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Conversation article: Like many women, I didn’t know I was autistic until adulthood – how late diagnosis can hurt mental health and self image

Dr Rachel Moseley writes for The Conversation about the gender differences in autism and the impact of late, or no, diagnosis for autistic people…

Like many women, I didn’t know I was autistic until adulthood – how late diagnosis can hurt mental health and self image

Dagerotip/Shutterstock

Rachel Moseley, Bournemouth University

For many women, adult diagnoses of autism are “a light in the darkness”, an epiphany of self-understanding. My “lightbulb moment” came in my late 20s. “They thought you were autistic,” my mum mused when I told her I was embarking on an academic career in autism research.

As a child, I was painfully aware of being different. The adults and the children around me had noticed my strangeness, my inability to fit in. It turned out that autism had been suggested to my mother – but then dismissed by a child psychiatrist. I didn’t fit what was known about autism. Although socially gauche, I’d mastered eye contact and was fairly eloquent.

A few years after my mum had made that off-the-cuff comment, I was re-evaluating my life in the context of a shiny new diagnosis.

Researchers are learning more and more about the way autism differs in people of different sexes and genders. As they do so, the lights are coming on for more of us who’ve felt lost in the world.

The female face of autism

There is no one type of autistic person. The key features of autism – differences in the way we think, communicate and interact with others – show up in more diverse and subtle ways than the limited examples suggested by the diagnostic criteria. This is often true in autistic girls.


This article is part of Women’s Health Matters, a series about the health and wellbeing of women and girls around the world. From menopause to miscarriage, pleasure to pain the articles in this series will delve into the full spectrum of women’s health issues to provide valuable information, insights and resources for women of all ages.

You may be interested in:

Women still feel like they aren’t listened to when they give birth – here’s what could help change things

Birth trauma is a growing problem — experiencing it myself revealed how few people understand it

Science experiments traditionally only used male mice – here’s why that’s a problem for women’s health


While they struggle with social understanding, many autistic girls are adept mimics of the social behaviour of other people. In the way they speak and the things they talk about, they are more similar to neurotypical children than autistic boys are. This may explain why, on first impression, people tend to underestimate autistic girls’ difficulties.

In comparison to autistic boys, the conversation of autistic girls tends to be more social in nature, focusing more on the people and friendship groups around them. Their interests tend to be more social, involving fictional characters, animals or celebrities rather than non-living objects. Tellingly, they express greater longing for the friendships and relationships which often elude them.

As they grow, some girls learn scripts to use in social situations, and develop a passive way of behaving with others that focuses on making the other person feel comfortable. Many autistic girls and women engage in this kind of “social camouflaging” constantly in order to seem acceptable to others.

The subtleties of autism in girls mean that they’re diagnosed significantly later than boys. In part, this reflects lack of awareness in the professionals who typically signpost children to autism services. However, others will be passed over because diagnostic assessment tools are less sensitive to autism in girls with cognitive abilities in the normal range.

The price of being overlooked

Undiagnosed autistic people are often painfully aware of their inability to fit in and to do the things that others do easily. If no one gives you an explanation, you’re left to find one yourself.

I knew as a teenager that I must be fundamentally bad, since I was bullied and had no friends at school. Autistic people I’ve worked with in my research have similarly blamed themselves for a lifetime of struggling and being abused, pinning these things on personal failings.

Woman looking sadly out of window.
Undiagnosed autism can lead to mental health struggles.
Rocketclips, Inc./Shutterstock

Across research studies, we late-diagnosed autistics are that societal subgroup with a history of academic struggles, employment problems, mental illness and relationship breakdowns. Our self-narratives are ones of inadequacy and failure.

Research has found that autistic girls and women have poorer mental health than autistic men. So are people who are diagnosed later in life compared to those diagnosed when young. These two facts are almost certainly interrelated. Autistic children who grow up without a diagnosis are unlikely to receive appropriate support. What’s more, they’re less likely to be viewed with compassion when they struggle.

Recognition of autism in girls and women may come at a crisis point. For some, this occurs in the pubertal chaos and complex social world of adolescence, where rates of anxiety and depression climb steeply in autistic girls. For some, it happens in the world-rocking turmoil of menopause, which appears to derail the coping skills and social camouflage that undiagnosed people rely on.

For some, it never happens. Undiagnosed autistic people are believed to constitute a high number of suicide deaths.

Further challenges

Beyond diagnosis, there are other ways that autistic girls and women face greater challenges than boys and men. While women generally suffer higher rates of sexual abuse, this risk is even higher for autistic women.

