Sia – Why we need to start trusting autistic women
Elinor Rowlands tells the arts and music industry and current cultural landscape why they need to begin trusting autistic women/womxn.
There is something truly fundamentally wrong when we cannot name Neurodivergent leaders in the industry who are women/womxn.
Yet there are many, they just haven’t been given the opportunity, space or platform yet.
My residency at Drake Music is extremely rare because I never get chosen at interview – I get to lots of interviews off the back of my applications, but when I am interviewed in person, so many neurotypical panels can see something in me that I can’t and I flounder and sometimes go mute. I trip up on my words and the block between my mind and my mouth is like a room I can see in an upstairs apartment building but simply can never connect them. There is no corridor for the words or messages to go down.
But I can do the work.
I am that person in the written application.
But so many people can’t trust words, they need to see the human form. But they’re disappointed when they meet the human form. It’s not how they expected a neurodivergent woman to be.
That is why my residency at Drake Music is so extremely rare because I was chosen after they met me in person, twice, once in a room and the second time over Skype, and a third time on the telephone.
“My neurodiversity is always a problem for neurotypicals. Particularly for neurotypical people in the music industry and the arts. It’s not a problem for me because I can do the work, often to a prolific scale, but I struggle without effective access and I struggle without trust. I struggle without the corridors and the bridges.”
My neurodiversity is always a problem for neurotypicals. Particularly for neurotypical people in the music industry and the arts. It’s not a problem for me because I can do the work, often to a prolific scale, but I struggle without effective access and I struggle without trust. I struggle without the corridors and the bridges.
Photograph by Joanna M.
Sia & Trust
Charlotte Colombo wrote a brilliant article about Sia ‘s new film in the Metro on Sunday 22nd November:
“Like her costume, Maddie Zeigler will be able to remove her autism after a long day on set and continue to live her neurotypical life. People on the autism spectrum can’t do that. When I’m having a meltdown or experiencing sensory overload, I can’t just take my autistic costume off. I have to live with it.”
This Lockdown, Drake Music experienced me in severe meltdown. They have experienced my voice raise octaves. They have not always trusted me, but they are open to learning and I am still here in my residency with them though it’s been a struggle for both of us sometimes, because they are neurotypically led and I am neurodivergent. We clash due to language barriers and my barriers with emails, thinking and technology.
I had applied to do this residency to get out of my bedroom and travel nationwide to meet and get to know them, their partner organisations, people and projects. Instead, Lockdown forced me back into my bedroom and meetings were often regimented to time limits and the flow of expressively free working did not occur as much as craved. But, they recognised I was in distress and experiencing barriers and organised for me to have access in the form of a Music Tech and Creative enabler paid for by Access to Work.
This is why, Colombo hits the nail on the head when she says that people on the autistic spectrum (and also those with other neurodivergent conditions) “simply don’t have the luxury that Maddie Zeigler has” with taking off her costume or mask at the end of the day. We have to live with it.
Autistic women have to live with the persecution and the expulsion, often being fired from jobs they excel at due to behaviours or traits they cannot control, pushed out, and excluded from so many organisations and opportunities.
Because of Neurotypicals’ perception of low functioning and high functioning autistics then autistic people are never believed or trusted when they are perceived as high functioning and this can be very damaging to the music and arts careers of so called high functioning autistic women who struggle - and really struggle against so many access barriers.
Neurodivergence and the arts
In the arts alone I have reached out several times to charities that invest in “learning disabled and autistic” people and have received no replies because I am deemed not “the kind of autistic or learning disabled person” they help.
It was a conversation though with a fellow neurodivergent that made me realise, that’s it!
She told me, “They don’t want you because they can’t exploit you.”
And perhaps this is incredibly controversial right now, but perhaps that’s why the so called high functioning autistic women get kicked to the kerb for opportunities – we get overlooked because we are deemed as problematic, not inspiring and this is why so many organisations reject or exclude us. And why we are so often demonised.
So we remain stuck in our bedrooms.
We may be the women who excelled at university but who couldn’t for whatever reason survive in the “successful jobs” field and pretty soon by our mid thirties we are all having massive burn outs and breakdowns, going on extended periods of sick leave. Perhaps for many of us those breakdowns end up also being breakthroughs, but one thing is certain, it is rare to find any opportunities, or support out there for us – autistic and neurodivergent women – where we are trusted to lead, acknowledged for our contributions and truly heard. Where we are commissioned and paid for our work.
Neurotypical expectations
Even neurotypical people who give neurodivergent women opportunities still expect neurodivergent women to behave in neurotypical ways.
Many times I have experienced scary conflict with so called Support Workers who know I can only afford them for a certain amount of hours, but press me for more and never leave at designated times knowing that I find it difficult to push them out or end the contact.
They continue to act friendly towards me, they will repeat my words back to me, when all the while they had emails or contracts in writing that said how many hours they were paid for.
