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Autism advocacy: 'I love being autistic. It's fun' 


Alanna Whitney is an autistic woman who feels empowered by her diagnosis. She sees herself as a neurodiversity activist, working to change the public perception of those with autism.
Ben Nelms/The Washington Post

Alanna Whitney was a weird kid. She had a strange knack for pronouncing long words. Anchovies on pizza could send her cowering under a table. Her ability to geek out on subjects like Greek mythology and world religions could be unsettling. She drank liquids obsessively, and in her teens her extreme water intake landed her in the hospital.

Years later, she found a word that explained it all: Autistic. Instead of grieving, she felt a rush of relief. "It was the answer to every question I'd ever had," she recalled. "It was kind of like a go-ahead to shed all of those things I could or couldn't do and embrace myself for who I am."

So it came to be that Whitney, 24, was arranging strawberries and store-bought cookies on platters at the Queensborough Community Centre for a celebration of Autistic Pride Day, her shoulder-length hair dyed mermaid green to match her purse and sandals. A bowl of orange earplugs sat nearby in case any of the guests found the ambient sounds overwhelming.

Whitney is part of a growing movement of autistic adults who are finding a sense of community, identity and purpose in a diagnosis that most people greet with dread. These "neurodiversity" activists contend that autism — and other brain afflictions such as dyslexia and attention deficit/hyperactivity disorder — ought to be treated not as a scourge to be eradicated, but rather as a difference to be understood and accepted.

The movement is not new. But it has gained a foothold in the cultural mainstream as the discredited debate over autism-causing vaccines has subsided and the voices of autistic adults have emerged, amplified by social media and the blogosphere.

"The new autistic person is being born in media, and it's someone who is very empowered, even if they need a keyboard to speak," said Steve Silberman, a journalist and author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, a book coming out next month.

Some longtime autism activists are wary of the neurodiversity movement, which they say promotes the idea that autistic people are not sick but simply quirky and geeky. Autism, which affects 1 in 68 American children and approximately 40,000 New Zealanders, ranges along a very broad spectrum, with the most severe forms leaving people unable to speak and in need of assistance with everyday functions.

Even milder forms leave people struggling with spoken language, repetitive behaviours such as flapping or rocking, and extreme responses to routine sensory experiences. Medical costs and therapies for autistic children typically cost families thousands of dollars a year, according to the Centres for Disease Control.

"I would love my kids to be functioning enough to say, 'I don't need to be changed,' " said Kim Stagliano, the mother of three autistic daughters and a prominent advocate of the widely discredited idea that childhood vaccines contribute to autism. Stagliano's daughters are so impaired that she must bathe them and "tend to their monthly feminine needs."

Neurodiversity is appealing, she said, because "it's a more palatable way to look at a diagnosis that scares the living life out of anyone who sees it. They want to think that sound in the night is a branch against the window, not a robber. But autism is that robber."

LIKE THE GAY RIGHTS MOVEMENT

Neurodiversity advocates object to the approach of many mainstream autism activists, including the large nonprofit Autism Speaks. Such groups, they say, are more focused on cures and making autistic people act "normal" than on improving their quality of life.

Neurodiversity advocates, by contrast, consider people with autism a minority group, albeit one with extra challenges that might need accommodating. They compare themselves to the gay rights movement and to the protesters trying to improve police treatment of African Americans.

"It's like an emerging civil rights movement," said John Elder Robison, an autistic writer whose memoir, Look Me in the Eye, was a bestseller. Among his best known accomplishments is developing special-effects guitars for the rock band Kiss. He now serves as the neurodiversity scholar in residence at the College of William and Mary.

"Neurodiversity is the recognition that autism, dyslexia, ADHD are just inborn neurological differences," he said. "Those differences carry with them gift and disability. Society needs the exceptional thinkers that the neurodiversity world produces."

Neurodiversity advocates say there are wonderful things about the autistic mind. Some people have an unusual ability to notice patterns, a skill valued in the technology industry. They can become deeply immersed in their interests. They often experience sensations more intensely. And they can be literal — a quality that interferes with their ability to understand tact and sarcasm, but can come off as charmingly humble and direct.

The movement is thriving online, with blogs and Twitter chats devoted to everything from autistic representations in film to autistic women to people who are both autistic and gay or transgender — referred to as "neuroqueer."

