A guest post by Alex Forshaw

First published on My Autistic Dance

I’m very attached to this scarf. What a strange thing to say! After all, it’s not tied to me or glued to my hand. Except…

Even without looking at it or touching it–if I appear to ignore it for days at a time–it’s here with me. It’s connected to me, attached by invisible strings of memory and emotion to my mind and my heart, to my very soul.

I look at it with eyes that span decades, seeing it adorn my mother in far-off places and times. The threads of the fabric are intimately woven with the threads of my memory, inseparable.

When I hold it I am holding my own history, holding a piece of my mother close to me, holding her even though she’s been gone all these years. Gone from life perhaps, but still very much alive in me.

Objects and memory are entwined, carefully packaged, wrapped in each other so that they will be protected and preserved.

Of course it’s still a scarf, not a museum piece, and I wear it often when winter’s chill is in the air. With its gorgeous crimson, russet and bronze, and the silky sheen of its fabric, it whispers seductively to my sense of beauty and I love it in its own right.

It would feel wrong to let it languish in a drawer, unseen. My mother was very sociable, having a wide circle of good friends, and enjoyed being around people. To see and be seen. And so it feels fitting that I wear this scarf, let it be seen.

Objects can be cherished and cared for while also being used. To me their value comes not from being pristine, but from having a history. Each association, each memory, each attachment adds some intangible value beyond price.

In the case of my mother’s scarf–now my scarf–the value might only be fully apparent to me. Others might admire it as a desirable accessory, but its deeper connections are mine alone. To me it’s unique, priceless, irreplaceable.

I could never let it go, except to my daughter in her turn. It represents a family bond back through time. This object is tied in to my fondest memories, embroidered with the love between my mother and me, and I’m far too attached to part with it.

The Duck: Rhiannon Lloyd William’s Play reviewed by Sonia Boué

an origami duck sitting on top of a theatre playbill

Photo by Alex Forshaw

The Duck, a production by Autact Theatre Company, is a remarkable play, and, going to see it at the Stroud Theatre Festival last week, felt like a significant cultural moment.

Playwright, Rhiannon Lloyd-Williams is a late diagnosed autistic woman, and she  forms part of what has been termed the ‘lost generation’ – I count myself among their number. Our diagnosis’ have been delayed into adulthood through cultural ignorance about autism as anything other than a series of stereotypes which exclude us. I won’t list them here, but suffice to say that males, savants, and geeks have dominated the cultural landscape (through no fault of their own, I might add).

Before continuing I want to state that this review is not the place to detail issues of gender identity within our community (which have also fallen under the radar). This play is not about women, it’s about one woman.

The play opens at the moment of recognition. I’m a duck! The duck in question is a metaphor for autism, and for 50 spellbinding minutes the audience is immersed in the thought processes of an autistic mind. For some of us (autistics) this is familiar territory and we can insert our own detail and nuance into the narrative. For non-autistic audiences this is instructive, in the best sense of the word. The play is not didactic, and the learning arrives through the offer of empathy – Lloyd-William’s brilliance is that she enables the non-autistic person to inhabit her mind, to loan it (if you will) for a brief yet vivid moment.

This is a one woman play, and actress, Lucy Theobald, gives a quite extraordinary performance. Coached by Lloyd-Williams herself, there is a sense in which she acts as her avatar. Theobald is her physical stand-in, complete with ‘stims’ (the gestures we often rely on to regulate emotion and sensation), but also allows the playwright the necessary distance to write from the gut. There are no punches held here.

As the diagnosis unfurls we are treated to the rawness of a lifetime of alienation which is unknown in origin. The torture of autism as a condition not yet revealed is really in the not knowing, which provides a vacuum for self-blame to be sealed in as tightly as superglue. My own experience is that unlocking this knowledge is redemptive. It was never autism that troubled me. I  now understand that my difference is simply  another way of being human. Not all autistics will share my sentiments but we can unite on the core message of this play.

I sat and squirmed as the labels which had been conferred on our heroine in the place of ‘duckness’ were rolled out in a devastating sequence. My own label was ‘naughty’. My poor parents were not to blame. They weren’t to know why I ‘disobeyed’ them royally – and did the opposite of everything they asked me to – and to their great credit they still found a way to love me.  Such labelling and misunderstanding of our behaviours can be immensely damaging and even threaten our emotional survival. Our heroine makes a passionate plea to peel back the labels in order to understand and accept us.

