As we are in a third lockdown, I have been reflecting on the impact of Covid-19 on the neurodiverse community and looking into pieces of research that have investigated this over the past year.

Below is a quick snapshot of the key issues from some of the research I have found. If you have any more pieces of research to share please email me:.

Autism

NAS survey– over 4000 respondents – found that:

• 9 in 10 autistic people worried about their mental health during lockdown; 85% said their anxiety levels got worse
• Autistic people were 7 times more likely to be chronically lonely than the general population*; and 6 times more likely to have low life satisfaction** (comparisons using ONS data)
• 1 in 5 family members responding to the survey had to reduce work due to caring responsibilities
• 7 in 10 parents say their child has had difficulty understanding or completing schoolwork and around half said their child’s academic progress was suffering.

Colizzi et al survey– over 500 participants from Italy – found that:

• 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

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.

Dyslexia

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.

This is part 2 of the blog series on Ginny’s forthcoming book due this month!

Figure 6: Prototype diagram from our Stimming article. Read the full article here.

Figure 7: This figure considers the function of diagnosis of psychiatric conditions

Figure 8: The below diagram is a conceptualisation of some antecedents of autistic behavioural states versus autistic traits.

Figure 9: This diagram helps to explain confounding in epidemiology – correlation is not causality!

Figure 10: Our review in Molecular Autism shows 85% of autism research from North America and Europe – we need more international studies!

Figure 11: This figure is a representation of thinking about the various autism activist movements as waves

• “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.”

Read the full report here: Autistic Voices on Film

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 11^th 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 4^th 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.

We have had some useful feedback from our films but more comments are always welcome. Here’s a summary:

Sharon Brooks, Sheffield Adult Autism & Neurodevelopment:

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.

Do visit our films and keep sharing: https://www.youtube.com/results?search_query=%23ExDxFilms 

#ExDxFilms

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

11th November: Cornwall Film Festival, The Poly, Falmouth. Join us and click attending on the Facebook event .

After their journey across the Atlantic, J.A.’s paintings have finally been framed and are now proudly hanging in our building at the University of Exeter.

We love both these paintings and think they are excellent and thought-provoking additions to our hallways.

Thanks again to J.A. and his family for arranging for us to pick up the paintings and meeting us in Canada.

Thursday 20th June marked the fourth screening of our Exploring Diagnosis Films. This time we were hosted by Calling the Shots (CTS), the Film Production Company involved in the making of the #ExDxFilms. The venue was Spike Island in Bristol, home to CTS.

We really enjoyed the insightful discussion that interspersed and followed the films. It is important to us that our films have impact so we are particularly please when we receive feedback indicating that the films do appear to be stimulating people to consider various aspects of autism and neurodiversity.

So far, we have two more screening events lined up for this summer (information to follow) and hope to also have the Films available as Open Access online before the Autumn. Watch this space!

We are taking our films International this weekend! The #ExDxFilms will be shown at the Mainly Mozart and the Mind Annual Symposium in San Diego on Sunday (2nd June).

This day of the symposium aims to share practical strategies to help families and professionals amplify and expand interests, strengths or talents of autistic people. The day’s talks will culminate in an interactive expert panel – on which our team member Jean Harrington will sit – addressing questions from the audience.

We’re very excited to see how our films will be recieved at such an important festival where the audience will include prominent autism researchers and activists.

Full festival timetable can be found here: https://mainlymozart.org/mozart-the-mind-2019-calendar-events/

What a success!  Exploding into Old Billingsgate on Thursday evening the Diverse Minds Gala, run by SAP, was an amazing event raising over £77,000 for the National Autistic Society and Ambitious About Autism.

Trailers for our #ExDxFilms were beautifully displayed on large screens in the exhibition area for the entirety of the evening.  This was our first external event and we were very excited to be showing our work to over 350 supporters of the SAP event.

Meeting Eddie Callis, whose animation features in our films, and seeing his exciting new artwork were such a delight.  For those of you who might like to have an opportunity to see his paintings and craft work Cornwall has its ‘Open Studios’ event running from the 25^th May to 2^nd June.  We also had the opportunity to meet two other artists from The Art of Autism, Mahlia Amatina and pencil artist Chris Baker who are both, like Eddie, amazingly talented.

All in all it was a wonderful evening and we would like to sincerely thank SAP for giving us a great opportunity to bring our work to such an interested audience.  We would also like to particularly thank Georgy Southall from SAP for being so helpful and such a great host on the evening and Gareth Skade from ICF Next for setting our trailers up so beautifully.

As we mentioned in our previous blog we have lots more festivals planned for the summer as well as a big online launch of the films later in the season.  To make sure you don’t miss the date keep logging into this blog and our Twitter (@ExDx_UoE).