intense and more frequent behaviour problems.
Behaviour problems predating the COVID-19 outbreak predicted a higher risk of more intense (odds ratio (OR) = 2.16, 95% confidence interval (CI) 1.42–3.29) and more frequent (OR = 1.67, 95% CI 1.13–2.48) disruptive behaviour.
Even though ASD children were receiving different types of support, also requiring specialist (19.1%) or emergency (1.5%) interventions in a relatively low proportion of cases, a number of needs emerged, including receiving more healthcare support (47.4%), especially in-home support (29.9%), as well as interventions to tackle a potentially disruptive quarantine (16.8%).
The COVID-19 outbreak has undoubtedly resulted in increased difficulties among ASD individuals.
ADHD institute (Ireland) ADMiRE is a tertiary-level specialist ADHD service in South Dublin, Ireland. ADMiRE provides early access to evidence-based assessment, diagnosis and intervention for >200 children who are referred with primary presenting difficulties suggestive of ADHD. They found that:
In almost all cases, parents/caregivers reported an improvement in the behaviour and mood of the young person since schools had closed. This included a number of adolescents with ADHD and conduct disorder who were reported to have improved behaviourally and were respecting restrictions; this was attributed to their concern over vulnerable family members.
In contrast, young people with ADHD and comorbid autism spectrum disorder were reported to be struggling with the lack of structure and routine, as reflected in an increase in irritability, oppositionality and challenging behaviours.
In the majority of families, sleep patterns deteriorated, with sleep-onset times pushed forward by approximately 3 hours.
This study suggests that ADHD may be as a risk factor for infection with covid-19. They concluded that untreated ADHD seems to constitute a risk factor for Covid-19 infection while drug-treatment ameliorates this effect.
I could not find any research on the impact of Covid-19 on people with dyslexia. Although this does not necessarily mean there has not been any, I would have predicted that, because of school closures, the impact on children with dyslexia in particular would have been a prominent issue as some children with dyslexia can require specialist help to facilitate learning.
Our evaluation report on our public engagement activities are out! Although we still have more screenings and events this year, independent evaluator Helen Featherstone has been examining the impact of our activities.
People who watched the films at the events we have attended over the past year were asked to fill out questionnaires and reflect on what the films meant to them.
Some voices lifted from the questionnaires:
“Good to think about the complexity of the experiences of diagnosis.”
“Diagnosis – is this what people who are neurodiverse need?
“The primary focus of celebrating difference. Have head the words previously but having that concept demonstrated visually and with music has truly made the concept real for me.”
We have had a very busy time with the ExDxFilms over the past few weeks! On 7th November we showed the films to a mixed audience as part of the Wellcome Centre for the Cultures and Environments of Health public event ‘Researching Disability and Impairment: Creativity, Engagement and Social Change’. Organised by Charlotte Jones and Luna Dolezal, and held at the Royal Albert Memorial Museum (RAMM) in Exeter, it was a fascinating event with presentations and discussions touching on a variety of issues, from the ethics of research data to the experience of ‘time’ in the context of ‘medical waiting’.
We were extremely fortunate that Eddie Callis and his mother Jacqui were able to travel up from Cornwall to take part. In answer to questions posed by his mother, Eddie spoke about his experience of taking part in the production of the ExDxFilms and how he has continued with the art of animation. Bringing along both paper artwork and animation on his lap-top, Eddie showed us how he is producing an ebook to describe some of the challenges he faces in his daily life, including certain ‘triggers’. Eddie also delighted us by sketching through the afternoon producing some wonderful outlines of people, beautifully capturing their personas with just a few well-placed lines. Below is an example his work.
Just a few days later on the 11th November Eddie joined us once again, this time at an early evening showing of the films at the Cornwall Film Festival in Falmouth. The public event was entitled Thinking Differently! Celebrating Neurodiversity.
Again the room was set up with a table area for Eddie to sketch and to show his work – and again Eddie held the audience describing his experience with ExDxFims brilliantly and his on-going use of animation to express his challenges and feelings.
We are very much indebted to Eddie, and his family, for coming to these two events. Eddie’s presence added greatly to the value of the events. We would also like to thank Louise Fox, Director of the Cornwall Film Festival, and all her colleagues, for so generously and warmly supporting the Event.
Lastly on the 4th December we were back in Exeter showing the ExDxFilms at the THE ExIST STEAMM SHOW at the Exeter School of Art. Our audience during the day included students and educators from the surrounding area and in the evening members of the public. It was a great event with presentations covering technology, dance and virtual reality (VR), Smart Cities and solar artworks to name but a few. The ExDxFilms once again received good feedback. Our pile of leaflets on Autism and Neurodiversity disappeared rapidly and several tutors spoke of including the Films in their future lectures.
I am very impressed with the films. We may use them in some of our psycho education sessions for people who have just been diagnosed. I will also forward to colleagues in other services to use as part of autism awareness training for their staff.
Naome Glanville, Arts & Culture Exeter:
The project looks very interesting – I’ve just had a look through one of the films, (The state of being different) and it looks beautiful and the voice-overs are wonderful too.
Dr Tsung-ling Lee, Taiwanese Research Fellow:
…really liking the sensitivity and gentleness of the way the films are done. … it’s lovely to hear these individuals’ narratives, which sometimes are lost in the public dialogue.
gillywillybythesea, YouTube comment:
(about In My Head and Heart) Heartwarming – and very calming / grounding to watch and listen, too.
We are so pleased with the support our ExDx Films have received online with now over 2000 views! We will be continuing to tour the films throughout the rest of this year and well into next across the UK and possibly further afield. Below are current planned dates and links for the film festivals we’ll be appearing at this autumn. These events provide an opportunity where you can come and see the films and participate in conversation about them with other stakeholders.
26th September: Wales Neurodiversity Network, Cardiff. Here our films and experiences of making them) as a study day. They are a mixed group of professionals including SALT, Educational Psychologists, Psychologists, Psychiatrists, teachers and OTs all working in the field of neurodiversity.
7th November: Wellcome Centre for Cultures and Environments of Health Disability and the Arts Symposium, ESRC Festival of Social Science, Royal Albert Memorial Museum, Exeter