Many in the community say they get along particularly well with other autistic people, and not only because of their shared struggles and common traits. There is no pressure to maintain eye contact, which many autistic people avoid. They don't mind if their companions need to rock or flap — a soothing or expressive repetitive motion they refer to as "stimming."

Charlie Laughlin, left, and Alanna Whitney play with a "stimming" toy called a Tangle; "stimming" refers to soothing or expressive repetitive motions, just as rocking or flapping hands. Photo: Ben Nelms/The Washington Post.

"It's not that I don't have neurotypical friends too, but there's an immediacy and lack of necessity to, I guess, explain everything. Kind of like speaking the same language," said Heather Ure, a former teacher who blogs at TheNeuropunk.com.

Ure said she realised she might be autistic after her son was diagnosed at age 8, and a short time later received confirmation from her psychiatrist. Then her husband, a software engineer, realised he, too, was probably on the spectrum.

Because receiving a formal diagnosis as an adult can involve an expensive battery of tests not covered by health insurance, many autistic people who do not need to qualify for special services self-diagnose using information they find online and other places.

The movement has recently logged some policy victories. A Washington-based nonprofit called the Autistic Self Advocacy Network successfully pushed Congress last year to rename the reauthorisation bill for autism funding. Instead of the Combating Autism Act it was dubbed the Autism CARES Act. The group also led a successful campaign to increase the minimum wage for disabled workers at firms that receive federal contracts.

AUTISTIC PRIDE DAY - AWKWARD AT FIRST

The network's Vancouver chapter is particularly active. As head of that chapter, Alanna Whitney has focused on bringing the thriving online culture into the real world. That's why she organised a gathering for Autistic Pride Day, which is celebrated every year on June 18.

It was a modest affair, less a celebration than a quiet conversation over carrot sticks and cheese cubes. Predictably, perhaps, it was awkward at first.

One young woman introduced herself and then flipped open a thick volume titled Classical Humanities, which she read for the next three hours. A young man with a long red ponytail observed that Whitney's business cards were not quite the right shape.

"I have the feeling that I know some of you, but that you have changed your appearance since I saw you last," he told the group.

Eventually, the group settled into a natural rhythm. The conversation veered from Game of Thrones to supermarket waste to literal interpretations of the Bible. A compact man in a black baseball cap participated enthusiastically by scribbling his thoughts and questions on a small notebook that he thrust around the table. A tiny woman with black hair down her back chimed in quietly, her hand stroking a plush dog inside her purse. A couple of guests played with "stim toys" — little puzzle-like gadgets to chew or subtly occupy their hands.

Some expressed relief that they did not have to edit their geeky conversations, or make eye contact or hold back on stimming.

"Social interaction that is not costly, energy-wise," is how Eric King, 32, a data analyst and father to a 3-month-old, described it.

Leeta Gill, 34, a college student with a blunt fringe of bangs and dark-framed glasses, said she had joined a number of autistic groups even though she was generally satisfied with her work and family life. "Having a best friend," she said, "is difficult for me.

"From left, Charlie Laughlin, Leeta Gill and Sen Francis talk while attending an Autism Self Advocacy Network gathering in British Columbia on June 18/ Photo: Ben Nelms/The Washington Post.

Whitney glowed. The first time she came to a gathering like this, she said, she had the distinct feeling that these were her people.

BEING AUTISTIC IS 'FUN'

Growing up in rural Ontario, Whitney did not have a word for her unusual behaviour. Worried about spoiling Whitney by giving in to her nitpicky demands, her mother held back in a way that both women now feel bordered on neglect.

"If we had known she was autistic," her mother, Wendy Hunter, said, "a lot of things would have been different in our lives."

As a child, Whitney also experienced what she and others would call the positive aspects of autism. She ploughed through books on obscure subjects. She had an uncanny memory for idioms, which she would interject randomly into conversations: "Well, you're damned if you do and damned if you don't."

There were also the tantrums, which sometimes tore the family apart, she said. The same was true of her aversions to certain food textures, which some family members saw as picky. She had difficulty making friends and endured bullying, she said. Despite being a good student, she dropped out of school.

Alanna Whitney's artwork in her home in Langley, B.C.; she has immersed herself in art - not just painting, but photography, poetry, keyboarding, singing jazz and blues and even rapping. Photo: Ben Nelms/The Washington Post.

