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Wednesday, July 1, 2015

Why Autism Spectrum Disorders are Under-Diagnosed in Women and Girls

From ABC Radio News Australia

By Lynne Malcolm and Olivia Willis
June 25, 2015

Many people tend to think of autism as a male disorder, but emerging research shows that girls often have different symptoms which cause them to slip through the net. These girls and women are often misdiagnosed or go undiagnosed altogether. 

IMAGE: Research indicates that autism manifests  differently
in females than it does in males (GETTY IMAGES)

With the exception of a few notable women around the world, autism is widely considered to be a disorder that affects men.

Indeed, males are generally more affected by neurodevelopmental disorders than females, and boys account for more instances of ADHD, dyslexia and dyspraxia during adolescence. It appears that this imbalance is even more pronounced when it comes to autism spectrum disorder (ASD).

But as Francesca Happe, a professor of cognitive neuroscience at the Institute of Psychiatry in London, explains, statistics tell only part of the story.


"We think the social difficulties in some girls with autism may be less obvious. Some women with autism describe a strategy of copying somebody. They pick somebody in their class or workplace and they just copy everything about that person: how they dress, how they act, how they talk."
-- Francesca Happe, Institute of Psychiatry, King's College

‘The general prevalence suggests that about four times as many males as females get an autism diagnosis, and this varies across the spectrum,’ she says. ‘So the proportions are higher in high functioning or more subtle forms of autism, and more even at the lower end of the spectrum where there is an intellectual impairment.’

Happe says that while the gender disparity can sometimes be explained by biological or environmental factors, it is plausible that women and girls are also under-diagnosed.

‘I think we know very, very little really about how autism presents in girls and women. There are some studies, but the main problem is that the studies start in a clinic. If we are missing women and girls with autism because we are not good at recognising them, then studying those we do spot isn’t going to tell us very much about the ones we miss,’ says Happe.

Dr Janine Manjiviona, a clinical psychologist based in Melbourne, agrees that girls are under-diagnosed and misdiagnosed.

‘When you historically have a look at the whole history of autism, originally in Kanner’s descriptions, they were largely focused on males, and Hans Asperger’s clinical cases were all male,’ says Manjiviona.

‘Because [females] can present differently, they’re often not recognised as having ASD, and can be misdiagnosed.’

Evidence is emerging that autism manifests differently in females than it does in males. Happe believes girls may be better at covering up the more obvious characteristics of the disorder.

‘We think the social difficulties in some girls with autism may be less obvious. Some women with autism describe a strategy of copying somebody. They pick somebody in their class or workplace and they just copy everything about that person: how they dress, how they act, how they talk. That kind of masking strategy we don’t see very much in boys and men with autism’.

Research on women with autism suggests that they are more impaired, experience more intellectual difficulty and are generally hit harder by the disorder than their male counterparts.

Happe suspects that this is largely a result of subtler cases of female autism being overlooked by the current diagnostic system.

‘It’s an interesting question, why we might miss girls with autism, because on the face of it you might think that our expectations of social functioning are even higher for girls than for boys, and so maybe we should be more alert to these difficulties,’ says Happe.

In some ways, it’s this contrasting gender binary that leads clinicians to make diagnoses based on sex, not symptoms.

‘An example would be that when a clinician is deciding if a child has autism, they will look for rigid and repetitive behaviour, which might include unusual special interests. A boy with autism might have a fascination with electricity pylons and know all the facts about electricity pylons, and the clinician is going to go “ah-ha!”, that sounds pretty odd to me,’ says Happe.

In contrast, a young girl with autism might present with a fascination with a particular pop group, and spend time learning all the facts about that she possibly can.

‘When she says her interest is this pop group, the clinician thinks, “Well, that’s pretty normal.” So unless he digs deeper and finds out that actually she has no interest in going to hear them perform or even listening to their music … the clinician is going to be fooled into thinking, “Okay, this isn’t autism.”’

Because ASD can be missed in girls, women often don’t discover it until later in their lives.

Hannah Belcher was diagnosed with ASD at the age of 23 after many years of unsuccessful therapy for other psychological conditions.

‘I think the main problem was that my symptoms weren’t as obvious as they are in males … doctors just saw my anxiety and just saw that as the main diagnosis, without really considering why is that there,’ says Belcher.

Belcher concedes that she too assumed she had an anxiety disorder and the possibility of having autism never occurred to her until she was diagnosed.

