Joanne Limburg: ‘Autistic women don’t simper. We have no interest in making a man feel big’

The poet and novelist was well into adulthood when she finally got the diagnosis that made sense of the past three decades. She speaks to Helen Brown about her new book, ‘Letters to my Weird Sisters: On Autism and Feminism’, an ode to women like her throughout history

Joanne Limburg: ‘I’ve been told that somebody with a profile like mine ought to have dropped out of university. But nobody told me to fail, so I didn’t' (Joanne Limburg)

Resting Bitch Face? Oh God, yeah!” Joanne Limburg groans, then laughs. “The first time I remember being aware of it was when I was seven years old. ‘Smile!’ said my teacher. ‘You won’t crack your jaw!’ That was the year I began having nightmares about school.”

It took nearly three decades for the critically acclaimed poet and novelist to get an autism diagnosis. It explained why other people kept asking her to rearrange her face for them – telling her she looked “furious” while concentrating, or “freaked out” when they started a conversation she wasn’t expecting. In her brilliant new book Letters to my Weird Sisters: On Autism and Feminism, she is frank about the painful price paid by “a woman who moves through the world as if the way she appears to other people is not her primary concern”.

But Limburg has found “reassurance and real joy” in reaching back through history to find connections with women who also struggled to conform. She felt in a sorority of oddity with women from Katharina Kepler – who was the mother of 17th-century astronomer Johannes and was accused of witchcraft – to 20th-century novelist Virginia Woolf. Adelheid Bloch, too, who was left with learning difficulties following a childhood illness and became one of the first people deemed “unworthy of life” by the Nazis and murdered in a prototype gas chamber in June 1940.

“I wanted to build on the work Steve Silberman had done with his book Neurotribes (2015),” she tells me, via video link from her home in Cambridge. “He wrote about people like Henry Cavendish and Nikolai Tesla. He didn’t retrospectively diagnose anyone as autistic because you can’t do that.” But he did trace an important and humanising line of autistic-like thought back through the spine of human evolution.

“Silberman didn’t write much about women and he acknowledges that,” says Limburg. “But my assumption was: we’ve always been here, even if we haven’t been included in the traditional autism framework. So given that, who were the women like me?”

Inspired by the way Beyoncé’s Lemonade album was addressed to black women, with others allowed to “listen in”, Limburg decided to write letters directly to her “weird” sisters and “if neurotypical people want to read them, they can”.

In the introduction to Weird Sisters she writes: “I read about witches; I read about writers; I read about nuns, beguines and anchoresses; I read about women who had been shut up in institutions; I read about outcast girls and pathologised mothers. Sometimes I would read myself down a blind alley: anchoresses, for example, turned out to be not weird at all, but more akin to the sort of modern woman who has raised her family and decided to retrain as a counsellor.”

Limburg is brilliant on the way Katharina Kepler’s “directness and lack of womanly softness” (in combination with her ability to thrive as a single parent) led to her being tried for witchcraft. And how the judge interpreted her lack of tears and direct eye contact as signs of guilt. Kepler’s famous son came to her defence, explaining that she preferred to use words and not gestures to express herself. Limburg relates: “My feelings often fail to show in my face in a way that most people recognise, or at least, they fail to show quickly enough.”

Initially, Limburg baulked at including a subject as famous as Woolf. Although she suspects the beautiful, privileged, anti-semitic Woolf would have looked down on her less advantaged Jewish correspondent, Limburg ultimately found her an irresistible subject. She reminds readers that the author of Mrs Dalloway (1925) and To the Lighthouse (1927) was a woman whose “uncanny” mannerisms and offbeat dress sense also drew comment. Her husband Leonard wrote that “to the crowd in the street there was something in her appearance that struck them as laughable… people would stare, or stop and stare at Virginia. And not only in foreign towns; they would stop and stare and nudge one another – ‘look at her’ – even in England, in Piccadilly or Lewes.”

Writer Virginia Woolf, circa 1927 (Getty Images)

Now aged 51, Limburg says that people no longer stop to clock her own “distinctive walk”. But she remembers the days when boys would yell “Dog!” if she had the distracted temerity to meet their gaze. She recalls the way the cool girls sniggered at her clothes.

Born in North London in 1970, she remembers “going into my mum’s room in the early seventies and recoiling at the burning sensation of hair lacquer in my throat”. Her early impression was that “being a woman meant nasty smells, uncomfortable tights and pointy shoes you can’t walk in. It was all horrible guck that I didn’t want near me.”