Autistic women often find their difficulties are poorly understood by employers, and must also contend with gendered pressures to perform emotional labour at work – taking on the unpaid and implicit responsibility to look after the emotions of others – or face damage to their reputation.

Perhaps unsurprisingly, autistic gender disparities in stress-related illnesses and risk of suicide are stark. Despite this, autistic women still face greater barriers to accessing help.

It’s uncertain to what extent these disparities can be traced back to the fundamental fact that autism is poorly understood and under-catered for in women and people of minority sexes and genders.

What we do know is that early diagnosis seems crucial for girls to grow up with positive self-image and lower risk of mental illness.

For we lucky women who got there in the end, a discovered autistic identity can be a life-changing gift. Finding ourselves means finding each other, release from self-blame and a new sense of belonging.The Conversation

Rachel Moseley, Principle Academic in Psychology, Bournemouth University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

BU PhD student publishes in The Conversation

Congratulations the Abier Hamidi, PhD student in the Faculty of Health & Social Sciences (FHSS) whose PhD work was published in The Conversation this week (24 April) under the title Social media now trumps traditional family networks in Libya – my Facebook survey reached 446,000 women.  Her piece in The Conversation on the recruitment of female participants for a PhD study in a rather patriarchal society brings together issues of anonymity, gender, and wider social culture.

This is Abier’s PhD research is supervised by Dr. Pramod Regmi, Senior Lecturer in International Health and the Global Engagement Lead in the Department of Nursing Sciences, and Prof. Edwin van Teijlingen in the Centre for Midwifery, Maternal & Perinatal Health (CMMPH).

Congratulations!

Prof. Edwin van Teijlingen

 

New CMMPH nutrition paper published

Congratulations to FHSS authors on the publication of their paper “A Priori and a Posteriori Dietary Patterns in Women of Childbearing Age in the UK” which has been published in the scientific journal Nutrients [1].  The authors highlight that a poor diet quality is a major cause of maternal obesity. They investigated investigate a priori and a-posteriori derived dietary patterns in childbearing-aged women in the United Kingdom. An online survey assessed food intake, physical activity (PA), anthropometry and socio-demographics.  A poor diet quality was found among childbearing-aged women; notably in the younger age category, those of white ethnicity, that were more physically inactive and with a lower socioeconomic background.

The article is Open Access and freely available (click here!).

 

 

Reference:

  1. Khaled, K.; Hundley, V.; Almilaji, O.; Koeppen, M.; Tsofliou, F. (2020) A Priori and a Posteriori Dietary Patterns in Women of Childbearing Age in the UK. Nutrients 202012, 2921.

Latest CMMPH publication by Dr. Alison Taylor

Congratulations to Dr. Alison Taylor in the Centre for Midwifery,Maternal & Perinatal Health (CMMPH) whose third PhD paper  has just been accepted by the International Breastfeeding Journal.  Alison’s paper ‘Commercialisation and commodification of breastfeeding: video diaries by first-time mothers’ reminds us that many of aspects of our lives are increasingly commercialised in post-modern society.  Although breastfeeding is perhaps a late comer to this process in recent years, it too has seen significant commercialisation facilitated by social media and our obsession with celebrity culture.

This paper explores how the commercialisation and commodification of breastfeeding impacts mothers’ experiences of breastfeeding.  The paper highlights that women preparing for breastfeeding are exposed to increasing commercialisation.  When things do not go to plan, women are even more exposed to commercial solutions. The impact of online marketing strategies fuelled their need for paraphernalia so that their dependence on such items became important aspects of their parenting and breastfeeding experiences.   Dr. Taylor and her co-authors  offer new insights into how advertising influenced mothers’ need for specialist equipment and services. Observing mothers in their video diaries, provided valuable insights into their parenting styles and how this affected their breastfeeding experience.

The International Breastfeeding Journal is an Open Access journal owned by Springer.

 

References:

  1. Taylor, A.M., van Teijlingen, E., Alexander, J., Ryan, K. (2020) Commercialisation and commodification of breastfeeding: video diaries by first-time mothers, International Breastfeeding Journal (accepted).
  2. Taylor A, van Teijlingen, E.,Ryan K, Alexander J (2019) ‘Scrutinised, judged & sabotaged’: A qualitative video diary study of first-time breastfeeding mothers, Midwifery 75: 16-23.
  3. Taylor, A.M., van Teijlingen, E., Alexander, J., Ryan, K. (2019) The therapeutic role of video diaries: A qualitative study involving breastfeeding mothers, Women & Birth 32(3):276-83. https://www.sciencedirect.com/science/article/pii/S1871519218300064

Why this football tournament should be called the men’s World Cup

By Dr Jayne Caudwell, Bournemouth University

The globalisation of football means it can now be found in most parts of the world. It is celebrated as the national sport in many countries. But, we forget that “football” actually means “men’s football”. It’s the same with other popular sports – our habit is to refer to basketball and women’s basketball, cricket and women’s cricket, ice hockey and women’s ice hockey. This naming places men’s football as the dominant universal and natural norm, while women’s football becomes the “other” version.

