Kate E. Reynolds

  • Jack Howes' article about Girls and Women on the Autism Spectrum

    In this wonderful world of ours, having autism, like I do, is tough. People with autism endure lower rates

    of employment, higher rates of bullying, enough social f***-ups to make Mark Corrigan seem like a charming, polished socialite and a lifetime of explaining to sceptical, uninformed people that autism doesn’t make you f***ing Rainman. It’s hard.

    And as with most things in life, it’s even harder if you’re female.

    Males are diagnosed with autism far more than females, with the ratio generally regarded as being around 4:1 male to female. With asperger’s syndrome, it’s a ratio of 15:1. Females, for various reasons, are not getting diagnosed with autism and are therefore not getting the help and support they need.

    There are many reasons why females are diagnosed far less than males. For a start, females tend to be better at masking their symptoms than males are. In The Complete Guide To Asperger’s Syndrome, Tony Attwood states how at school girls are generally better than boys at socialising, usually because girls are expected to be more social and hence they cope with this by copying other behaviours, using "intellectual abilities rather than intuition to determine what to say or do” in Attwood’s words.

    This means they end up masking the effects of autism and through no fault of their own make it harder to get diagnosed. Perhaps the main reason though why females don’t diagnosed is quite simple – men.

    As Carol Povey, Director of the NAS’s Centre for Autism states “Past research into autism has concentrated overwhelmingly on males, meaning that the way we understand the condition, culturally and clinically, tends to be based on the experiences and behaviour of men and boys”.

    The more that research into autism has a male bias, the more it sparks off a self-perpetuating cycle where all strands of autism, from the way it’s diagnosed, to its symptoms, to the way it’s portrayed in the media, to the way it’s treated, has the same bias towards males over females. In the words of Povey, it “Could be seen as a form of unintended structural discrimination.”

    I would argue that autism from its very start has been about males and its agendas dictated mostly by men. No different from, say, politics or the police or the media. And when that happens, however hard people try to achieve equality, you’re going to end up with inequality. See the aforementioned point of females being expected to be more social than males, which in its own way has a negative effect on rates of diagnosis.

    As an example, this study states how, for example, 85.8% of the participants in autism research by respected journals were male. The most common ratio suggests that 1 male is autistic for every 4.3 females, so using that figure, 76.75% of males should be participating just to stack up with that ratio – and that ratio is almost certainly wrong anyway in that it under-diagnoses females. 

    This other study here states how females are diagnosed both later on in life than males and are also more likely to be misdiagnosed or not diagnosed at all. Their autism will be palmed off as some sort of personality disorder or mental illness instead.

    This account in The Guardian in January is proof of that, as it took twenty four year old Mina three years

    and seeing three separate GPs to get a formal diagnosis. One doctor said she couldn’t be autistic because she had a boyfriend. Another had to look up in a book what asperger’s was.

    I myself can corroborate this lack of understanding – when I asked my GP to be referred for an autism diagnosis three years ago my doctor spent ten minutes talking about something called aspergerllosis. This was after he’d waffled on telling me about the time his sons had been on Countdown and met

    Carol Vorderman, showing me the relevant photos. Just useless. If my parents hadn’t had to fork out over £300 for a private diagnosis beforehand, I highly doubt I’d have got a formal autism diagnosis. And I have the advantage of being white and male.

    GPs and the entire medical profession have a helluva lot to answer for. This is proven by how in the NHS

    guidance to handling people with autism, there were no provisions for women’s differing needs. This interview with Monica Blakemore, founder of Autism Women Matter highlights further problems with an overall lack of understanding of autism and how “It's a sort of double discrimination: being female, and being disabled.”

    Further evidence of a brutal ignorance of women with autism comes from Laura - currently a student at a

    Russell Group university (her name has been amended for this article at her request) who was diagnosed with asperger’s syndrome aged eight. She was lucky her diagnosis was fairly quick - her mother was ‘pushy’. She had a hard time at primary school “I've always had very strong interests for certain lengths of time. At that point it was animals and I wanted to read about animals. We had to keep a reading diary and note what we read. After noticing my lack of variety, she banned me from reading them. Not that she could stop me but I was such a slow reader that I would then be accused of having nothing in my reading diary. I got so scared of reading that I physically couldn't read anything more complex than say, Animal Ark for years.”

    Parties? “I spent a lot of time helping the adults or collecting the sparkly paper from confetti cannons.”

    And playtimes? “Playtime was always the worst. At first it was okay. It was a time that I could spend alone, talking to the trees or playing ‘ball on the wall’ but that was time that I could get away. Then the teachers got involved. It was hell. I was first of all forced to join games I had no interest in with people who had no interest in me. The teachers also banned "ball on the wall". It was like an outdoor prison.”

    Things got better for Laura at secondary school, as she learnt to act more neurotypically, plus simply the

    teachers and fellow pupils were nicer and more understanding. But her experiences show how ignorance, not just of girls with autism but of autism generally, is still a scourge on society In TV, film and literature too, there is a bias towards male characters. I decided to go on to Wikipedia and count, of the fictional characters they said were Autistic, how many were male and how many were female. In the odd case when a male and a female character received equal billing, I gave both genders a point each.

