Autism Roundtable // Imagining Autism

Finding Your Own Group Of Weird

Prior to the Living with Autism roundtable I had my own pre-conceived ideas about what it meant to be autistic. I bought into the Rain Man ideology and believed that autism was predominantly a male domain, with the notion that to be autistic meant living in an isolated bubble. I thought that certainly within those constraints public speaking would be impossible.

Two women on the panel, Annette and Chloe, were diagnosed as being autistic in their mid and late thirties, but were articulate, confident and gave a clear and coherent insight into their world of autism. They explained how society expected them to conform to a neurotypical model of what it is to be human, and how this leads to a myriad of mental health issues: obsessive behaviour; anxiety and sensory overload. Being female better equipped them to act out the neurotypical role publically but in their private lives they had frequent ‘melt-down’ moments. Listening to their testaments it was apparent that the reason for their late diagnosis was that as women they were able to mask things better than their male counterparts. This theme of ‘masking’ was also explored in a short film by Sharif Persaud, The Mask. 

Chloe showed a list of all the words that have been used by others to represent her, all derogatory and representative of the expectations of a neurotypical ideal. She now has found her ‘own group of weird’ and acknowledges that she is autistic and that is a intrinsic part of her personality. It cannot be removed. The overriding message of the roundtable was one of acceptance and inclusivity. Autism has its own set of rules. As one of the parents on the panel learnt, great minds don’t always think alike and sometimes we just have to learn to play differently and allow everyone to find their own group of weird.

-       Sandra Elkins

Links relevant to this diagnosis:

Imagining Autism - University of Kent

National Autistic Society

Live It Well - Kent County Council

Mental Health Matters

Autism Research Centre

Bake Tell Tarts

What if you could use the nation’s love of cakes and the universal language of baking to open up conversations about dementia? This was the innovative, fun approach taken by Emma Harding in Bake Tell Tarts, a workshop at Normal? Festival of the Brain. 

Dementia - an umbrella term used to describe a range of conditions that affect the brain – is experienced by more than 850,000 people in the UK. And there are more than 200 types of dementia. These figures may seem surprising, and that’s because the condition’s impact on those living with, or caring for, those affected is still relatively unknown. 

Harding combines her love of baking and her position as a researcher at UCL’s Dementia Research Centre to push the conversation forward. After a brief roundtable, workshop participants brainstormed ideas as to who could benefit from learning more about dementia. Imagine the difference it might make if shopkeepers were more aware of the challenges a seemingly everyday task – shopping – presents to someone with dementia. Or if politicians kept this demographic in mind when allocating resources to health budgets and support services. For this to happen, we need to talk about the condition. 

And this is where the cakes come in. 

Through the practice of creating icing stamped with dementia-related phrases, I participated in conversations about the experience of living with the condition. These phrases: still the same old me, life is not overemphasised the idea that those with dementia do not want to be defined by it; that it is a part of their identity rather than the whole. 

Once complete, the cakes could be used outside of the workshop environment to continue the conversation, spreading awareness of the condition and, perhaps increasing empathy. 

Bake Tell Tarts’cake-led engagement is a delicious way of exploring, challenging and shaping understanding of dementias through the creative arts. It is especially relevant as cooking and baking is an activity that stimulates the senses, and for some with dementia, can trigger memories related to food – a powerful and positive experience. 

Cakes bring people together. How wonderful would it be if, alongside eating them, we could have a fuller, more realistic conversation about the experience and impact of dementia on society. 

- Charlotte Forfieh

Links relevant to this diagnosis:

BakeTell Tarts

Activities for People with Dementia Based Around Food - Social Care Institute for Excellence

Her Memory Fading, Paula Wolfert Fights Back With Food - New York Times

Dementia UK

5 Things You Should Know About Dementia - Alzheimers Society

University College London Dementia Research Centre

Created Out of Mind

Pint of Science

Two-thirds of the way through Pint of Science: Beautiful Mind, talk turns to Socrates and the pursuit of happiness. Familiar conversational territory for a regular night out. 

Jim Lockey invites us to join him on a journey of creation and loss. He recently built, then captained and sank a paper boat in local shallow waters. We are asked whether grief is merely a by-product of human evolution, whilst considering themes explored in Ode to A Nightingale by Keats.

Thou we’re not born for death immortal bird

No immortal generations tread thee down

Tim Rittman condenses years of his work analysing footage of task-free brains and the rigidity that develops in those with neurological degeneration into ten minutes. He likens the brightly lit areas on the scans to conversations at a cocktail party and introduces us to the experiments of William Lennox, a scientist who stuck pins into the jugular veins and carotid arteries of his volunteers.

Within her Weight installation, Aiste Janciute encourages participants to use all five senses as they explore words or concepts that weigh them down or lift them up.

Without gravity, the cosmos is everywhere

Dr. Shabhana Khan returns us to the laboratory and to work being undertaken there to increase efficacy in the treatment of anxiety disorders by balancing three key -amines. She works in the field of optigenetics. Endeavours include the use of light to control cells and tickling mice.

Charlie Murphy, resident artist with the Created Out of Mind project, firstly outlines the complex science behind attempts by the team to grow brains from the skin cells of anonymous volunteers then explains how she transformed this process into a series of dance moves and created her Neuronal Disco.