If we want a level football playing field, then “football” should be redefined by changing our reference to tournaments, championships and leagues to “men’s football” if that is what is being played. It’s time we started referring to the men’s football World Cup, just as we refer to the women’s football World Cup.

Women and girls have long been treated as second-class citizens in the many worlds of football, including playing, officiating, governing and spectating. And indeed, in the build up to the 2018 men’s World Cup, there was much discussion about racism and homophobia – but practically none about football, gender, sexism and misogyny.

The histories of the development of football in most countries around the world show that women and girls have been denied access to pitches, equipment, coaches, training, stadiums and financial support. These material opportunities are important because they enable and validate participation – and full football citizenship.

Finland takes on Austria in a qualifier for the 2019 Women’s World Cup. EPA

Media sport pages cover men’s sport. During the football season, the coverage is dominated by stories of men’s football. Women footballers seem to not exist. The sport press obliterates them.

But women and girls are playing, officiating, spectating and commentating on the game in ever increasing numbers around the world. The England women’s team outperforms the men’s team on the European and world stage. They are currently ranked ten places higher, in second position. And yet, the gender pay gap in football is atrocious.

Ignoring sexism

While Russia, as host of the men’s football World Cup 2018, has been criticised for its poor record in dealing with homophobic and racist abuse, nothing has been said about gender-based abuse or discrimination.

Instead, ahead of the men’s World Cup, Russian MPs have been arguing over whether Russian women should or should not have sex with visiting (presumably male) football fans. The UK Foreign Office released advice on race and LGBT concerns, but there’s nothing on how sexist chanting can make men’s football a hostile environment for women. You only need to look at the sexism experienced by doctor Eva Carneiro and assistant referee Helen Byrne in the men’s premier league to see how this plays out.

What’s more, many of the concerns about homophobia and racism at the men’s World Cup stem from wider cultural issues in Russia. The same problems are evident with sexism and misogyny, yet they are curiously absent from the discussion when it comes to football. Cultural problems that affect men extend into the sporting arena, but not those that affect women.

In 2017, the Russian parliament passed legislation loosening laws on domestic violence. Russian women who support the #MeToo movement have come up against draconian assembly laws that say only one person is permitted to make a public protest.

There are no campaigns in international men’s football that aim to stop sexism, or call for anti-sexism and an end to gender-based violence.

Meanwhile, the women and girls who have fought hard to play football often encounter negative responses from the general public and from the media. Sport sociologists have found that sportswomen are trivialised, sexualised and experience symbolic annihilation – they simply don’t exist in images of the sport. A recent poster depicting Iranian fans is a prime example. Not a single female face features.

Women’s and girls’ sporting achievements are reduced as a result of ridicule. Their bodies are considered sexual objects rather than for playing sport. Former FIFA president Sepp Blatter’s comment that women should play in tighter shorts to attract more fans to the game is a classic example of this. More recently, feminist author Laura Bates challenged FIFA for describing player Alex Morgan as “easy on the eye and good looks to match” as well as the FA for tweeting about “lionesses go back to being mothers, partners and daughters” after playing in the women’s World Cup.

It’s easy to imagine that this men’s World Cup in Russia will continue to disregard gender, sexism and misogyny. And yet, sport, specifically football, has potential to incite change, and reform.

Renaming to men’s football is an easy and simple step in the direction towards equality. We may as well start with the men’s World Cup 2018.


Jayne Caudwell, Associate Professor Leisure Cultures, Bournemouth University

This article was originally published on The Conversation. Read the original article.

Autism screening tool may not pick up women with the condition

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Nikodash/Shutterstock.com

By Rachel Moseley, Bournemouth University and Julie Kirkby, Bournemouth University

Diagnosing autism is expensive and time consuming, so a screening tool is used to filter out those people who are unlikely to be diagnosed as autistic. This is all well and good, but our latest research suggests that a widely used screening tool may be biased towards diagnosing more men than women.

