About 700,000 people in the UK are on the autism spectrum, according to the National Autistic Society

Five times as many males as females are diagnosed

Autism is under-diagnosed in females

“I'm Maura Campbell.

I was born with the social skills of a used teabag.”

“That’s how I described myself at the BBC Ouch storytelling event at the Edinburgh Festival Fringe last year.

I'm now 50. Six years ago I was diagnosed with Asperger syndrome, a form of autism. Like many women, this came after the diagnosis of my son, Darragh.

If it wasn't for this, I'd have gone through the rest of my life unaware of why I felt different.

As a child I'd felt as though everyone but me had been given a manual on how to behave around other people.

I was more comfortable around pets. Because I performed well academically and masked my anxiety, I flew under the radar.

People assumed I was just shy.

When my autism was identified, it felt like taking off a corset I didn’t know I’d been wearing.

I understand now that I have a brain that processes sensory and social information differently from most other people.

I can take better care of myself by managing my social energy and avoiding sensory overload. I have found a sense of identity.

Women do not need to fear a diagnosis - it may help explain so much. Whether to disclose it is, of course, a personal choice.

I am living the life I want to live.

I have an interesting and rewarding career in Northern Ireland's civil service alongside supportive colleagues who accept me as I am.

Since Edinburgh, I've continued writing about autism and disability and had several articles published. I've co-authored a book along with some of my autistic sisters from around the globe, some of whom have become close friends.

Most importantly, my diagnosis has enriched my personal relationships and made me a more confident mother.

Darragh and I have a special bond and he makes me proud every single day.”

“Keep scrolling to meet six other women who - like me - only found out they were on the spectrum when they reached adulthood.”

Interviews by Lucy Edwards

“Autism can be harder to diagnose in girls than boys.

I wasn’t diagnosed with Asperger’s until I was 23.”

Hannah

Cambridgeshire, 28 years old, PhD student

“I’m carrying out PhD research at Anglia Ruskin University into autistic females who may go undiagnosed.

Women and girls often have a natural drive to fit in socially, and so the symptoms they present with aren’t stereotypically ‘autistic’.

They can be more compelled to make friends - and so they learn to mimic non-autistic people.

For example, they might find making eye contact difficult. I know I did.

I’ve learned to count it out. I will look away for a few seconds and then back.

I’ve watched people carefully and studied psychology to degree level to get me to the point where I can now act quite naturally.

But learning that social repertoire has taken me many, many years.

When I was diagnosed, it explained quite a lot of separate things in my life that weren’t working out.

When I was younger, I had this really deep and rich fantasy life where I would just imagine situations. I would spend all day in my own world.

I couldn’t play with other children. I was absolutely useless at trying to get into the imaginary games of others.

At school, I suffered from depression and mental health-related issues and from the age of 14 I was taught at home.

During my A-levels I developed quite severe mental health problems and bad depression and anxiety.

Doctors focused on the depression, rather than thinking about a possible autism diagnosis.

At one stage they thought I might have borderline personality disorder (BPD). Looking back, that was quite frustrating.

I think it’s a gender bias. Girls are better socially and so can be diagnosed with BPD rather than autism.

I thought going away to uni would fix things. I went to York to do psychology. I made friends, but never really attended lectures.

The academia was never a problem, it was the way I’d go about my learning. I’d be hyper-focused on one project - for days - and would need a lot of time extensions.

It’s the same today with my PhD.”

“The breakthrough came when I saw an art therapist to help with my anxiety.”

“After several months of seeing her, she suggested I may have Asperger’s. It was from there that I worked at getting my diagnosis.

I’d done my dissertation on the condition and I didn’t think it was something that females - someone like me - could have.

Getting diagnosed gave me relief.

I now realise loads of women and girls have gone through - are still going through - exactly the same thing as me.”

“I used to think ‘I don’t seem to fit on this planet.

I don’t seem to be like other humans.’”

Jasmine

Greater Manchester, 26 years old, performer

“I genuinely thought I was an alien.

It sounds silly but that was the only thing my childhood brain could comprehend.

When I was a baby people thought I was deaf. But I wasn’t deaf, I just wasn’t paying attention.

Then as a toddler, it was like I was always thinking logically and the other kids were just being reckless.

Why would I want to get splinters up my bum from a wooden slide in the playground?

I got bullied badly in school. I guess people saw me as an easy target.

