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Wednesday, 19 September 2018 09:16 am

Autism – it’s time to start looking beyond the male statistics

No matter who you are or where you come from, you most likely find comfort in your own community. But what if you were ignored by that community. LAURA WILTSHIRE talks to young women with Asperger’s Syndrome.

“It’s a really important part of who I am, I wouldn’t be me if I didn’t have Asperger’s Syndrome, so don’t treat it as a disability or something to be cured or gotten rid of,”

Picture someone with Asperger’s Syndrome.

You are thinking of Sheldon from the Big Bang Theory. Or maybe Ray Babbitt from Rain Man.

Someone with strange habits, odd ticks, and strict routines. Someone who can tell you everything about a specific topic which you probably don’t care about.

You are picturing a male.

Laura is 25. She’s studying to be an early childhood teacher, likes baking and reading and volunteering for a performing arts charity called StarJam.

She also has Asperger’s Syndrome.

Based on current numbers, Asperger’s Syndrome affects nine times as many boys as it does girls. But researchers at University College London think this gender disparity is not because girls experience Asperger’s at lower rates. Rather they present differently to boys, they are less likely to receive the correct diagnosis.

“I got diagnosed as ADHD, because that’s what they do, they diagnose you as that,” says Laura.

“Mother knew I didn’t have that, she was like ‘no’, and kept pushing.”

Laura eventually received a diagnosis of Asperger’s Syndrome around the age of 11, although if diagnosed today, that label would be changed to Autism Spectrum Disorder, or ASD.

Girls with ASD, therefore, are a niche group within an already niche group. Diagnostic standards, support and research are heavily focused on boys with ASD, despite girls facing different challenges.

“With girls, often the special interest often tends to do with things with, like, another world,”

So what is ASD, and what’s it’s like to be part of a community which, whether intentionally or not, does not focus on you or your experience?

ASD is a developmental difference that was originally classified as four separate disorders but has since been merged into a single spectrum.

No two people on the spectrum are alike, the same way no two people are alike.

However, there are some common characteristics including a reliance on  routine, hypersensitivity to various stimuli such as noise, and having ‘special interests’ in specific areas, like train time tables or plane engines.

Except that’s not entirely accurate.

“With girls, often the special interest often tends to do with things with, like, another world,” says another girl with ASD, who wished to be referred to as anonymous. “It’s often sort of escapism, and what I mean by that is escaping into other worlds.”

She says boys, like her brother, may have a specific interest in something like a train timetable because it’s something predictable. A train will always arrive at a certain station at a certain time, and then carry on to its next certain destination.

Girl’s special interests, however, tend to be a form of escapism, for example an ancient civilisation or a fantasy world. They are a way of escaping from a world she does not fully understand and is probably unhappy in.

“I was obsessed with Ancient Egypt and wouldn’t talk about anything else for a year,” she says.

A parent might be worried about their six-year-old boy being obsessed with train time tables. Their six-year-old girl’s interest in a fantasy world, however, is so normal you might be more worried if they weren’t.

Altogether Autism is a New Zealand organisation which does research and provides information to people on the spectrum and their family.

According to Altogether Autism, special interests are one of the main diagnostic criteria in girls with autism.

So, if girls aren’t presenting ‘typical’ special interests, their parents and teachers might not pick up on it, and if they do, specialists might miss it as an ASD symptom. Because of this, girls are less likely to be diagnosed, or they are misdiagnosed, like Laura was when she was diagnosed as ADHD.

“There’s a whole broader approach about how the questions are asked and you’re not just asking for yes and no questions but you have to get a whole description.”

Medical Doctor, Ava Ruth Baker, whose has post graduate qualifications in mental health and autism,  says the people she thinks are most underrepresented are girls and adults who are on the spectrum, because their ways of presenting may not have been picked up on.

She thinks part of the issue in New Zealand is the most commonly used system of diagnosis, called the ADI-R or the ADOS.

ADI-R is an interview-based system, and ADOS standardised assessment. These systems allow the assessor to see if certain behaviours are, or are not present in a person, and form a diagnosis based on that.

Dr Baker thinks this misses people with more subtle presentations of ASD. She was trained in a system in the United Kingdom called DISCO, which she believes is better at catching people who fall through the gaps than the ADI-R and the ADOS.