Earlier studies have cast doubt on the ability of one of the leading screening tools, called Autism-Spectrum Quotient, to accurately identify people with autism. Our study decided to look at another screening tool that hasn’t yet been investigated: the Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R), a widely used questionnaire for assessing autism in adults with average or above average intelligence.

We compiled the RAADS-R scores of over 200 people who had a formal diagnosis of autism. We compared scores between autistic men and autistic women on four different symptom areas: difficulties with social relationships, difficulties with language, unusual sensory experiences or motor problems, and “circumscribed interests” (a tendency to have very strong, fixed interests).

As there are known sex differences in these areas – for example, with women being better at hiding social and communicative difficulties, and men being more likely to show obvious, and hence easier to detect, circumscribed interests – we wanted to know whether RAADS-R was able to pick up these differences.




Read more:
Changing the face of autism: here come the girls


Our analysis showed that it didn’t: we found no sex differences in RAADS-R scores between autistic men and women in social relatedness, language and circumscribed interests.

A possible explanation for this result is that, since RAADS-R depends on people accurately judging and reporting their own symptoms, sex differences may only emerge when behaviour is diagnosed by an experienced clinician. Previous studies have shown that autistic people often lack insight into their own behaviour and find it difficult to report their own symptoms.

Another likely reason for finding no sex difference in autism traits is that this and most other studies only include autistic people who have received a formal diagnosis through assessment with the very tools and tests we are investigating. As diagnostic and screening tools (including RAADS-R) were developed with male samples, they are most likely to identify autistic women with the most male-like profiles.

This might explain why fewer women tend to be diagnosed. It could be, then, that the screening tests filter out all of the autistic women with more female-like autism traits, and the autistic women with more male-like traits go on to be diagnosed. Or it could be that the underlying sample is biased because the formal diagnostic tools select people with more male-like traits, and the screening tool merely reflects this underlying bias.

Our results could show that our sample didn’t represent a diverse range of autistic women, then. And this is a problem that affects all research on sex differences in autism.




Read more:
GPs urgently need training on autism


As more males than females have received a diagnosis of autism, many of the theories we have about autism are based on these diagnosed cases, and, as a result, may only apply to males. Likewise, as we base our screening tools and diagnostic tools on males who have been diagnosed, we may only pick up women who show male-like symptoms.

We could be missing the women who have very different, more female presentations of autism, but who still show the core features that are central to the diagnosis. These include problems with social interaction, communication and restricted behaviour and interests.

Because screening and diagnostic tests focus on the most common, male manifestations of these core symptoms, females tend to be overlooked. Circumscribed interests in males, for example, are more likely to be based on unusual topics, whereas girls and women may centre their interests on things like celebrities or fashion, only the intensity of the interest sets them apart from non-autistic females.

One clear difference

There was only one prominent sex difference that emerged in our study: autistic women reported more sensory differences and motor problems than autistic men. Sensory and motor symptoms are common in autism. People may be over or under sensitive to sights, sounds, touches, smells and tastes, and are often clumsy and poorly coordinated.

Some autistic people are sensitive to certain fabrics. Purino/Shutterstock.com

This self-reported finding, that women have more sensory and motor symptoms than men, needs to be investigated more thoroughly. However, it appears to be consistent with a few studies that have found that autistic women do have more sensory and motor symptoms than men.

If these types of symptoms are especially problematic for autistic women, they could be important for providing a diagnosis. Although RAADS-R measures sensory and motor symptoms, they play a very minor role in gold-standard diagnostic tests, such as the Autism Diagnostic Observation Schedule.

The importance of a diagnosis?

Efforts are now underway to develop screening tools that are better at identifying autism in females.

Diagnosis is important for autistic people for many reasons. For example, it is the only way they can access support services, such as dedicated support workers to help them with activities at home or in daily life. They might also receive financial support if they need it. (Unemployment affects most of the autistic population and may in part be due to high levels of mental illness in this group.)

Other people have spoken about how having a diagnosis has helped them understand the struggles they’ve faced in their lives – that these things weren’t their fault. And it has helped them meet other people who accept them for who they are.


Rachel Moseley, Senior Lecturer in Psychology, Bournemouth University and Julie Kirkby, Senior Lecturer in Psychology, Bournemouth University

This article was originally published on The Conversation. Read the original article.

Why suicide rates among pregnant women in Nepal are rising

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Shutterstock/By KristinaSophie

By Bibha Simkhada, Liverpool John Moores University and Edwin van Teijlingen, Bournemouth University

Huge numbers of pregnant women and new mothers are taking their own lives in Nepal as they deal with extreme poverty, natural disasters, domestic violence and oppression. Research shows suicide represents 16% of all deaths in women of reproductive age. The rate is higher than previously recorded and there has been a considerable increase over the past few years. But a new project which trained midwives about mental health issues might hold the key to turning this around.