It wore me down. In class I always felt I had some kind of learning difficulty - some kind of mental blockage.

When teachers put me on the spot and asked me questions, my brain totally shut down. It needed extra time to process what they were saying.

I only decided I needed to find some sort of diagnosis when I got my teaching qualification from university. I just thought, ‘I’m sick of this. I know there is something wrong with me. I need to find out.’

I paid £50 to see if I had dyslexia. During the test the educational psychologist said I wasn’t dyslexic, but I did have dyspraxia [a condition affecting physical co-ordination].

She also said my results suggested I could have autism. That’s what gave me that extra incentive to get tested. I finally got diagnosed when I was 22.

Now, the majority of my friends are on the spectrum. It’s just easier that way.

I joined a creative group led by people with mental health issues. They ran comedy workshops - and that’s what got me into performing.”

“Doing my stand-up, I don’t feel as awkward as I do talking to people socially. It feels really natural to be up there performing.

I don’t have to talk to anyone specifically. I am talking at people. I think that’s the difference.

I’m not constantly thinking, ‘When can I chime in? When is my time to talk? Would it be rude if I said this?’

I take my dogs on stage. They give me extra comedy material.

I also feel calmer being able to stroke them while performing.”

“People remember the comedian with dogs strapped to her body.”

“I'm proud to be autistic.”

Amanda

London, 40 years old, teacher

“To be honest, I don’t really have any friends. People that I call friends are those I’ve met through work or on a Facebook group. But I don’t have any actual friends who I would go out anywhere with.

I don’t like people coming round my house. It’s like my little sanctuary. It probably sounds a bit weird.

My husband’s quite sociable and gets on with everybody - so he’ll go to parties without me. He lets me know they’re happening, but leaves the decision up to me. Ninety-nine per cent of the time I won’t go.

He used to get upset when I refused to go - but now he knows I’m not rejecting him. I just know I can’t put myself in a situation where I’d be very uncomfortable.

Both of my children are autistic. My daughter was diagnosed when she was 13. My son, who’s 15, got diagnosed when he was four.

I’d been reading up about Asperger’s ahead of teaching an autistic child at school. I realised the characteristics sounded a lot like my son’s.

He’d be on the carpet at school upside-down and facing the wrong way - not looking at people. The teachers didn’t think he was listening but he was taking it all in.

Over time I felt like I really identified with him. I could really understand his thoughts and I started to think, ‘Maybe I have Asperger’s as well?’

I would misinterpret things at the primary school I worked at. I was making mistakes because I didn’t get it. I got to a real low point.

That was when I decided to get an autism assessment. I got the diagnosis in early 2012. It was a relief.

‘Nothing is wrong with me, I’m just autistic,’ I thought.

From then on, I could understand why I struggled with social situations and why I couldn’t make and maintain friendships.

I started to accept myself as I am - because I hadn’t done that up to that point.

Where I grew up, I was the only mixed-race person I knew. It was a white working-class neighbourhood.

People obviously knew my mum was black but they didn’t know what that made me.

I didn’t know what I was either. I was made an outsider because of my race.

My mum’s from St Lucia in the Caribbean and when I went there they didn’t know what to make of me either. I wasn’t a black person to them. They used to call me ‘yellow girl’.

I think St Lucia is now starting to realise there are autistic kids - and that being autistic is not a bad thing. It’s taken a long time - they’re kind of where we were here in the UK about 20 years ago.

But even here, some communities are still struggling to identify and understand autism. That’s the experience from mainstream students I’ve taught, as well those with autism.

In some cultures, parents try to hide it because they don’t want their child to be seen as different.

In 2014 I started offering autism talks and training.

I wanted to help parents and children understand it’s OK to be autistic.

There’s nothing wrong with having the condition - it’s just how their brains are wired and how they see the world.”

“I love being a teacher.”

“Autism provides me with a number of gifts and talents.”

Claire

Fife, 35 years old, psychologist

“‘There’s no way I can be autistic and a clinical psychologist,’ I thought.

‘It’s incompatible because autistic people don’t have empathy.

So if I’m autistic it means I can’t be empathic.’

That’s the level of naivety I had at that time.

I had a bit of a light bulb moment one day in a lecture theatre during my psychology training. We were being taught about different conditions - including autism.

I thought, ‘Oh my gosh that sounds really like me. That is really freaky.’

But some of it didn’t fit.

We weren’t told about how it presents in women. We weren’t shown the diversity between the sexes.

