NAME Rosie Barnes

JOB Documentary Photographer

PROJECT No You’re Not

Portraits of autistic women

Rosie Barnes is a documentary photographer who has a particular interest in what she terms disability/difference. She has produced work that looks at the experience of autism (Understanding Stanley), obesity (Teenage Obesity) and more recently the hidden lives of autistic women.

The latter project, No You’re Not, arose out of her work running a local branch of the National Autistic Society, where she helped run a support group for parents of autistic children. During a session about 8 years ago, one of the mothers made a revelation that took Rosie and the other parents (who were mostly women) by surprise. “She said, I’m starting to think that I might be autistic. We were taken aback because it was a shocking thing for a woman to say.”

“I’m a very quiet sort of watcher. I was always described as a daydreamer but actually I was trying to figure out what humans are about and why we do the things we do.”

Rosie explains that it’s still uncommon for women to be diagnosed as autistic, with the medical profession more likely to see it as a typically male thing.

Over the next few weeks other mothers in the group announced that they too could be autistic. It made Rosie think about the impact this lack of understanding and diagnosis might have on women’s lives, and about the numbers of women who may be living with a secret or masking their true selves to get by: despite a significant change in the law and societies attitudes to autism, it can still be problematic for people to speak out about it in the workplace.

At the time Rosie was looking around for a new project to focus on. “I decided to search out these women who to all intents and purposes appear to be functioning very well, they may have families or a career, there may not be anything about them that stands out.”

The title of the project points to the problem that wider society has with accepting the idea that women can be autistic, with well meaning people dismissing the possibility by arguing that a woman has achieved academically, or can make eye contact or hold down a job. “I called it No You’re Not because so far I’ve interviewed and photographed about 25 women, and all of them, without exception when they’ve told people that they might be autistic, have been told by family, friends or colleagues, no you’re not.”

Lydia, 21, journalist

People regularly tell me I am not normal – so I do feel different. I am self employed due to job interviews being so challenging and adaptations, required by law, rarely given to me. But I am persistent and not seeing social conventions means I can ask questions that are usually taboo. But no one should have to deal with what I have dealt with over the years.

No one should have to deal with ableism or discrimination. The sum of humanity in all of its finery, its colours, is far more than just the sum of a theory, a diagnosis, a hypothesis. Our intelligence, our ability to articulate ourselves, or how we present, does not show our challenges. We have made ourselves to be strong and stoic in a world built for non-autistic people. Maybe it’s not us who are the problem; maybe it’s others who should have a modicum of empathy.

The challenge of finding subjects for portrait photographs

Initially Rosie found it quite challenging to recruit people for her project, with potential subjects worried that they may face prejudice, or repercussions in the workplace, or were simply reluctant to disclose their diagnosis in public. But as the project has gone on and it has received publicity, with a commission from the Wellcome Collection and recent selection for the Taylor Wessing Prize, Rosie has started to hear from women who want to be included.

Something integral to the project is the inclusion of each woman’s words. The interviews, in extended captions are always included, alongside the portraits, giving equal importance to both. Rosie also makes an effort to include the subjects in the selection and editing process. “I always send them 2 or 3 of my favourite images to view, though make them aware that the final choice is a balancing act, based on how they sit within the set/the project. This is a collaboration with a lot of mutual respect”.

The project is really starting to achieve the aims Rosie set out with. “My benchmark is always to be able to produce a piece of work that reaches and is meaningful to ‘the people at the bus stop’ (as I call them). To be able to take a complicated issue and make it mean something in a simple, human way, to someone who may not have even considered the subject, nor thought it could be relevant to their own lives. If I can do that, I know I have succeeded. Autism is something that has always been misunderstood, though that is beginning to change. I’m hopeful that ‘No You’re Not’ can add more insight and more understanding to the subject”.

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Sumita, 31. Performer, writer and collaborator on CBeebies’ series ‘Pablo’.

I’m a creative-imaginative autistic person. I’ve spent a lot of time on my own, but I do know people and I do have friends. Non-human connections, however, are really important to me too. For me it’s about energies. When I’m with nature or a non-human, that communication can feel much more natural.

I feel that things reach out to me in those moments and that’s really precious. It’s an energy – an essence and can be really meaningful, really powerful. There’s no way of not respecting that it is also a friendship: it is a two-way exchange. I feel extremely lucky to have this sense of connection with things.

Louise, 49. Former consultant and policy analyst, mum, peer supporter.