I cannot meet their social cue expectations and need my autistic support at the Autistic Society to identify when they’re taking advantage of me. Usually, i already know they are, but it takes me a while to speak up and out about it because it’s so embarrassing, to own up to the fact that it happened again. Financial abuse is happening again and I can’t see it until it’s too late because I’m too trusting.
I am expected time and time again to be neurotypical and I am not believed when I remind them of my barriers, instead I am crucified for my traits.
“Tweeting her justification for not casting an autistic lead character, Sia said that she had tried working with a non-verbal girl on the spectrum, but that the actress had found it ‘unpleasant and stressful’ and that it would be ‘cruel, not kind’ to cast someone with a similar level of functioning. In my mind, this translates to: it’s too difficult to make the necessary adjustments that would make the filming process easier for an autistic actress.”
Yet I have to go one step further than Colombo’s meticulous observations and suggest that everyone on the autistic spectrum is different. I’m baffled that Sia couldn’t find an autistic woman actress to play the role as I could introduce her to about 30 if she knocked on my door.
This goes back to how Sia and other neurotypicals like to present disability and autism on the screen, or in art exhibitions, or even in the music industry, as something to exploit and for us to feel good about.
“We need to somehow have “superpowers” or “be inspiring” but what if we simply, are trying so hard to exist and sustain an art practice when all the doors are shut to us? ”
We need to somehow have “superpowers” or “be inspiring” but what if we simply, are trying so hard to exist and sustain an art practice when all the doors are shut to us?
Colombo explains; “[Sia’s] film isn’t for autistic people, but for performative neurotypicals who fetishise the autistic experience as feel-good inspiration porn.”
And yes arguably there might be autistic people who look and act like the protagonist in her film, but this idea of autism is actually an incredibly ableist perception of autism. Autism is so often not the way we perceive it, unless we live in the skin of someone with autism.
And until we admit we know nothing about autism because we don’t trust autistic women to lead or shape projects, then we shall never know what an autistic woman is like in the music industry, in the film industry or even in the arts.
Photograph by Ava Sol
For some perspective, I run Magical Women, and even so many neurodivergent women/womxn artists continue to expect or treat me as if we’re neurotypical – but we’re not – I’m not – I’m neurodivergent and I struggle. I struggle without access and we need access to lead and we need access to run projects but not because we can’t do the project and not because we can’t lead a project but because neurotypicals make it so hard for us to lead because of the very ableist tendencies of what a leader should or must look like, how if you’re not a confident person or if you stutter you’re not able to lead … Who says? Who decided those things? Neurotypicals.
When we look at trees, we love the diversity of them, we experience their differences in age and style with awe. But not with humans. With humans we perceive them out of fear, out of disgust and often out of ignorance because we never gave them space to be.
Change the system
Education is forced to look at children in a way that sizes them up, and feedback is often given in such critical ways that it shuts out and excludes those of us who are so incredibly sensitive. And the arts are wrong when they tell us to grow thicker skin – our masks are heavy enough – instead we need a changing system, ND led ways of nourishing not persecuting. The average autistic and ADHD children will hear 20,000 more negative things said about them by their 12th birthday than non autistic/non ADHD children (Dodson, 2019). So enough of blaming trauma on why we experience barriers and instead, we’d like neurotypicals to own up to their part in why we might experience horrific social anxiety due to their role in the trauma, whether done intentionally or not.
But when Neurotypicals are told that autistic adults without a learning disability are 8x more likely to die by suicide than someone without autism, neurotypicals will often not believe autistic adults, fobbing them off or telling them that men are the highest group. Neurotypicals have an answer for everything.
“For years, society and the healthcare system have ignored the voices of devastated families who have lost autistic loved ones unnecessarily, and far too young. That ends now. We cannot accept a situation where many autistic people will never see their 40th birthday” (Autistica, 2018).
And
“Suicide is a leading cause of early death within the autistic community. Autistic people are substantially more likely to consider, attempt, and die by suicide than other groups. NICE guidance on suicide prevention recognised autistic people as being among those at highest risk (2018). Autistic women are markedly more likely to die by suicide than non-autistic women.” (Autistica, 2020).
What neurodivergent populations and particularly autistic women want Sia to know – and people in general who don’t quite understand autism or other neurodivergent conditions – is “enough with the inspiration porn, but also enough with the exploitation”. Autism isn’t how you perceive it and if you perceive someone as not requiring access, or as problematic, then you need to shape your perception and spend time with why you believe one autistic person should be given the platform or support over that other person. What is about one person that makes you want to be a martyr for them, but you won’t offer the same opportunity to someone you might deem more “high functioning” or not needing the support you’d rather give someone else.
There are thousands of autistic women artists, autistic women musicians, autistic women actresses out there and they are screaming to be heard and continue to go on being unheard because you won’t make the adjustments to hear us.
And the irony about all of this, is that we are constantly making the adjustments to live in a system and a structure that demonises us on a daily basis.
Isn’t it time, you made space for us?
This was written originally for Drake Music when I was Artist in Residence from March 2020 - 6th January 2021. Read it here.