As a teenager in the 1980s, she couldn’t find a corner to claim for herself in the shiny pop culture. Later, she caught an unflattering reflection of herself in The Presidents of the USA’s 1995 single “Lump”:  “Lump sat alone in a boggy marsh/ Totally motionless except for her heart/ Mud flowed up into lump’s pyjamas/ She totally confused all the passing piranhas…”

Today she has learnt that the version of femininity she rejected is equally likely to be “studied and perfectly reproduced by some autistic girls”. This “masking” is often believed to be the reason that so many autistic girls fail to get the diagnosis that would help them understand themselves and get the support they need. Limburg doesn’t buy the theory that women are innately better at masking than boys. It’s just that, given the higher social expectations placed on girls, “heaven help us if we don’t make the effort!”.

Limburg got through school without support. Her academic ability helped compensate for her social struggles, and she soothed anxiety by picking obsessively at her skin, which deepened her sense of shame over her appearance. Lapses in focus led to spilled milk and unfiltered blurting. Early on, she realised she experienced language on a more intense “tactile, sensory level” than most of her classmates and decided she wanted to be a poet. She went to Cambridge University, where she read philosophy, but now she shakes her cloud of chestnut curls at the memory.

“I shouldn’t have gone off to university with no support at 18,” she says. “No way. I wish I’d had realistic expectations, understood why certain things were difficult for me and been allowed to develop at my own pace.” She thinks that, if she’d had a diagnosis, somebody might have given her a toolkit of social stories. “I don’t pick up on some things unless they’re made explicit. I wish somebody had taken me aside and said: ‘In this sort of situation, people expect this or that’.” But on the other hand, she suspects a diagnosis could have permitted others to underestimate her.

“I’ve been told that somebody with a profile like mine ought to have dropped out of university,” she says. “But nobody told me to fail, so I didn’t. Nobody told me I wasn’t supposed to get married. Nobody told me I wasn’t supposed to be somebody’s mother. So I’m afraid I went ahead and did all those things, as if I were – shock horror – an ACTUAL PERSON.”

While surviving the decade after graduation working at an assortment of short-lived jobs (including a comically inappropriate stint as a careers officer), Limburg met her future husband – a computer scientist called Chris – in her late twenties. “Dating was horrible,” she tells me. “Autistic women don’t simper. We have no interest in making a man feel big. Chris has been my only proper ‘relationship’, as opposed to ‘encounter’.”

Limburg was 30 when she published her debut poetry collection, Femenismo, shortlisted for the Forward Prize Best First Collection in 2000. A second collection, Paraphernalia, followed in 2007. Although the cliched, Rain Man-fuelled perception of autism suggests that autistic people are only capable of excelling in maths and science, Limburg says: “Making art is not a remotely neurotypical thing to do! I’m not going to name names. But if you think about how certain very well-known music producers have been described as obsessive and eccentric and so on, with an ability to hear things other people can’t hear… well. What is that?”

We exchange opinions on the possibility that various authors, pop stars and visual artists might be autistic. My other autistic female friends (most of whom have humanities degrees) play this speculation game on a regular basis. It’s a guilty secret. They are all, constantly, scanning the radar for pings from other weird sisters. But Limburg and I agree not to include the names of the artists we discussed in this article. “I wish this were the sort of thing one could say out loud,” shrugs Limburg. “But it isn’t. Because there is a stigma and people are seen as their own family’s property.”

Limburg offered a sketch of her own family in her 2011 memoir, The Woman Who Thought Too Much, in which she diagnosed herself with Obsessive Compulsive Disorder (OCD) while pregnant. She wrote with raw hurt and fear about her terrifying, bloody experience of miscarriage and later anxiety over early motherhood.

Today she says she was “aware that OCD didn’t explain everything. There were questions remaining.” While she was writing her memoir, her older brother, a brilliant chemist, got a diagnosis of adult ADD (attention deficit disorder). “The conversation with him,” she says, “was that he was sure the whole family had it.” Her brother died by suicide in 2008 and Limburg “was left wondering what happened. Between that [time] and my mother’s death, three years later, I was just trying to hold her and hold myself together. After she died, I had time to think about my own diagnosis. I looked at ADHD but that didn’t seem quite right. I’d always been interested in autism and felt a sense of sisterhood with it. But I never felt I met the criteria.”

I typed ‘Aspergers’ and ‘women’ into Google. I’d never put the two words together before. And there I was, very recognisably, at the intersection

Joanne Limburg

Then an old friend of Limburg’s from Cambridge shifted her understanding of those criteria. Her friend said she had Asperger Syndrome, an autism spectrum diagnosis then (less now) applied to people who might experience some challenges but who displayed high intelligence and unimpaired language skills. “She wasn’t the stereotype at all!” says Limburg, still sounding surprised. “She was very sociable, empathetic… a very good actor. Then I typed ‘Aspergers’ and ‘women’ into Google. I’d never put the two words together before. And there I was, very recognisably, at the intersection.”