As an adult, Whitney struggled to hold down a job. But since her diagnosis three years ago, she has tried to follow her bliss. She has immersed herself in art — not just painting, but photography, poetry, keyboarding, singing jazz and blues and even rapping. The walls of the home she shares with her mother are filled with images of hands and brains clipped from magazines. She is planning to start a soap-making company to help make ends meet.

She has challenges, she said. For example, after dinner, she needs a sweet to "literally remove the residue and grease from my tongue." Without it, she sometimes dissolves, rocking vigorously or crouching under a table.

Still, she says, hers is a beautiful life.

"I love being autistic," she said. "It's fun."

Autism is seen as a male thing – but girls just implode emotionally’
They arrive self-harming, or unable to talk. Often they’ve been dismissed as hormonal. We visit the only state school dedicated to girls with autism

Within an hour of arriving at her new school, 14-year-old Beth Mitchell made her objections shockingly clear. The headteacher, Sarah Wild, recalls a member of staff calling frantically: “There’s a girl here covered in blood.”

Over the next month at Limpsfield Grange in Oxted, Surrey, Beth cut herself three times a day; she sabotaged lessons and shunned the other girls whom, she says, “seemed very weird”. Beth is autistic and has been diagnosed with pathological demand avoidance, meaning she would go to great lengths to avoid situations that filled her with anxiety – one of the prominent symptoms of girls on the autistic spectrum. Her small mainstream school had said they could no longer cope with her.

Finding a strategy to tackle Beth’s behaviour was just one of the daily challenges that Wild and her staff confront at Limpsfield Grange, the country’s only state-funded residential school for girls with special needs. It was Wild, whose past experience was working with children who have communication difficulties – a key feature of autism – who realised, when she became headteacher three years ago, that a high percentage of the girls were exhibiting behaviour on the autistic spectrum. “My question was: why aren’t we recognising this and doing something about it?”

"The National Autistic Society talks of five times as many males to females with autism, but nobody has firm statistics"

They set about getting those who needed it statements (56% of Limpsfield Grange’s 70 pupils now have statements on the autistic spectrum), as a first step towards devising a 24-hour pastoral and educational programme.

Wild, known by students as “Mummy of the school”, tempers the relaxed, jokey atmosphere with a “tough love” approach. If a girl finds a very visible place to sit and cry, nobody takes any notice; if the same girl concentrates hard in class, she gets lots of praise.

Wild says: “Autism in girls is massively under-diagnosed and as a result many are expected to cope in mainstream school. They often struggle, are bullied and isolated and become very unhappy.”

The National Autistic Society (NAS) talks of a perceived ratio of five times as many males to females with autism, but nobody has firm statistics. And, according to its 2012 survey, just 20% of girls with Autism who responded had been diagnosed by the age of 11, as compared to 50% of males. The survey also suggests that 42% of females have been misdiagnosed, as compared with 30% of males.

Dr Judith Gould of the NAS is working on an innovative way of using the data to help those working with girls to ask the right questions, and recognise how girls mask their symptoms and need help specific to them.



“Autism is seen as a male thing, and boys are often physical in expressing themselves when unhappy, whereas girls implode emotionally,” says Wild. “Boys tend not to be interested in contact and friendship, whereas girls desperately want friendship, they become obsessed very easily if they focus on someone as ‘theirs’ – whether a girl or a boy – and they yearn for boyfriends.”

Wild gives the example of one girl who texted a boy “60 times in an hour” and had 1,160 photos of him.

Girls with autism are likely to worry about body image and get very involved with TV series and celebrities, says Carol Povey, director of the NAS’s centre for autism. And there is a clear association between autism and eating disorders, as a report by Cambridge University’s autism research centre, led by Professor Simon Baron-Cohen, notes.

“Autism in girls is massively under-diagnosed and as a result they often struggle, are bullied, isolated and unhappy”
While boys tend to be diagnosed as young as three, late diagnosis can be a problem for girls, whose behaviour can be dismissed as “teenage hormones”. “They are full of emotion and implode into isolation and depression if things go wrong,” says Wild. Things seem to start going really wrong at about age 13, she says, when many become school phobic.

The school has taken part in a documentary filmed over six months in the hope it will help autistic girls’ behaviour to be more widely recognised.

