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

HAPPY YET? // Open Mind Productions

“Why can't you be happy?”
“Why can't you make something of yourself?”

Such are the questions asked of Torsten, the central character in Happy Yet?, by his bewildered family: questions for which there are no answers. Torsten has an unspecified and undiagnosed mental health condition that sometimes makes him incapable of getting out of bed and sometimes transforms him into a glitteringly energetic compulsive liar. He's already been rejected by his parents as the runt of their litter, whose only problem is a failure to “discipline” himself. When the play takes place, he is approaching 40 – but pretending to one of his many girlfriends to be nearing 30 – and living with a brother, much to the dismay of his sister-in-law, who is generally required to clear up the mess that his spurts of whirling devilry leave behind.

“Nothing he does makes any sense.”
“I don't know what he's thinking.”

The playwright, Katie Berglof, is young (she's studying at Edinburgh University), but writes from experience: her programme note mentions an uncle, “misdiagnosed and misunderstood”, who lived with her family “until his death”. It's easy to read Nina, the young girl on stage throughout Happy Yet?, as a representation of Berglof herself. Nina is the only character for whom Torsten isn't a problem: they play chess together, he helps her with her Ibsen homework, she chats with him non-judgementally. Seeing the action through Nina's innocent eyes encourages the audience to be less judgemental, too, especially when events become far-fetched (for instance, when Torsten persuades a police officer on duty to join him in getting drunk). Ibsen and his Swedish contemporary Strindberg hover in the background throughout, Berglof reaching towards them in her attempt to transmute the personal into the state-of-a-nation.

“All you do is throw pills at problems.”
“You can talk about these things in New York – not in Sweden.”

Throughout the play, Berglof makes jagged comments about (the paucity of) mental health provision in Sweden; she includes one character who works as a mental health professional, and makes her grimly unsympathetic. In Finland, alternative treatments for psychosis under the rubric Open Dialogue avoid medication and instead include family and friends in a circle of care, absorbing neurodiverse mental health into the community. By such measures, Torsten could be receiving the best care possible – except that, since the family themselves lack support, it's insufficient.

- Maddy Costa

Happy Yet? is on at 11.50 at Surgeon's Hall until August 27th. Wheelchair Access, Level Access, Wheelchair Accessible Toilets - https://tickets.edfringe.com/whats-on/happy-yet

Swedish mental health provision under attack: http://www.thelocal.se/20150818/swedish-mental-health-care-blasted-after-stabbing

Sweden's place in the global happiness index: https://www.theguardian.com/science/blog/2014/may/14/mental-illness-happiest-country-denmark

On compulsive lying disorder: http://www.compulsivelyingdisorder.com/what-is-compulsive-lying-disorder/

On bipolar disorder: https://www.rethink.org/diagnosis-treatment/conditions/bipolar-disorder

On Open Dialogue in Finland: http://www.communitycare.co.uk/2015/02/12/open-dialogue-care-model-put-mental-health-social-work-back-map/

and: http://www.mindfreedom.org/kb/mental-health-alternatives/finland-open-dialogue

Open Dialogue in London: http://opendialogueapproach.co.uk/

Madlove, artist the Vacuum Cleaner's new approach to asylum: http://madlove.org.uk/

EAT. SLEEP. BATHE. REPEAT. // Act One

The title of Eat. Sleep. Bathe. Repeat refers directly to the routines that are as vital to the residents in a home for men with “low-functioning” autism as they are to the staff. The drama begins when these routines are interrupted by the arrival of James, a young man who needs holiday work but has no experience of caring for people with disabilities.

The narrative follows James as he gets to know everyone (including himself), and as such it adopts his naive neurotypical perspective. This, coupled with the fact that much of the dialogue is comedic, makes for discomforting watching at times. While non-autistic characters - particularly James - develop during the show, autistic characters are much less dynamic in the narrative. Their actions and changes in mood are often presented as random, inexplicable and dangerous. The play is based on true events but while it may be drawing on real people and experiences (albeit seen through a neurotypical lens), it risks falling back to one-dimensional portrayals of autism.

