Rosie Barnes

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’.

ALISON, 72, retired teacher. LEX, 38, specialist autism speech and language therapist. Alison: If I’d known about female presentation, I would’ve known that Lex was autistic, I’d have known she was struggling. I would’ve been a better mother. Lex: But how would you have known? There was me wanting to pretend and wanting to be with people all the time. I always felt different to others, but I wouldn’t have identified that I didn’t understand people or that I was struggling to communicate. Alison: I envy you your neurodiverse community. For older adults like me, it basically doesn’t exist. Lex: I seek out LGBTQ people, and the ones that I find I make friends with tend to all be neurodivergent. There’s a huge overlap. I use the word ‘neuroqueer’ for myself because I can’t separate the two.

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.

AMANDA, 44, teacher (SENCO), MSc Psychology student. SOPHIE, 20, student nurse, musician. Sophie: People often say, ‘Well, I think we’re all a bit autistic’, and I just want to shout “No!”. People question our diagnosis. They say: ‘No you’re not – you can’t be. You make eye contact, you’re too friendly, you’re too chatty…’ Amanda: ‘you’re too clever, you’ve got a job, you can hold down a job. You’re married, you’re a mother’. Why would someone question our diagnosis, like they think they know more about us than we do? It’s so arrogant. They can’t see our struggles. They don’t know that while I can easily teach a class of 30 children, I can’t make friends and find it so hard to know how to speak to adults.

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.

ELEANOR, 44. Head of risk governance at MetroBank. Autistic characteristics are simply forgiven in men. If a man is very literal and he pursues things the nth degree, then it’s seen as doggedness or the pursuit of excellence, whereas with a woman, it’s nit-picking, it’s nagging, it’s time wasting, it’s hair splitting. A guy, a financial lawyer let’s say, well people would accommodate that need for precision, they’d even praise him for it, for spotting inconsistencies and ambiguities. But if I do it, I’m just a pain in the arse. And the reason is that women are supposed to be accommodating and there’s a much higher expectation of us being better, more instinctive communicators. Bollocks to that. I just want people to use unambiguous, clear terminology. Being an autistic woman is such a double whammy.

ELINOR, 37. Artist, collaborative arts practitioner, performer, mother, partner, founder of Magical Women. I remember being four years old in the playground, standing with my arms behind my back against the wall whilst all the kids around me were just kind of running; they always had purpose and focus. I was just praying for rain so we could go inside where there was structure. I could draw or read a book and be in the corner where it was just easier. But the teachers would come up behind me and push me forward saying ‘Go play Elinor, go play’. I’d just literally be frozen. It felt like a dream of being in a snow globe where everything is falling. I also had a very vivid sense that I had come from somewhere else and I wanted to go back there. I would look up at the sky and think ‘I’ve had enough of this now, can I go back please?’.

EMA, 36. Care provider manager. I’d always struggled but didn’t understand why. I felt quite weird and I’d always get into trouble. My Mum would tell me that I was difficult and I’d get told off for things but I didn’t understand why I’d done. When I asked her she thought I was challenging her, but I was actually just trying to understand what I’d done so I didn’t do it again or I could try to change it. It sets you up for feeling constantly confused and that you’re always going to be wrong. For years I thought I was very stupid because I couldn’t understand things in the same way as other people did. It happens at work too and you learn from a young age, as a woman, that there are social pressures on you that are different to men. It’s very subtle but it’s there. As an autistic woman I think there needs to be the same kind of movement as something like gay pride. We need to be outspoken and say, look, we are not stupid, we are experiencing life in a different way and when I challenge you, I’m just trying to understand the context behind what you want me to do, because as soon as I understand that, I am fine.

EMILY, 51. Policy advisor in central government, mother, partner. Society fundamentally traumatises us from day one, without an understanding that yes, I am different. I saw a psychiatrist who knew she was meeting somebody who was autistic, but she’d never heard of autistic fatigue or burnout. She didn’t know that the experience of trauma, both what triggers it and the way you then express it, is different for people who are autistic. I’ve spent my whole life masking just to fit in and not knowing why I didn’t. It’s exhausting having to self-advocate in a world that still doesn’t quite believe us and still doesn’t quite understand. We need to go beyond this.

HANNAH, 45. MA visual arts student, professional organiser, artist, mother. Learning more about myself means I can function better and I’m happier. I’ve stopped masking which has given me more energy, more confidence. 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. This is just who I am and if people don’t like it, then that’s on them. Nobody asks a visually impaired person to make more of an effort to see.

CAT, 37. Musician, choir director, parent. There’s not a great variety of narratives available for autistic women. I have a degree in psychology, I’ve worked in special education for a number of years, I’ve written essays on autism, I’ve been endlessly interested in that kind of thing – ‘people watching’ is a kind of special interest of mine. And yet I didn’t recognise autism in my daughter and then I didn’t recognise it in myself. And if I’ve missed it, with all my background and resources then something needs to change in the narrative about autism to help other women recognise themselves. We need a diversity of voices, so if women don’t quite see themselves in one piece of writing, then they might see themselves in another. It is so important. There are so many women out there simply not coping with life, who just themselves as broken.

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.

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.

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.

LINDA, actor. I used to mask and still do at times but I’m slowly letting myself out. I’m autistic, I can’t filter out sounds, I hear them all at once. It’s too much and I have to stim to regulate myself. Most autistic people have some kind of stim they need to do, to calm and self regulate but don’t let others see. The nature of my personality is that I’m quite punky and think, I don’t really care, I’ll do what I want, if I need to stim then I will. It would be great if there were more people out there openly flapping and stimming. It needs to normalised and recognised. But maybe it never will be, like racism.

LIV, 17, undergraduate in computer science and AI. I did 12 GCSEs, all As and A*s, even though I wasn’t attending school because I had such a high level of anxiety and an eating disorder. Teachers tend to see one thing and don’t care to think about the trouble you might have, coming to grips with things like layout of work, sensory aspects, just the total overwhelming state of the classroom. They just could not see beyond the thought that I must be fine because I did so well in all my classwork. I really just want others to understand that the label you have doesn’t limit anything you’re capable of. And that very bright women can be autistic too.

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.

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.

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’.

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.

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.

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.

No You’re Not - A Portrait of Autistic Women

I felt this group of women are the least likely to be believed to be autistic. A persistent untruth that autism is rare in women, has meant many women arrive at a diagnosis many years after their male counterparts and their ability to ‘mask’ to fit in throughout their lives, comes at the cost of their mental health. The irony is that their struggles are often greater because of their achievements, often in education and work, meaning they are even less likely to be believed and more likely to be misunderstood.

Wellcome Collection article:
https://wellcomecollection.org/articles/Yd8L-hAAAIAWFxqa

Talk at National Galleries of Scotland, Edinburgh 2023:
https://www.youtube.com/watch?app=desktop&v=rmyz5y_5OBM

ROSIE BARNES

ROSIE BARNES