When I visited, I meet Beth, who nowadays is articulate, sociable and academically high-achieving. She knows she is “different” but believes her autism won’t stop her fulfilling her dream of becoming a children’s nurse.

Her breakthrough came in year 9, she says. “Mrs Chips, my year 9 teacher, was the first person I bonded with. She helped me with schoolwork, but also I had one-to-one sessions every day to talk my worries and anxieties out. I had never been able to concentrate before because things kept worrying me.”

Her mother, Emma, says Beth arrived at Limpsfield with a spelling age of six, but now has taken GCSEs aged 15. “We have watched Beth set herself up to succeed, and she is determined to go on to college and possibly university. This from a girl who cut herself every time things looked too worrying.”

The school has a fairly traditional academic curriculum, but with only 10 girls to a class. Wild says she has high expectations for everything the girls do, explaining to them that, after school, they will need to get a job – and then they cannot “go into meltdown if somebody uses their coffee mug”.

Another feature of the curriculum here is thorough sex and relationships education, in recognition of these girls’ vulnerability. “They believe what people say and don’t read context,” says Wild. “Yet many are eager to have boyfriends and they need all the help managing that we can give.”


The girls all have daily one-to-one pastoral sessions to help manage their emotions. Wild describes a seven-year-old who talked of having “a tummy like a washing machine” before each emotional crisis. The school created an “emotions ruler” for her with green, amber and red. “Green is I feel fine,” explains Wild. “Amber is I feel wobbly. Red is like ooooh. On the back we have some strategies. So for this young person getting out of a troubling situation, moving around, going somewhere else in a structured way and coming back really helps.”

Abigail now comes over to join us. Wild explains how staff nearly gave up on her: “Abigail wouldn’t talk to anyone for six months. She wouldn’t follow adult instructions. It got to the point we felt we couldn’t do more.” Then the deputy headteacher “chose silliness as the way to reach Abi”. They played with her dog, Bella, and Abi thought the dog’s antics hilarious. Abigail explains: “The dog is Woofalot. I like nicknames.” And when Wild asks if she likes lessons now she replies: “Yes, because the grown-ups make me happy.”

Creative writing tutor, Vicky Martin, has helped some of the students to write a book, M is For Autism, about how it feels to live in a “tipsy-turvey, wobbly world” as a girl with autism.

The NAS is full of praise for the work at Limpsfield, which takes any girl they feel they can help (the local authority usually pays if the girl is statemented). Povey believes more such schools for girls are badly needed. The NAS has six co-ed dedicated autism schools; in addition, two new free schools, in Thames Valley and Cheshire, have devised ways of being responsive to girls, she says. The society is holding a conference on the subject in September.

Wild says she is encouraged to learn from papers she reads and conferences she attends, that more girls are being diagnosed. For now, her aim is to show the girls how valuable and talented they are. “I want all the girls to be encouraged to go into their local communities, to make a contribution. The things that they can do should be celebrated, because they’ve got amazing talents. They’re as valuable as anyone else. Just quirky.”

Girls With Autism will be broadcast on ITV on 15 July at 10.40pm

• This article was amended on 14 July 2015 to correct the number of NAS co-ed dedicated autism schools.
What is it like to be a girl with autism?
Beth was desperate to read a book about girls like her so with a little help from her friends she wrote one herself   


Abigail (right) has made a new friend at Limpsfield Grange school in Surrey (left) Photo: ITV

By Marina Gask
9:25AM BST 14 Jul 2015

Beth Worboys was desperate to read a novel aimed at girls like her. “All the books about autism were for boys,” says the 17-year-old. “I wanted to read a book aimed at anxious, isolated girls like me”.

Thanks in large part to Beth, that novel now exists. At a 2014 autism event, the teenager, then a pupil at Limpsfield Grange, a Surrey-based school for girls with autism and communication difficulties – and the subject of an ITV documentary tomorrow – cornered Robert Pritchett, a leading figure at the National Autistic Society. She persuaded him to fund her book. The resulting novel, M is For Autism, was published last week. Co-written by the entire cohort of the school, it allows the reader to view the world through the eyes of a girl with autism. And with experts now recognising that female autism often goes undiagnosed, it’s a novel that could change lives.