Limburg’s GP referred her to a specialist clinic where she was asked to fill in questionnaires which, she felt, suggested that medics were still clinging to outdated (and classically male) ideas of autism. “One question asked if I would prefer to go to the library or the theatre. I actually would prefer the library but some autistic people would choose the theatre. There are a lot of autistic actors [including Sir Anthony Hopkins], which makes sense because what are we doing to fit in, if not constantly acting? Another question asked if I had trouble understanding fiction. No I don’t, thank you very much!”

Limburg has so little trouble “understanding fiction” that she published a novel about Queen Anne, A Want of Kindness, in 2015. “What brought me to Anne’s story,” she says, “was her horrific experience of maternal loss – all those miscarriages and stillbirths and neo-natal deaths. Because of my own experience of miscarriage, I wanted a way to explore the subject without its feeling too close and too raw.” But there were other points of identification. ”Anne was socially awkward (partially because of terrible eyesight) and apt to go almost mute in some situations; she had health problems; she was an unremarkable-looking woman with a nice voice.”

After her diagnosis, Limburg published another poetry collection called The Autistic Alice (2017), using Lewis Carroll’s Alice in Wonderland and Through the Looking-Glass to explore her own experience of being “a logical little person going through a world with apparently arbitrary rules. Like Alice, I had a habit of running into a rule I didn’t know was there. And, in John Tenniel’s original illustrations, Alice is often staring the way I do.”

The collection saw Limburg expressing her sense of physical ungainliness. In a poem called “Big Alice”, she writes: “Without meaning to or even knowing,/ Alice has grown huge again./ It starts with her name in an angry voice:/ Look what you’ve done!/ Since when were her hands so far away?/ One’s stuck on her face and covered in ink,/ the other’s on the desk, by the up-ended carton/ with milk seeping out.” When Alice is sent out to the office, “eyes watch her thudding damply to the door,/ the dumbest Alice-lump they ever saw.”

The collection also sees Limburg celebrating the sensory highs of autism. She recalls looking down at the ground and thrilling at the physical marvel of ants: “shiny black and perfectly themselves”. Absorbing every detail of the insects, she experiences an “ant-shaped joy”.

“We don’t talk about autistic joy enough,” she tells me today. She suspects autistic people are capable of experiencing “wonder, stimulation” in response to everyday experiences on a level that “neurotypical” people have learned to filter out. “I never tire of looking up at clouds and seeing the crepuscular rays,” she says. “And I just love colour. My response to it is almost tactile. There’s a certain green that I can’t look at without tasting Granny Smith apples. I experience blue as a hug. I feel I could fall onto blue. And I love the rainbow – I seek out the spectrum at make-up counters, in art shops, in the towel displays at John Lewis. They all make me ridiculously happy.”

Limburg’s Alice poems will also remind some readers of Greta Thunberg, a rational child who has been threatened by many adults for speaking out about climate change. In Letters to my Weird Sisters, Limburg argues that the vilification of Thunberg hangs largely on “her lack of normative femininity – her directness, her uncompromising manner of communicating the truth to powerful men without softening the message, her refusal to simper, her unsmiling face”. A hundred years ago, Virginia Woolf wrote that men have always used women as mirrors to reflect them back at twice the size. “In Greta’s eyes,” says Limburg, “powerful, narcissistic men see themselves as they are, and they do not like it, and they blame her for showing them.”

In her sixth decade, Limburg reflects that “there is cultural space for outspoken older women. We still get vilified. But nobody knows what to do with you when you’re 22 and you think you have a speaking part. Being a girl is about looking cool or looking accommodating. It’s not about speech.” Because she experiences other people’s distress quite acutely, Limburg has developed a stereotypically female tendency to “smooth the room because I can’t cope with the jaggedness”.

She says she learnt to “play the funny card very early on in life”, because humour is a way of letting uncomfortable truths slip into a room. When Limburg does this she thinks: “OK, you might not understand me and we might not have a conversation in which we feel connected but at least I can entertain you. Then you’ll get some worth out to me.”

She does that less often now. “I’ve learnt to listen more,” she says. “I can get people to talk about themselves more now. Partly because I am genuinely interested. But partly because I am often also too tired to assemble the words in my head and separate them from the meanings and the noises and the muscle movements and the…. bleugh. Then put it through my filter to check they’re appropriate. Conversations can be exhausting!”

Through writing Weird Sisters, and connecting with women who were unable to mask their struggles so successfully, Limburg has also realised that she might be causing more harm to herself and others than she knew. “I had started to think of my ‘Nice Lady Persona’ as my greatest achievement whereas maybe it needs to be retired.“ She smiles. I hope for herself and not for my benefit. ”Maybe I’d do more good in the world by being more like Greta.”

Letters to my Weird Sisters: On Autism and Feminism is out now, published by Atlantic Books