“There’s a whole broader approach about how the questions are asked and you’re not just asking for yes and no questions but you have to get a whole description.”

“DISCO involves a whole broader approach to the number and range of questions asked, and to how they’re asked and analysed. It elicits not just yes & no answers, but detailed descriptions with examples.”

This means not only do people get a diagnosis, but a holistic profile of strengths and weaknesses,meaning better support systems can be put in place.

“My parents used to come into meetings and get the school on board, because there was bullying and miscommunication between teachers, just ignorance and a lack of understanding.”

Further support is a major issue for most girls with ASD.

For example, Laura struggled in English while at high school, but did not receive any extra help. “In English, I had no teacher aide, no nothing,” says Laura.

The effect of this was that she did not receive any NCEA English credits, a requirement to go to university in New Zealand.  “In English, I didn’t get my credits, so I can’t go to proper university, that’s why I have to do my course here (at polytechnic),” says Laura.

The girl who asked to be anonymous, on the other hand, dropped out of school in year 10, and eventually finished her qualifications through correspondence school.

“My parents used to come into meetings and get the school on board, because there was bullying and miscommunication between teachers, just ignorance and a lack of understanding.”

Even outside of school, support groups for ASD tend to be very boy focused.

“I was stuck with all the boy groups,” says Laura, “every time we found something, there was nothing for girls, it was all boys.”

“Growing up I didn’t have any way of meeting any other girls with Asperger’s Syndrome,”

The girls spoken to for this article connect through a Facebook group for females on the spectrum.

It was founded in 2016 by Rachael, who asked that her last name not be used. She decided to take things into her own hands and connect people.

The group, Butterflies and Rainbows, provides a space for girls and women on the spectrum to talk about different issues and coping mechanisms they may experience, as well as giving them a chance to meet other people on the spectrum.

“Growing up I didn’t have any way of meeting any other girls with Asperger’s Syndrome,” says Rachael. “I think it’s really important to meet people like you, because whenever I meet someone else who’s a girl who’s on the spectrum, it’s so immediately relatable.”  

Laura joined Rainbows and Butterfly’s and has found it really useful. “We can still get information from others. That’s been helpful.”

Like Laura, anonymous has plans to be an early childhood teacher, and although she currently has no study plans, she is volunteering at a kindergarten.

“I think some people would think that it’s (early childhood center) one of the last places someone on the Autism Spectrum would want to work, because of course it’s very noisy, things are always happening, things are unpredictable. There’s really not a whole lot of structure.”

When she’s focused on looking after the child though, the environment becomes less of an issue.

“The other teachers are really supportive, you have to be a certain kind of person to be an early childhood educator.”

She thinks the kind of work early childhood educators do mean they tend to be kind and compassionate, and she finds they have a lot of understanding for her and her autism.

“That’s a really nice environment to feel welcome too. Those aspects cancel out some of the sensory issues.”

“I also feel sometimes because I’m on the Autism Spectrum I’m some sort of sub human, or not the ideal human, which logically I know is absurd.”

Autism is not visible. No-one can tell by looking at someone that they have autism.

This is a positive and a negative.

A person with autism might avoid the stares and condescending behaviour people with, for example, a physical disability might get.

But it also means the world has no explanation for their behaviour, and might find it weird, or rude.

“It’s kind of a surreal question to say do you wish the world knew?” says the anonymous girl.

“In some ways yes, because it would make life a lot easier, I would feel like I’m not pretending half the time, it would feel like I’m not constantly trying to meet expectations that in reality I will not, and maybe never will meet.”

But she says it’s not realistic, in this world, for people to know she has autism and think of it as just part of her.

“I also feel sometimes because I’m on the Autism Spectrum I’m some sort of sub human, or not the ideal human, which logically I know is absurd.”

So what do these girls want people to know about being a girl with ASD?

“It’s not just males, its females as well,” says Laura.

Rachael wants people to stop assuming she wants to be ‘normal.’

“It’s a really important part of who I am, I wouldn’t be me if I didn’t have Asperger’s Syndrome, so don’t treat it as a disability or something to be cured or gotten rid of,” says Rachael.

“I wouldn’t not have Asperger’s for anything.”

 

 

 

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