‘I studied it and I still never considered that I could have autism because my view of autism was also quite male stereotypical,’ she says.

Belcher believes that girls and women with autism mask their symptoms because of the social pressures they face growing up. The expectation to be polite and socially adaptable means girls become very good at ‘social mimicking’.

Socialisation might play a key role in how girls and women on the autism spectrum present, however, there’s growing suspicion that the underlying biology of ASD in males and females is quite different.

‘I think there are probably both biological differences and social and cultural reasons why we may not be very good at picking up autism in girls,’ says Happe.

One explanation for the unbalanced ratio is what psychologists refer to as the ‘female protective effect’.

‘We’ve done some work that suggests that girls who have autism have been hit harder or have a larger genetic dose than boys with autism,’ says Happe. ‘You can tell this because if you look at their brothers and sisters, the brothers and sisters of girls with autism are more likely to have autism or some traits of autism than the brothers and sisters of boys with autism. That’s suggesting there’s a bigger genetic hit for girls than for boys.’

Essentially, this means that while girls are less biologically susceptible to the disorder, the girls that do have ASD are affected more significantly because their genetic risk factors for ASD are stronger.

Although researchers are not clear on exactly why boys are more likely to be affected by ASD, there are a number of theories.

‘Simon Baron-Cohen has the theory of the extreme male brain, which suggests that all of us have a balance between our ability to understand other people, which he calls empathising, and our ability to understand non-social systems, he calls systemising. He says that in a male brain, the systemising is highly developed and the empathising is less good, and that autism can be thought of as a very extreme version of this,’ says Happe.

Although she describes Baron-Cohen’s theory as ‘interesting’, Happe doesn’t fully agree, and says it ‘mushes together a whole lot of things’ that are in fact ‘quite distinct’.

When trying to understand or make an ASD diagnosis, Dr Janine Manjiviona emphasises the importance of gathering comprehensive information from multiple contexts in order to prevent girls slipping under the radar or being misdiagnosed.

Manjiviona says that there are a number of other conditions which can overlap with autism, and girls are most often diagnosed when they hit puberty. As a result, there can be a crossover between the symptoms of ASD and eating disorders such an anorexia nervosa.

‘Yes, anorexia is one of the conditions that overlaps with ASD. It’s not the only condition and there are lots of co-morbidity issues with ASD, but controlling weight can be a way of fitting in, looking right, it can be part of an attempt to gain social acceptance.’

Manjiviona offers therapy to girls and women with ASD to help them deal with their concept of themselves and the anxiety associated with that.

Donna Rigoni’s five-year-old daughter Ayla suffers from autism and was referred by Manjiviona to a therapy program that aims to help prevent anxiety developing.

‘She’s in a small group of three children which are at the similar level to her on the spectrum,’ says Rigoni.

‘Ayla has been taught that you think with your brain and you feel with your heart. She understands that people have thinking bubbles above their brain. She knows that you can’t see it, but she knows that if they are looking at something, they would probably be thinking about that thing.’

‘That has been really helpful because there are days where Ayla has upset me, and I’ll say to her, “You’re hurting my heart, Ayla,” and she’ll go, “Oh, okay.” So she gets that.’

Rigoni says the social therapy has been an ‘incredible help’.

‘I think the earlier girls are diagnosed, you can give them so much more help. What I’m hoping is by the time Ayla gets to puberty, we will be prepared,’ says Rigoni.

Hannah Belcher’s autism was overlooked and misdiagnosed until her early twenties, and she says it’s critical to get the right diagnosis in order to prevent inappropriate treatment.

‘I want to see better diagnosis for females overall, and I want to see more females being picked up earlier in their lives when they can get the support at school they need, and just more awareness about the issue,’ says Belcher.

‘Certainly I think it’s a definite gap in our understanding of autism that needs to be addressed.’

Happe echoes this, and suggests that further study into the gender differences seen in autism may help our overall knowledge of the ASD.

‘There are women with autism who go and speak about their experiences and are such gifted orators, so funny, so poised on stage, that people really doubt that they even have autism,’ says Happe.

‘But then if you could see that same woman trembling at the thought of having to buy a ticket at the train station or having to brush past a dog in the railway carriage to get to her seat, you see the ability of some women with autism to mask their difficulties.’

‘Even though it doesn’t fit the stereotype of autism, it doesn’t look likeRain Man or one of the portrayals of male autism in the media ... how brave they are to struggle to live in our neurotypical world.’

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