All through school, I was pretty much shut out, ostracised. It’s like there’s an invisible forcefield around you. People bounce off it and don’t want to be near you. So I couldn’t even really see how the other kids did social stuff, let alone practise it. It’s like the stories of children being discovered, having been raised by wolves in a forest and ‘Oh, they don’t know how to use a knife and fork!’. Well what a surprise.

You try so hard, watching, analysing, but you never get it right. You can’t. It’s exhausting. You think, it must be that difficult for everyone, so if they can do it and I can’t, I must be a lazy, bad person.

Margaret, 73. PhD in astrophysics, retired civil servant, author, wife, mother, grandmother.

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’.

Lauren, 29. Event operations/project management, autism advocate, founder of Mask Off.

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. 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 really just needs to stop.

Hazel, 40, counselling educator and writer

A lot of people misunderstand empathy and think it’s just one thing, presenting one way. ‘Sensing empathy’ is the ability to feel that someone else is upset. Autistic people tend to have that too much, picking up on everyone’s feelings in a room. So it can feel actually painful because it is so intense.

But because it’s so intense, you get to a point of needing to shutdown because it’s so overwhelming and then you can’t read anyone or make any eye content and your thinking becomes very black and white. Then people accuse you of not having any empathy. It is actually quite the opposite.

Tiffany, 28, coder, app creator, hand model.

During lockdown, those first four months, I had the happiest time of my life. Everyone started to live the life that I’ve been living. I don’t mean that in a horrible way, I just felt that other people might finally understand. But also that I wasn’t the only one in a situation.

I often have the thought that I should be doing what everyone else is doing, but because everyone was just at home, like I was, it felt like finally, this is fine, this is acceptable for me to be living this lifestyle now, because everyone else is too. I find it so hard to just get on with what I need to do because I’m always wondering if what I’m doing is right. I’ve always felt like this, a constant feeling of comparison.

Alison, 72. Retired teacher and trade union rep, wife, mother.

I am convinced the stress of living a lifetime with undiagnosed autism is one of the things that has caused my bodily health to break down. It’s like I’ve got an autistic body as well as an autistic mind. I think of my pain as a physical manifestation of my autism. Everything hurts, inside and out, top to toe, 24/7.

My official diagnosis is chronic global pain syndrome, but I also have fibromyalgia, which is very common in autistic women – a nerve disorder triggered by brain chemistry. It’s an area that urgently needs researching – there are a lot of elderly autists who are suffering terribly. Women particularly.

Belinda 50, Heidi 41. Musicians, singer-songwriters, parents.

We met on the music scene. We were both in chaotic stages of our lives and were really struggling. If you’re constantly unsure, it’s exhausting and angst-inducing. We are very lucky to have found each other. We’re each other’s guide and we’ve given each other stability.

There’s a crazy idea that you can’t be autistic if you’re creative, but it’s sort of the opposite. There are so many autistic creatives, especially in music. Music is pattern-based and quite mathematical and we’re both quite logical. It’s also a way of channelling the things that you can’t verbalise.

Jayne, 37. Press officer, partner, mum, friend.

I don’t think that the experience of being autistic itself is that much different for men or women, it’s just that society has taught women to fake it better. There are rules for how to be in society and they’re much more clearly defined if you’re a woman. It’s about conformity and if you don’t conform you’re being rude. But this leaves you very vulnerable.

I don’t know many women, especially autistic women, who haven’t been sexually assaulted. Bad people can always spot someone who’s different, they know who’s vulnerable. It sounds very simplistic, but people lie. And if you’re autistic, you can be very literal and not always spot that, and so it’s not always clear what’s going on.

Pauline, 61, retired civil engineer

I got so sick of the annual performance reviews which said – ‘You’ve met all your targets, to budget, on time and as planned. You’ve done everything perfectly well, but I’m going to have to mark you down as sub-standard because you’re not liked’.

It was because I’d tell the truth in every situation. Neurotypicals would say, ‘well if you know they don’t like it then why can’t you just change?’. And I’d say, ‘well I’d have to just not be me for the rest of my life’.

Wendy, 51, model

In the 80s, autism wasn’t something that many people spoke of and if they did it was always assumed to be just a boy thing. But we present in a different way. Instinctively we mask to fit in. The more able, the more you mask because there’s an innate sense that nobody will believe you.

I was hopelessly bullied from aged 3 or 4 and it continued until I left school. My biggest issue is understanding non-verbal communication in a social situation. There’s just too much going on. Hearing what someone is saying and understanding them, is not the same thing. Eye contact is painful for me.

It’s difficult to explain why but it just is. But I know it’s important to others, so I do force myself to do it, to make other people feel more comfortable.

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With her portraits of autistic women, Rosie Barnes gives voice to an under represented community.