However, by presenting five characters with a variety of traits and needs, Eat. Sleep. Bathe. Repeat shows some of the diversity of autism even within the low-functioning end of the spectrum. And while most of the residents seen on stage are non-verbal, the play does succeed in giving each of them a distinct character, perhaps again reflecting the people who inspired it.

- MR

Eat. Sleep. Bathe. Repeat. is on at 20.25 at theSpace on the Mile until August 13th. Wheelchair Access, Level Access - https://tickets.edfringe.com/whats-on/eat-sleep-bathe-repeat

Cian Binchy, an autistic performer, brought The Misfit Analysis to the Fringe last year: http://www.independent.co.uk/arts-entertainment/theatre-dance/news/we-need-autistic-actors-playing-autistic-roles-on-stage-says-curious-incident-adviser-10454728.html

Sara Barrett calls for authentic autistic voices in popular culture: https://www.theguardian.com/childrens-books-site/2016/apr/03/autism-voices-books-awareness-week

An interview with Steve Silberman, author of Neurotribes, including his dislike of the term “low-functioning”: http://www.npr.org/sections/health-shots/2015/09/02/436742377/neurotribes-examines-the-history-and-myths-of-the-autism-spectrum

Information about autism from the National Autistic Society: http://www.autism.org.uk/

WE LIVE BY THE SEA // Patch of Blue

As I enter the theatre space and sit down a young woman asks ‘Who hasn't had their shoes touched?’ I raise my hand and the young woman scuttles into the row and touches both my shoes. This is Katy.

We Live by the Sea is a story where one of the people has autism but it is not about autism. This latest work by Patch of Blue Theatre Company weaves story and pathology without being definitive. It is a story of tenderness, hope, compassion, honesty and understanding.

Katy is diagnosed as being on the autistic spectrum. Her mother left the day she got diagnosed and her father left in search of ‘work’. This is a performance written as much in metaphor as the straight language of the everyday. It is a story of lost people looking for the things they lost, a girl with autism and her imaginary dog, her older sister Hannah and Ryan, a new boy in town escaping the city.

We are told Katy likes the truth and routines. We learn the days she has fish fingers for tea, Saturdays watching Ant and Dec, the colours assigned to each day and that she has a tank of sea water named Gerald, in fact all her possessions have names. Katy makes up stories to mediate the transitions through the moments in life and it becomes clear she has repetitive actions designed to self-soothe. Her imaginary dog Paul Williams helps her through difficulties and they share a secret language. She goes to mainstream school where she is bullied and lost her extra support due to funding cuts.

Hannah could have gone to university ‘if only things were different’. In this respect she is one of the many young people who have put others needs before their own. She is part of the estimated 350,000 young adult carers (18-24) in the UK. This number is steadily growing, with a significant burden falling on child carers, currently 166,000 in England alone. The impact of being a child and young adult carer can be wide reaching from being bullied, social isolation through to a lack of opportunities and poor health outcomes. Many young carers are not known to authorities.

Katy is unusual in that as a female she already has an Autistic Spectrum Disorder diagnosis at 15. Autism is a disorder with a perceived gender bias, in that more boys are diagnosed with it than girls. Whilst overall prevalence is increasing for both genders, more females are being diagnosed than ever before.

Historically women are often repeatedly misdiagnosed and mis-medicated before a successful diagnosis and treatment is employed. Part of the reason for this is the expectation of traditional societal gender roles and traits. However, psychiatrists were not necessarily looking for Autism so may have diagnosed, for example, the Eating Disorder manifest rather than the autism behind it. Finally women tend to be much higher functioning on the spectrum of the disorder, combined with a better propensity for ‘masking’ the disorder to ‘fit-in’ within the normative society. (AM)

We Live by the Sea is on at 16.30 at Pleasance Courtyard until August 29th. Wheelchair Access, Level Access, Hearing Loop, Wheelchair Accessible Toilets -  https://tickets.edfringe.com/whats-on/we-live-by-the-sea

Gender and Autism: http://www.autism.org.uk/about/what-is/gender.aspx

Autism in Pink: http://www.specialneedsjungle.com/autism-in-pink-helping-to-identify-undiagnosed-girls-with-asd/

The Lost Girls: https://spectrumnews.org/features/deep-dive/the-lost-girls/

Young Carers: https://carers.org/about-caring