My favourite passages of this one act play are when Lucy Theobald revs up the theatrical encounter, breaking the forth wall. Autistics are supposed to struggle with communication – and so we do at times, especially when asked to do so in conventional manner. Lloyd Williams breaks this assumption with the sheer articulacy of her writing, Jo Loyn’s direction of Theobald to engage us with eye contact and pointing underlines the point; and so the table-turning begins! Audience members are questioned (rhetorically), and drawn in to the heart of the action. We’re both inside her head and onlookers – I honestly don’t know how the author did this.

In many ways this is a confrontational work, but the beauty of the writing is that the voice is gentle and the audience is held. I like to be in two places at once. I’m prone to wriggling in my chair and casting my eyes about the room. I am also fond of observing faces and was treated to a section of the front row, which curved around almost facing me (albeit from some small but helpful distance, as I sat at the very end of the middle row by the door). I saw three things; wonder, care, and compassion. I might have glimpsed discomfort (but it was fleeting and productive, I felt).

What you want in a production like this is to feel safe while being challenged, and it’s a fine balance to achieve; so it’s all the more impressive to find it so deftly handled in a debut play from an emerging writer.

What I saw on those faces, now embossed in my minds eye, were the flashes and flickers of shifting emotions as Theobald dealt out the play’s denouement. A twist autistics will be familiar with (but no less thrilled by) and which will leave unsuspecting non-autistics gasping. No spoilers from me.

I am reminded of my own debut speech as an ‘out’ autistic person in which I declared myself a person in translation. My audience feedback was that I had changed perception – that they would never think in quite the same way again.

This is what I think the incredibly talented Rhi Lloyd Williams has achieved with The Duck – a paradigm shift. As a blogger on autism (at Autism and Expectations) she is immensely popular and widely read on a global scale because she has a rare capacity to straddle neurologies with writing that is also beautiful. She is also a poet and a performer.

As an autistic person who (disclaimer) is also a friend, my one wish for the play (in the moment) was for the author to act the part. I quickly saw why for many practical reasons this wouldn’t work. The remove, in working with an actress rather than making this a performative piece for the author, reveals itself as the production’s strength. Theobald’s embodiment of Lloyd William’s words is an extended act of empathy, as I suggest at the top of this piece. She leads the audience in a parallel act.

This is not the usual autism shtick so many autistic people have come to dread, which only serves to feed unhelpful stereotypes. We’re tired of Rainman and The Curious Incident of the Dog in the Nighttime. This is something wholly new. An authentic voice has emerged, and it’s my fervent wish that The Duck can be seen and heard in many venues across the land.

The Arts Council England funded Museum for Object Research and WEBworks collaborative project, NUNO (Neither Use Nor Ornament), is also proud to count Rhiannon Lloyd Williams among our WEBworks creatives as Poet in Residence for the project.

Witten by Sonia Boué

Sticks and stones are true friends – by Jon Adams

a drawing of an open zip from which a stream of black letters fall

Identity First Language

I grew up loving words and their meanings. From a very early age they gave me the means to quantify and describe an often puzzling world that spun around me. Sometimes this was in an unchosen silence, unable to share when I couldn’t cope with the outside world, an internal pleasure just for myself. Being synaesthetic I often found these descriptors were pale shadows of reality or just didn’t exist so I invented my own and appropriated others. Also a child I was continually asking questions about the meanings of things and secretly building this fragmentary detail into my own bigger picture, a ‘world’ taxonomy that would come in very useful later in life. To me as a child, language meant life.

I’m not saying it was all plain sailing as my ability with language and word lead to issues at school. Whilst I could answer questions quite eloquently when able, my written work was poor and I often often opted for words I could simply spell rather than those I really needed. I was often called stupid or I would hear the word ‘lazy’ used. (actually I’m just dyslexic and autistic and it was never picked up.) I sought solace in nature and especially geology, becoming a palaeontologist – stones don’t lie or let you down.

One day aged 11, my teacher tore up one of my pictures up in front of the class because I spelt my name wrong. What cut me even more than the loss of a single image was the fact that he said ‘I would never amount to anything’. That day my dignity and dream of becoming an artist died. I learnt that these precious things called words could hurt and that ‘sticks and stones may break your bones but words will never harm you’ was a complete lie.

It also caused trouble in the playground because as a teacher had humiliated me ‘with words’ it had seemed to give permission to my fellow peers to do the same and some did with glee. What I really hated though was that I felt misrepresented, that they hadn’t given me a chance to prove myself or my ‘inner me’ that I soon learnt to keep hidden. I knew I was different and so did they. Oh and by the way I don’t have a normal person inside me longing to escape  my inner me is 101% autistic.

