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

SPOONFACE STEINBURG // Top Right Theatre

Spoonface knows that people in operas die beautifully and she wants to die beautifully too. Diagnosed with autism, and later terminal cancer, the child walks along silver linings in this hour-long monologue. Tackling the difficulties of development disabilities and terminal illness, Spoonface’s optimism never falters, as the backing track of Puccini’s ‘O Mio Babbino Caro’ lulls us into a romantic view of death.

More than 1 in 100 people in the UK live with autism, and they often have difficulty communicating and reading emotions. Because of this, Spoonface’s language is simple. Linear trains of thought are very clearly laid out, in order to prevent the world from being overwhelming.

In the periphery of Spoonface’s monologue is recognition of the difficulty of caring for an autistic child and how that is part of the reason for her parents’ split. While the common claim that 80% of autism families divorce was found to be false in a recent study, having an autistic child without doubt puts extra pressure on a couple. David Mitchell writes about telling people his child’s diagnosis. ‘The replies come quickly but read awkwardly: condolences are inappropriate in the absence of a corpse, and there aren't any So Sorry Your Offspring Has Turned Out Autistic e-cards.’

Named after her unusually rotund face, Spoonface tells us about her short life. Lee Hall, most famous for Billy Elliot, wrote this monologue for radio in 1997 but here Sasha Brooks performs as Spoonface in pyjamas, radiating innocence and vulnerability. Though covering desperately sad topics, this monologue tries to be optimistic, picking up on the positive parts of this life dotted with misfortune. Spoonface values her individuality, saying, ‘to be different is to be who you are’. Mitchell, too, is sympathetic to this idea, noting that gradually you discover that each child with autism ‘possesses its own singular beauty, its own life-enriching experiences.’

- KW

Spoonface Steinburg played at theSpace @ Jury's Inn through August 27 - https://tickets.edfringe.com/whats-on/spoonface-steinberg

Information about autism http://www.autism.org.uk/about/what-is/asd.aspx##Prevalence

A review of the original radio play http://www.independent.co.uk/arts-entertainment/dont-be-afraid-of-spoonface-1165152.html

Autism spectrum disorder http://www.nhs.uk/conditions/autistic-spectrum-disorder/pages/introduction.aspx

Autism’s effect on a family http://www.aamft.org/members/familytherapyresources/articles/08_FTM_3_18_22.pdf

Divorce rates of parents with autistic children http://www.telegraph.co.uk/news/health/children/7926161/Parents-of-autistic-children-more-likely-to-divorce.html

David Mitchell: Learning to live with my son’s autism https://www.theguardian.com/society/2013/jun/29/david-mitchell-my-sons-autism

I AM NOT A CHILD // Dale vN Marshall

As the wall text of this exhibition acknowledges, the graffiti practiced on the streets of Bath and Bristol by Dale vN Marshall preceded his sectioning in the Cornwall County Asylum in 1999, but the event exerts a continuing resonance on his practice of art. His spray-paint work on the walls of public spaces transferred to private galleries and international museums as a gallery artist, but maintains its still-street aesthetic. In this exhibition at the Scottish Storytelling Centre, Marshall has drawn on his own experiences as a young person in the mental health system to produce the paintings, as well as on a series of conversations and workshops with young people in Edinburgh dealing with ADHD, autism and circumstantial trauma facilitated by drama programs and community organisations. 

These young people face immense difficulties just being young now, as the social contract of ever increasing living standards promised by previous generations frays around the edges. Diagnoses of mental ill health amongst young people have skyrocketed, and when one in ten young people between five and sixteen years are struggling, it is worth acknowledging that it might also be due to the pressures of life that impinge on their development. The world intrudes on the stability of those starting to establish themselves. These dense bands of highlighter colours that drip and trail from the canvases on display in Marshall’s work include harshly scrawled statements of neglect and despair from his young workshop participants. “I’m sick of people telling me who I am and who I should be” and “Give us a voice and we will be heard” bracket the abstract shapes and colour fields. Parental pressures, support, work and education deficiencies, digital expectation and the pressures of neoliberalism on families mount up to a difficult-at-best process of learning to live. Through working with artists, and becoming artists themselves, young people have a space for expression and engagement separate from the social imperative not to learn what is not directly applicable to later life. Street art is an intervention into public space, just as art can be an intervention into the development of good mental health.

- Lewis Church

The Acting Scene (Edinburgh based Drama Company) – http://theactingscene.co.uk/

Mental Health Statistics (Young Minds) - http://www.youngminds.org.uk/training_services/policy/mental_health_statistics
 
Supporting Young People’s Health and Wellbeing (Scottish Government Policy Summary) –
http://www.gov.scot/Resource/0041/00418332.pdf
 
Street Art News - https://streetartnews.net
 
Dale vN Marshall Q&A – http://www.tracscotland.org/scottish-storytelling-centre/news/qa-dale-vn-marshall

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