events
“No you’re not” – a portrait of autistic women
When a woman discloses that she’s autistic, the reaction is often, “But you don’t look autistic,” or even a straight denial, “No you’re not.” This insightful and moving series of portraits and interviews by photographer Rosie Barnes allows the voices and experiences of autistic women to be heard.
HANNAH
For too many years there has been a persistent untruth that autism is rare in girls and women. The use of classic autistic male characteristics for diagnostic parameters has meant that generations of women have been overlooked and often arrive at a diagnosis decades after their male counterparts. These women may have careers, relationships and families of their own. I wanted people to understand the very real differences that they have been carrying with them throughout their lives, masking their true selves to enable them to pass for ‘normal’ in a neurotypical society that has not acknowledged or supported them – at the cost of their mental health.
This group of women, the majority here diagnosed within the past four years, are the least likely to be believed to be autistic. The irony is that their struggles are often greater because of their achievements, often in education or work, meaning they are even less likely to be believed and more likely to be misunderstood. I wanted to enable these women to tell their stories and to challenge our understanding and acceptance of different neurotypes in a society where there are so few opportunities to be seen or heard.
LAUREN
“You don’t look autistic.” The number of times I’ve heard that – I mean, what am I supposed to look like?! Nobody questions a man when they say they’re autistic; the reaction would be more, “Let’s see how we can help you.” But with a woman, it’s “Well, you’ve managed so far…”
I’ve always loved cars. Cars, space, history and reading. I’ve no interest in hair, make-up, shopping or going out for lunch. I seem to have honed in on a masculine environment. I’d rather roll my sleeves up and work on my cars. But it doesn’t seem to fit the stereotypical way a 45-year-old mother of three should be living. I really struggle to understand people and figure out what they mean, but it’s much easier with men. Guys tend to say it how it is and I can say it back how it is. They are quite blunt and I prefer that.
When the pressure gets too much, I do have meltdowns: autistic overwhelm. I’ll curl up and cry. I have panic attacks where I clam up and freeze, or my jaw goes tight and I can’t speak. To be able to function again, I regulate myself by listening to a piece of music on repeat 35 times, over and over, while stroking my hair – stimming. It happens quite a lot, but of course nobody sees that.
Learning more about myself means I can function better and I’m happier. There’s a lot of joy in my life. I’ve stopped masking, which has given me more energy, more confidence and I’ve made better relationships. For years I thought I just needed therapy to fix the problems I had, but when I was told I was autistic, I realised it isn’t something that can be fixed. I am just me. I tell people who are close to me that I have social difficulties, this is just who I am, and if they don’t like it, then that’s on them. Nobody asks a visually impaired person to make more of an effort to see.
BELINDA & HEIDI
I want any girl who sees my portrait to be able to relate and to know that she is not alone. You can be Black and autistic. You can stay true to yourself and take strength and power from that.
I basically raised myself. Masking was a coping mechanism but also a survival technique, because I was the outcast everywhere. I was highly intelligent, on the Gifted and Talented register. I went to a mostly white school where I was never going to fit in. I was bullied and excluded, because I’m Black, because of my socio-economic situation, because I’m a woman.
I used to be adamant that masking was solely negative, but I do feel it’s sometimes beneficial, as it enables me to suppress my challenges and excel in neurotypical society. That is how I have survived. When I’m in work, I’m the most valuable player in the team, no matter what level or what industry. It doesn’t matter when you’ve subconsciously mastered masking.
I do realise it’s unsustainable, though. I have really bad social anxiety: it could take me five hours to leave my house, which could include me being sick and having multiple panic attacks.
But the people I’ve been most rejected and dismissed by are Black people. My own family, the people who I’ve grown up with. This is because of the stigma that my culture associates with disability, with mental health. I am very easily triggered and get very defensive of my safety because I’ve had an autistic meltdown misconstrued as a mental health crisis. I’ve been sectioned because of it, whilst crying, “I’m autistic, I have ADHD, I am Lauren, I’m present. This is the date. There’s nothing wrong with me. I support others, I speak at conferences, I consult the NHS.”
They see a Black woman who they’ve been told is angry, aggressive and all these other racial stereotypes. So you’re even more invisible as a Black autistic woman, invisible to the people who hold the keys to help, because they’re busy taking notes on your background and not actually listening to you. It’s something that just needs to stop, it really does.
People see what’s on the surface and think that I’m outgoing, confident, eloquent, outspoken. It makes me feel trapped. I’ve had a lifetime of misdiagnosis, knowing I needed help, but not knowing what help to ask for, so never receiving any – something that’s not changed, even with a diagnosis.
MARGARET
I wouldn’t actually want to be any different. My ability to notice things and my obsessive interests have brought me a lot of joy over the years, and I wouldn’t have sacrificed these, even with the social difficulties I’ve had.
I remember a meeting with a Junior Minister, when my boss said to me afterwards, “You really shouldn’t have told him you would take his ideas into consideration when you make the decision. He’s the one who will make the decision.” I had no idea I was coming across like this. I’m terribly bad with hierarchies. I can talk to people one human to another, but I can’t talk up or down. I don’t “know my place”.
I’ve had two novels published, but while I love the research and writing, I find the publishing and marketing excruciating. Launch parties and putting myself “out there” for interviews with the media are just not my thing. But it’s what publishers expect you to do. It’s like telling someone you’re an experienced deep-sea diver and then hearing them say, “That’s great, now go and climb Everest.”
Seven decades of not knowing has taken its toll. I’m pretty good at masking, but it’s hard to know where the real me is. Autistic people are often perceived as weird. Don’t you think we’d try to hide our autism if we can, if the alternative is to have people ridicule or reject us or tell us we’re broken? That’s what we use our intelligence for – to act the part of ‘normal’.
It’s vital that people understand that women can be autistic too, otherwise many women are condemned to live a kind of half-life, with talents never fully expressed or recognised. I feel that speaking out may be the best way I can express the true me in what remains of my life.