I think there’s a great desire in girls to be social, and autism diagnoses are often based on male traits.

So girls and women say, ‘No. I don’t have many issues with wanting to be social. And no I don’t like car engines.’

By saying that, they’d lose points on the diagnostic measures.

There were missed clues when I was younger.

I went to high school in the US, and so some of the quirky traits that make me ‘me’, were not seen as being odd or bizarre.

They were seen as belonging to the Scottish girl - culturally attributed rather than individually attributed.

I also love fantasy fiction. I used read and read and read. I got lost in The Lord of the Rings. I would dress up as an elf. I went to Comic Con meetings.

That was my way of escaping.”

“I've bought some land with my savings.

I've put ducks, chickens, horses and goats on it.

I work with autistic people there.”

“Many of the autistic people that come to me have a lot of trauma. That trauma is from living in a neurotypical world, where they’ve been forced to be something they’re not.

I don’t see it as therapy because it’s not treatment. I see it as developing life skills.

It’s a process of developing trust. We just hang out with the animals - they’re like safe brokers. It’s not hugely grounded in theory, it’s just human experience and it works.

I was diagnosed at 32 - three years ago - and it has completely changed my life, and my identity, for the better.

I now have more self-acceptance of why I do the things I do. Autism provides me with a number of gifts and talents.

And so to erase the negative of something would also mean I take away all the positives.”

“The music has been through everything with me.

People just come and go.”

Anna

West Midlands, 27 years old, works with people with learning difficulties

“As a teenager, I couldn’t work out what was wrong. I felt out of place and teachers labelled me as ‘naughty’.

You get to the point where you don’t think you should be on the same planet as everyone else - because you can’t understand anyone and they don’t seem to understand you.

It’s like a spaceship has come down, dropped you off as a baby, but given you no idea what you’re supposed to be doing.

I got my diagnosis when I was 22.

My mum started working at Sheffield Adult Autism and Neurodevelopmental Service.

One day she came back with a big stack of books and said, ‘I want you to read them because I think you’ve got this.’

I soon thought, ‘This is me. Everything that has happened to me - this explains it.’

At first my doctor told me I had borderline personality disorder (BPD). And also, ‘It’s just depression, it’s just anxiety - take these tablets.’

But when I did get my diagnosis, I still felt no-one around me understood or wanted to understand.

I looked at other people with really good jobs and nice cars. I thought, ‘Why can’t I do that? Why do I have to keep getting ill and quit jobs?’

I still tried to force myself into full-time work in call centres. I just couldn’t do it. The bright lights and the noise - the sensory overload.

Now, I work with people with learning disabilities.

My partner's a barber. He knows a lot of people. He’s got loads of friends and customers. He’s in a band as well.

There have been social occasions when I’ve panicked and had to go home. I just find it difficult to go around a room and say hello to lots of people.

But now he always tells me what’s going to be happening in good time. Plus who’s going to be there and the start and finish times - so I can mentally prepare.”

“I've become transfixed by blocks of council flats.

It sounds so stupid telling people.”

“I just find it so interesting. I end up spending hours and hours looking at pictures of them. It’s mainly brutalist, mid-century buildings - the really ugly, imposing ones.

I also think about the sociology. How people used to live and how communities were formed.

I do have a couple of friends but as I’ve got older I’ve lost interest in making new ones.

At school I didn’t feel very connected to people, I felt stronger links to the bands I listened to - they were my friends. I know that sounds a bit weird.

The music has been through everything with me, whereas people just come and go.”

“I want to be a university lecturer.”

Sophie

Derbyshire, 23 years old, studying for master's degree

“I got diagnosed just over a year ago - when I was 22. But it was at secondary school when I first thought I might be autistic.

My brother was diagnosed with autism when he was five and he attended a specialist school. I’d seen bits of his behaviour in myself, which made me wonder.

I think that in some cases, females learn to mimic behaviours to get them through life.

I think that sometimes, autistic girls copy social behaviour better than boys do, which is maybe why they aren’t diagnosed as early.

I’ve completed my degree and teacher training at Derby University. I am currently doing my master’s in inclusion and special educational needs and disability (SEND).

While on a teacher training school placement, my mentor spotted some aspects of autism in my behaviour.

For example, sometimes I would take things too literally, or I would sit on my own in the staff room and not socialise.