“I started having open conversations with the girls about their struggles to get diagnosed, and their anger that people didn’t believe the level of difficulty they experience in day-to-day life,” says Sarah Wild, headteacher at Limpsfield Grange. “They’ve spent a long time feeling really alone and don’t want other girls to feel as isolated.” 



Girls from Limpsfield Grange school pose for a group photo


Written over three months in collaboration with 72 students during a series of workshops led by playwright and creative writing tutor Vicky Martin, M is for Autism invites us into the anxiety-ridden world of M. Drawing on real-life experiences, it captures the highs and lows of being “different in a world of normal”.

“We work-shopped in a Mike Leigh-style collaborative way, with the girls giving me ideas and me throwing others back,” says Vicky. “But they weren’t prompted – it's their voices in the novel.”

It could make interesting reading for adults too – parents, teachers and women who may identify with M. “There’s a tsunami of women with undiagnosed autism out there struggling with mental health issues,” says Sarah.

Beth is not like these women in that her autism was diagnosed by the time she was four. Aggressive and angry as a toddler and with delayed speech, she was different from her five siblings, and by the time she was 11 she was suffering from Tourette’s syndrome and obsessive compulsive disorder (OCD), both of which are linked to her autism. 


Head teacher Sarah Wild wth pupil Abigail

 “The anxiety I felt all day at mainstream school used to make me vomit when I got home,” she says. “It was a daily struggle. Everyone else had friends but I had none, and fitting in was really hard. I always thought I was in trouble with the teachers when actually they weren’t cross with me, but I’d worry about it all day. I made out I was fine in class because I wanted to be like everyone else. I couldn’t understand why I wasn’t.”
In some ways Beth was lucky. A recent study from the Kennedy Krieger Institute in Baltimore indicates, while for boys the mean age at diagnosis is three, for girls it’s four, and for many diagnosis occurs quite a few years later. This is perhaps because girls exhibit different and less severe symptoms.
“When people think of autism, they don’t think of a girl or an adult woman,” says Beth’s mum, Gail. 



Sarah adds: “For 30-odd years following Hans Asperger’s pioneering research into Asperger Syndrome [high-functioning autism] it was believed that girls didn’t suffer from autism at all as the condition was only identified in boys.”

Recent years have seen a shift. Estimates vary and, while some studies have found that for every four boys diagnosed with autism, one girl has the disorder, experts have also speculated that many girls with Asperger syndrome are never referred for diagnosis.

“In the last five years, there’s probably been an increased awareness in the medical profession that girls on the autistic spectrum present very differently,” says Sarah. “The stereotype of autism is someone a bit locked into themselves and obsessive, but girls are more subtle than that. In conversation they can take turns to speak, make eye contact and engage in small talk, although they probably don’t understand the subtext of it.

“Some call it masking, but we call it social formatting, as in essence it’s copying and pasting someone else’s behaviour and trying to make it your own, but without understanding where that comes from.” 


Three pupils from Limpsfield Grange visit the school's llamas

Social situations can take both a psychological and a physical toll on girls on the autistic spectrum.

“They might seem fine at school or in social situations, and they’re hardwired to please, but then they’ll go home and have epic three-hour meltdowns,” says Sarah. “These can include screaming, crying, vomiting, violence, not eating, imploding, trashing things, pulling their hair out and banging their head against a wall.”

There is no research on the number of women on the autistic spectrum, but clinicians are now saying anecdotally there are probably a significant number of undiagnosed cases accessing adult mental health services for depression, OCD, eating disorders and self-harming. Staff at eating disorder clinics in Birmingham recently discovered that, of women in their twenties attending the clinics, between 60 per cent and 70 per cent were undiagnosed autistic women.

Limpsfield Grange, believed to be the only all-girls school for autism in the UK, follows a similar curriculum to a mainstream school, but with smaller class sizes. Students are also taught how to recognise difficult emotions, and to learn strategies to prevent meltdowns. Since Sarah became headteacher in 2012, she and her students have come to see it as their mission to get people to understand that female autism looks very different to our notions of the condition.

And this month, they’ve achieved just that. It’s hard to imagine how 72 pupils could end up singing from the same hymn sheet, but Vicky insists co-writing the book was a joyful experience – if intense.

“There was anger from the girls and a passion to challenge people’s misunderstandings,” she says. “It was a magic moment when I realised they were truly on board with the project.” 


 
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