Language can be either heaven or hell, and for people who don’t seem to fit a society or are different, it may become a clear and present danger. If something is said again and again and again even though it’s untrue or a stereotype or a misrepresentation it soon may become an ‘apparent truth’. Words can be used as seeds to engender hope within a single person or as a seed of desecration, repression and othering in preparation for the loss of generation. History has shown us where relatively simple words of hate can lead. One powerful group in a society deeming ‘others not human’ and ‘useless’ thru the media or policy. We should remember this every January on Holocaust Memorial Day for example.

Mostly I don’t really have an issue with the word autism but I do have a problem with the way it’s often used. Until we change the traditionally used wording towards autistic people to the preferred language used by autistic people, the stigma and othering I feel will not stop. I don’t ‘live with autism’ for a start, I actually live with my wife and two cats. I didn’t ‘acquire autism’, it’s not a handbag or a pair of shoes. I don’t ‘suffer from autism’, I just have to suffer the attitudes of people who seek to misrepresent me or plainly don’t understand the harm they cause us. I do however live with and suffer from PTSD caused by poor attitudes towards me as an autistic person.

It’s very easy to seem comic, flippant and literal about these things but language engenders attitudes and attitudes engender the way you accept or reject people. I’m not a person ‘with autism’ I’m an autistic person. It’s not separate from me because that suggests that I can lose it, cure it or rid myself of it. What’s worse is it implies that others can do this to me. language Imposed on any other minority would be seen as unacceptable so why does it seem such a ‘free for all, towards autistic people?

I personally feel that that the language used towards us should be driven by autistic people, ‘our language our narrative’. I also feel you can tell the attitude of an organisational or individual towards autistic people by the language they seem to use. If an autism organisation doesn’t listen to the voice of autistic people and carries on using language that we may find offensive that simply says ‘we don’t care about your opinion’. Do we need organisations ostensibly for autistic people who don’t care about our opinion?

I also really dislike the way some come back at autistic people who choose to use identity first language with a ‘cancer’ argument. I won’t say much here other than it’s not acceptable and is I feel disrespectful to all concerned. We are talking two completely separate things here. The analogy is incoherent and again shows a lack of understanding on behalf of the people who use it.

I feel there is also a lot of misunderstanding around the use of the term neurodiversity and it seems to be becoming a bit of a buzzword without people really understanding it’s taxonomy. Neurodiversity encompasses all of us like biodiversity does the life around us on this planet.

A single animal cannot be described as being biodiverse, a cat cannot be everything at once but it is part of biodiversity. likewise a single person cannot be neurodiverse as they can’t be both neurotypical and neurodivergent at the same time. However a group of people can be neurodiverse just as a specific population of flaura and fauna can be biodiverse.

People often ask me what’s the biggest change we can make towards autism acceptance or understanding and I say it is modifying the language that people use towards us. And after that they need to except that they don’t understand what goes on in ‘our heads’ and listen to what we need not what they project on us, double empathy. Both these go hand in hand. If an organisation refuses to listen to autistic people and won’t change their language or perceived attitude then they’re not an ally, in fact they’re part of the problem. Conversation between all sides is so important as we won’t obtain autistic ‘emancipation’ without all agreeing but that needs a common language.

I don’t need modifying to be a part of our society rather than apart from society. I just need accepting the way I am, something that seems incredibly hard for some people to get their head around. Society should be made ‘fit for us’ not for us to have to ‘fit in’ with society’s wishes or traditional stereotypes and misinterpretations. Society really should except and embrace difference, along with the self-descriptive language chosen by any minority’s concerned.

Yes we are all different, an incredibly positive and enriching thing and for me confirms the fact we are all just simply human.

The Start

Sonja Zelic

The Start
Sonja Zelic – The Start

Raised up like this she inhabited another world. Looking out over the back of his shoulder while being carried forward. Lights blurred and streamed away from her like a Richter painting. She was being torn away from something but could not remember what. Stretching out her arms to try and grab something, the streaming lights were not solid and evaded her tiny grasp. Was it then she decided her hold on the world could not compete with the forces that drove it forward? Would she always be looking behind for something she had just lost? Aware then that she had been holding onto something, but now she was not. She screamed, howled, from the pit of her stomach and out. It filled the Richter paintings, it tore into them and they responded screaming, howling, screeching till all their colours became solid like glass and shattered into a million fragments.

A sense then, of a colour, a soft yellow, pale tactile yellowy something. She could not remember what it was she had lost.


Sonja Zelic

Sympathy for the object – an autistic perspective.

I have felt sympathy for objects since I was a very young child.

This has caused me a huge amount of sadness and anxiety over the years. I feel sad for the photograph that gets pushed to the back of the display cabinet, the guitar that doesn’t get played anymore, or the once loved camera that has now been displaced by a newer one. Continue reading