Back at uni, my lecturers said they’d picked up on similar things - so I went to get diagnosed. I paid £50 and the university paid the rest for a three-to-four-hour appointment with a psychologist.

When I received my diagnosis, I felt it explained a lot, which was good. However, I feel that having a label has both benefits and downfalls.

My autism mainly affects my sociability and expression - and I also have high levels of anxiety, particularly when there is change to my routine.

I tend to get obsessive over things like TV shows. I can watch them for hours and know the script by heart. I also have to pre-plan what I’m going to say and don’t like to be interrupted.”

“I now get more help from the university.”

“I get a taxi to and from classes as public transport causes me anxiety. I can claim back expenses on printing paper and ink as I hate reading things on a screen.

I also get specialist mentoring support to help with any worries and to work on my interview skills.

It was good to tell the other people on my master’s degree course that I'm autistic. There are only about five of them so I felt comfortable explaining. I wouldn’t have told a large class, like the 80 or so people who were in my undergraduate class.

I want to become a lecturer eventually and it would be wonderful if that was here at Derby.”

 
 

Girls On The Spectrum Often Go Unnoticed

By Rita Giordano

PHILADELPHIA — “Weird.”

Nichole Lowther has heard the word her whole life.

Bright, even charming, she nonetheless never felt comfortable in groups or making small talk. A hard worker, she had a tough time finding or keeping a steady job. Could it have been her unvarying wardrobe, her lack of eye contact, her encyclopedic knowledge of “Star Trek?” Then there were the times in public when a loved one would pull her aside and plead, “Be normal.”

But a few years ago, when her son Matthew, now 6, wasn’t meeting developmental milestones despite early intervention services, Lowther took him to a specialist. The doctor noted certain telltale behaviors of autism — walking on his tiptoes, rocking, wiggling fingers near his eyes.

“I said those weren’t autistic behaviors, because I do them,” Lowther, of Burlington County, recalled telling the doctor. “She said, ‘Have you ever been tested?'”

So, at age 42, Lowther was tested. Textbook autism, she was told.

“It was such a relief,” Lowther said. “I was like, ‘OK. Now a whole lot of my life makes sense.'”

For women and girls living on the autism spectrum, diagnosis too often comes late, if at all. Though boys with autism spectrum disorder (ASD) — the country’s fastest-growing developmental disability — are estimated to outnumber girls by 4-1, experts now say that may be because many females are overlooked, their symptoms dismissed or misread.

“If girls are chronically diagnosed later than boys, they’re missing that most valuable treatment time,” said Diana L. Robins, head of the A.J. Drexel Autism Institute’s Research Program in Early Detection and Intervention. Research has shown that children who get treatment before age 2 or 3 show the most improvement.

But for many females, diagnosis often doesn’t come until they are well into adulthood. That can mean decades of social rejection, depression, anxiety and unrelenting confusion.

“We’re not doing a great job of identifying all the females,” said Thomas Frazier, chief science officer for the advocacy organization Autism Speaks. “We’re going to have to identify females better, particularly females who are more cognitively able, and then do studies on them to see what the differences look like. The fact of the matter is, it’s even hard to study right now” because the subjects are so limited.

Female autism often expresses itself differently. Recent studies suggest there may be genetic differences, even brain differences, between males with autism and females. Some research indicates the physical makeup of the brain in females with autism may be more like the brain of neurotypical males than males with autism or neurotypical females.

ASD, though it covers a wide range of traits, is characterized by social and communication challenges, repetitive behaviors and sometimes sensory hypersensitivity. Many professionals — doctors, teachers, counselors — are used to looking for autism as it appears in boys. But females on the spectrum hide in plain sight. They go undetected because their behavior may conform more to social norms — not enough to be fully accepted, perhaps, but enough to elude detection.

They may be glossed over as merely shy. Or they may be quite verbal, even chatty, but they are confounded by the complexities of the neurotypical social world. Seeming directness may be misread as hostility.

Some have been told they can’t have autism because they love writing and language, not science or math — a long-standing stereotype that has been debunked. Many females with autism favor functional clothes or limited colors; one of Lowther’s friends jokes about her “prison jumpsuit” wardrobe of solid neutral tones. But some admit to studying fashion so they can fit in, similar to lower-functioning children with autism who echo others’ words they don’t actually understand.