Work it harder

Make it better

Do it faster

Makes us stronger

Two pints of science and three shots of art. I’m left with thoughts around the poetry of the former and the rigor of the latter and how the two push and pull the other into new spaces. The next morning, I feel a slight sense of disorientation as I work to recall, unpack and re-order conversations from the night before. Perhaps only fitting when themes of life, death and the transition between these states are explored, whether this is done through the medium of science or art or over a drink with friends in the pub.

- Melissa Jacob

Links relevant to this diagnosis:

Pint of Science

Pint of Science on The One Show - 18 April 2018

Byron Vincent - Live Before You Die

The Love Affair Between Poetry and Science – New Statesman

The Neuronal Disco

What is the Common Ground between Art and Science? – Guardian

Ensonglopedia of Science // John Hinton

Featuring a song for every letter of the alphabet on a different scientific topic, the ambition of this performance is to make some impressively complicated ideas accessible and enjoyable for younger audiences. N is for neuron, P for Phylogeny and R for Relativity, which comes complete with a rap. And whilst as with any performance that aspires to present 26 moments of genius the hit rate varies,  the clarity of the scientific concepts is maintained throughout. Ensonglopedia of Science is couched in vaudevillian humour, and although the accent used for the ‘Cell Calypso’ is unfortunate, the other humour helps difficult ideas to stick.  

It’s goal of familiarising the young audience with the mechanics of scientific inquiry, foregrounding the central process of a hypothesis tested by experimentation, is vitally important in an era of fake news and alternative facts. As scientists have continually asserted, one of the biggest issues they face is the way that the public understand the language and processes of science. It is essential that both the public and politicians appreciate what is meant by terms like ‘theory’ and ‘proof’ in relation to the research of scientists. Correcting misrepresentations, particularly amongst the young, could help avoid the kind of debate seen around the validity of the science of climate change, for example. Greater scientific education can leave the next generation less susceptible to the distortions of research in the service of political positions.

Hinton is in a long line of performer/scientists that engage with the silly to help foster understanding, from Don Herbert to Bill Nye, a family friendly entertainer and educator. Manic energy and the breakneck speed with which he moves from one song to the next relates to the fizzing of electricity, the vastness of space and the breadth of human inquiry.

- Lewis Church

Links relevant to this diagnosis:

Ensonglopedia of Science - John Hinton

10 Scientific Ideas Scientists Wish You Would Stop Misusing - Gizmodo

The Association of Science Education

Engaging and Educating the Public on Environmental Science - BioMed Central

How to Make Hydrogen - Mr Wizard (Don Herbert)

Climate Debates on Television - Last Week Tonight with John Oliver

I WAS A TEENAGE CHRISTIAN // Katy Brand

You Lost Me is the title of a 2011 book by David Kinnaman, who runs a large market research company in North America. In it, he describes the widespread phenomenon of young people disconnecting from churches, and explores the reasons for their departure.

Comedian Katy Brand is pretty clear why she left the Buckinghamshire church she so strongly identified with from the age of 13. In I Was A Teenage Christian, she talks about her gradual disillusionment with leaders who banned Harry Potter, and who flatly disapproved of her choosing to take a degree in theology.

Hostility to debate is a clear problem identified in Kinnaman’s research among churches – particularly in the area of science. In Britain and America alike, there is often little choice for a young person faced with an apparent conflict between a fundamentalist, literal interpretation of the creation story, and the evolutionary science they need to pass their exams.

Yet in the early days of her church-going, Katy Brand reports feeling a delight that she was part of something that seemed important – delighted enough that she would attend church three or four times a week. She has said in interviews that she can see how fundamentalism can seem attractive and "exactly why" young people are being radicalised at the moment.

To understand why some do become radicalised is proving controversial for the UK government, however. Criticisms of a parliamentary report included a failure to define terms like radical and extreme, or to recognise the complex social factors that might cause anyone – not just Muslims – to radicalise.

But research with people of Pakistani and Bangladeshi origin living in the UK has revealed a mental health perspective to the debate. In his work with 600 people in Muslim communities, Professor Kamaldeep Bhui of at Queen Mary University of London found a positive correlation between extremist sympathies and being young, in full-time education, relative social isolation, and having a tendency towards depressive symptoms.

While radicalisation doubtless has many causes, this is important information for all looking to understand young people grappling with a sense that they are lost.

- Rebecca Mileham

I Was A Teenage Christian ran at Pleasance Courtyard until August 26th - https://tickets.edfringe.com/whats-on/katy-brand-i-was-a-teenage-christian-2

David Kinnaman’s research company: https://www.barna.com/research/

Interview with Katy Brand: https://www.theguardian.com/stage/2016/jul/04/katy-brand-teenage-christian-comedy-interview

Home Affairs Select Committee report into Radicalisation: http://www.publications.parliament.uk/pa/cm201617/cmselect/cmhaff/135/13509.htm

Mental health aspect to radicalisation: https://www.newscientist.com/article/mg22630160-200-radicalisation-a-mental-health-issue-not-a-religious-one/

Depression a factor in radicalisation: http://www.telegraph.co.uk/news/uknews/terrorism-in-the-uk/11164182/British-jihadis-are-depressed-lonely-and-need-help-says-Prof.html