    These were the results:

    Films - Male – 43   Female – 17

    Books – Male – 20  Female – 5

    TV – Male 21 -  Female - 9

    Obviously that research isn’t perfect – it’s Wikipedia for god’s sake. As a random sample of autism in the

    media though, it’s not a bad test. Overall, you get 84 male characters and 31 female – better than the 4:1

    ratio usually perpetrated about which gender has autism, but still with enough male characters that the

    stereotypes of autism that are spread to the watching or reading public will be overwhelmingly male

    ones.Females being better than males at masking their symptoms also has a dangerous tendency to lead to secondary disorders, which means that a possible autism diagnosis gets forgotten. 

    For example, anorexia is a disorder that is heavily linked with autism. According to Autism Agony Aunt and

    author Kate E. Reynolds, twenty to thirty percent of anorexic patients are perfectionists and exhibit rigid

    modes of thinking and behaviour, symptoms which ally themselves with autism. And when a diagnosis

    of anorexia is made, all the eggs tend to be thrown into that particular basket and an autism diagnosis is left by the wayside. Plus, as Reynolds says, “Anorexia offers girls with ASD (Autism Spectrum Disorder) what they perceive to be a positive outcome because lack of nutrition prevents menstruation and

    physical development.”

    It’s not just anorexia that is either mis-diagnosed or merely a secondary disorder emanating from

    autism. Depression, schizophrenia and other conditions are often diagnosed, when the real prize, that of an autism diagnosis, never arrives. It’s the autism equivalent of kissing your sister – you kissed a girl, but yeah, it’s your sister.

    There is also the school of thought that autism in itself is a male disorder. Simon Baron-Cohen,

    cousin of Sacha, is one of Britain’s most renowned autism experts and over a decade ago now came up with the Extreme Male Brain theory. He was the brainchild behind a series of tests that suggests that males score higher at systemizing, females score higher at empathizing, which according to him proves that autism, with, it’s apparently low empathetic tendencies, is an inherently male disorder, hence the ‘extreme male brain’ title. And this of course would explain why so many more males are diagnosed with autism.

    There are lots of criticisms of this theory. As Reynolds says “Terming the thesis as the 'extreme male

    brain' introduces gender into the issue when adhering to a description of signs and behaviours might have been more appropriate”.

    Also the theory doesn’t appear to take into consideration sociological influences. Boys and girls are treated differently from the day they were born so it’s hardly surprising if, for example, a one year old boy will spend more time at a car going round than a girl would at the same age. Cars are seen as being for boys, not for girls, and even at that age it’s not surprising if that message permeated to them. This article from Baron-Cohen in 2003, listing stereotypical hobbies for men and women as ‘anecdotal evidence’ I think bears out a general lack of consideration for sociological factors.

    Plus, the theory intimates that people with autism lack empathy. I profoundly disagree with this. It’s not a

    matter of lacking empathy, it’s a matter of understanding. Here’s a personal example of that lack of emotional understanding rather than a lack of empathy. When 9/11 happened, I was eight years old. I saw on the news that thousands of people has died, but I didn’t really know what dying meant and was mildly annoyed that CBBC had been replaced by footage of crying people with the same replay of a plane flying into a building. I simply didn’t understand what a terrible event it was.

    Three weeks later, my granddad died. I was devastated. I remember crying in class a month after he passed away. My granddad dying made me realise what death was, its effect on people, and I was just as upset asanyone else would be if their beloved granddad had passed on. To say that those with autism have lower levels of empathy is wrong and also dangerous for how those with autism are regarded by the wider world.

    The theory may not be in itself sexist, but it probably doesn’t help the plight of women with autism if their

    disorder is seen, rightly or wrongly as a male disorder. What do autism and a Yorkie Bar have in

    common?

    They’re not for girls.

    So what can be done to improve matters? The consensus is that earlier diagnoses are imperative. In Reynolds words “All research shows that an earlier diagnosis of ASD, followed by appropriate interventions, will optimise the person’s life chances.” 

    Povey states the issue is one of understanding. She says that “We need to improve understanding of autism in every sector of society so that the unique difficulties women face will be recognised and more will face a diagnosis.”

    Steps are indeed being taken to fulfil these wishes. The NAS has been involved with Autism in Pink, a project looking into the experiences of women with the goal of developing new approaches to support and education. Dr Judith Gould, who works at the Lorna Wing Centre for Autism is amending the questions asked of girls during the diagnosis process. Plus the Lorna Wing Centre has seen an increase in women seeking diagnosis in recent years.

    You wonder though whether the answer to this particular conundrum lies not in tackling autism, but in tackling structural sexism. Men still dictate autism’s agendas and the way it is diagnosed and treated is based around the whims of males. Laura agrees, saying “We live in a society made out of gender roles/stereotypes and social norms and the diagnosis of autism is no different.”

    A big effort is needed so that more females are diagnosed. More research, more studies and perhaps most of all, a concerted effort to reach out to women and change the male biases that, under the surface, still dominate the world of autism.

    Over Christmas, my good friend @JonnyGabriel lost his brother. Suicide is the biggest killer of males between the

    ages of 20-45 and it is often because men are afraid to talk about their problems. If you have any spare change,

    please donate to the Campaign Against Living Miserably (CALM) at the link below so that people out there won’t

    endure the pain my mate has endured. 

     https://www.justgiving.com/Roger-Sharples/

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Kate E Reynolds - blogging

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