Girls may exhibit autism’s repetitive, narrow interests, but theirs may be less pronounced than boys’ or more like neurotypical girls. Boys with autism may become fixated, even obsessed, with one cartoon character or a bus schedule, but what’s so odd about a little girl who sleeps with a bed full of plush animals? What may go unnoticed is that the little girl never plays with those stuffed animals.

Yet those girls can grow into successful women who view their difference as a gift. Temple Grandin is an internationally known animal-behavior expert and autism advocate. The poet Emily Dickinson also is believed by many people to have been on the autism spectrum.

“They are very often incredibly creative individuals, almost like Renaissance people who are extremely bright,” said Dania Jekel, executive director of the Autism Asperger Network (AANE), a national advocacy group. “On the other hand, the anxiety can be completely crippling for them, especially when they are misunderstood. People see a verbal, bright woman, and the expectations for that person are way, way high.”

Like many bright young people, Nomi Kaim was excited to be venturing forth in life when she enrolled in Bryn Mawr College in 2003. The campus was a long way from her New England childhood, where she was bullied, called a “social retard” and fell into a depression she couldn’t shake.

But Bryn Mawr only lasted a year. The work wasn’t so hard, but there was too much of it for her to process. Her roommate hated her. There was too much noise everywhere. Her depression was crushing. When she went home, she was hospitalized, one of many times in the years to come.

It was around then, just before her 21st birthday, however, that her issues finally got a name. She was diagnosed with Asperger’s syndrome, a high-functioning form of autism.

“I felt this great sadness,” she said. “I felt this sense of dread and humiliation.”

Eventually came acceptance. She hasn’t been able to hold a full-time job, but she volunteers at AANE, counseling other women.

Kaim, 35, thinks that if her autism had been detected when she was a child, if she’d gotten help early enough, her life might be different. She might have finished college and become a writer. But it’s more than that.

“My self-esteem might have been preserved,” Kaim said. “I might have felt less afraid of the world and not so alone. I felt I was defective.”

Depression and anxiety frequently accompany people with ASD but experts find that depression is especially prevalent among females beginning in adolescence. Eating disorders are also common. So is post-traumatic stress disorder, as well as emotional or sexual victimization.

“It’s a major issue because women on the spectrum have a hard time gauging the motives and depth of feeling from other people,” said Anthony Rostain, a professor of psychiatry with Penn Medicine and an expert in adult development disorders. “In the desperation to feel appreciated, they’re often taken advantage of, and sometimes even more seriously mistreated or abused.”

Jessica Brown, 36, of West Philadelphia, was 30 years old before she was diagnosed. Even then, she recalled, one man she dated would try to pressure her to do things sexually she didn’t want to do. He’d say, “Oh, that’s because of your autism.” Looking back, she said, “it felt like a form of gaslighting.”

But she had always felt like an outsider. Growing up in a black, middle-class family in the largely white, suburban town of West Chester, she often felt the odd one out.

As a girl who didn’t understand the neurotypical world’s social cues, Brown was told she was mean, even a bully. A college honors graduate, she nonetheless had trouble keeping jobs because of social missteps, rather than work performance.

Now, she works with children with special needs. She finds joy in reaching those others cannot — like a little boy deemed nonverbal who piped up and said, “Jessica. Hi.”

Brown is learning her own abilities.

“I can read raw emotion really well,” she said. “I’m not great at the social stuff, but I can really motivate kids. It’s easy to let them know I love them.”

Self-knowledge has helped Lowther, too.

Like a lot of people with autism, she finds social media a blessing: “I join groups that are focused on things I like, and I can say things without being labeled a freak.”

After-school programs for nonverbal children like her son have proved scarce, Lowther said, so they find their own adventures. Sometimes, he melts down in public, she said, and people stare. “So I start acting like a dinosaur to take the attention off of him. There’s something to be said for a 40-year-old woman running around the Moorestown Mall acting like a dinosaur.”

At times, she still needs her noise-canceling headphones: “Some sounds I can feel in my bones,” Lowther said. Adults still get annoyed by her behavior, but at least now they know why.

“To be honest, knowing that my son and I are on the same journey is cool,” Lowther said. “He goes to therapy to help with behaviors and speech, and I think that they’re helping me, too, because I sit in on them.

“Maybe I’ll never be ‘normal’ to most people, but they don’t seem to enjoy themselves very much. I have my husband and son, and I find my own joy. I’m never lonely in my imagination. There’s always something to do there.”

© 2019 The Philadelphia Inquirer
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