Suicide is primarily associated with unwanted pregnancy or the feeling of being trapped in poverty or situations of sexual and physical abuse. A study of 202 pregnant women (carried out between September and December 2014) found that 91% of them experienced some kind of physical, emotional or sexual abuse – mostly at the hands of their husbands and/or mother-in-laws.

The sad fact is that almost 40% of suicides in the world occur in South-East Asia. And one in three pregnant woman and new mothers are taking their own lives in low-income countries. In Nepal, 21% of the suicides among women aged 15-49 were in girls under 18 due to violence and being powerless in their families and communities.

Pregnancy is a known trigger for mental health problems. But gender discrimination and domestic violence are making matters worse. In addition to these issues, natural disasters are also a huge contributing factor to the spiralling mental health problems of young mothers.

A woman on a collapsed building in Kathmandu after the earthquake in May, 2015. Shutterstock/Somjin Klong-ugkara

Lack of control

In Nepal, making decisions about seeking maternity care is not in the hands of the pregnant woman but usually lies with her mother-in-law or husband. When young women marry they move in with their husbands’ family and their lives are ruled by their in-laws. These women often have little say in seeking health care during pregnancy, childbirth and the postnatal period.

In many poor families, husbands migrate for work leaving their young wives with family. Nepal has a real migrant workers economy with close to 50% of Nepalis relying on financial help from relatives abroad. Mental health problems can worsen for women who have been taken away from their own families. In other cases, young women face domestic violence due to their husbands’ drinking leading to mental health issues and suicide.

There is also a lack of understanding of pregnancy and childbirth-related mental health issues and husbands and mothers-in-law often fail to support these vulnerable young women. They in turn are reluctant to seek help due to the stigma associated with mental illness.

Cultural and social norms

Cultural practices and social norms, like gender inequalities and early marriage, hinder women who have a lack of choice when it comes to their role as mothers. There is also a preference for sons rather than daughters, who are seen as an “economic burden” in many families. If a woman is expecting a daughter, especially for the second or third time, this can also trigger mental health issues.

Depression and anxiety are common and affect ten to 15 out of every 100 pregnant women in the country. Postnatal depression is often reported, but less attention is given to more common and less obvious mental health issues.

Natural disasters and midwives

Recurrent earthquakes and floods exacerbate issues of depression and helplessness as women are forced to live in temporary shelters and have the burden of increased poverty.

For many rural Nepali women, the most qualified birth attendant they can expect to look after them is the Nepali Auxiliary Nurse Midwives (ANMs). But a study found that they received little or no formal training on perinatal mental health issues. Although there have been gradual improvements in health care for women during pregnancy, mental health support is leaving many women feeling that suicide is their only option.

As part of a Tropical Health and Education Trust project, funded by DFID, around 80 ANMs were trained on perinatal mental health issues. The project used UK-based volunteers in Nepal over two years.

The training helped raise awareness of mental health well-being and improved access to mental health care for pregnant women and new mothers. This is a vital first step towards improving community-based services for pregnant women in rural Nepal. But to offer hope to more young women there needs to be a significant increase in this type of training and awareness raising.

Bibha Simkhada, Postdoctoral Researcher in School of Nursing and Allied Health, Liverpool John Moores University and Edwin van Teijlingen, Professor of Reproductive Health Research, Bournemouth University

This article was originally published on The Conversation. Read the original article.

BU Briefing – Locating the ‘third voice’: participatory film making and the everyday in rural India.

Our BU briefing papers are designed to make our research outputs accessible and easily digestible so that our research findings can quickly be applied – whether to society, culture, public policy, services, the environment or to improve quality of life. They have been created to highlight research findings and their potential impact within their field. 


This research reflects on practice-led research involving a community video project in southern India – Andhra Pradesh. Four of the women involved in this project were asked if they would use their cameras to film their everyday lives.

The aim of this paper was to build on current practice by combining participatory filmmaking with traditional observational documentary techniques and video diary interviews to locate a ‘third voice’ in order to create an engaging narrative and new perspectives on life in rural India.

Click here to read the briefing paper.


For more information about the research, contact Dr Sue Sudbury at smsudbury@bournemouth.ac.uk.
To find out how your research output could be turned into a BU Briefing, contact research@bournemouth.ac.uk.

#TalkBU presents… Still no freedom: From North Korea to being ignored

#TalkBU is a monthly lunchtime seminar on Talbot Campus, open to all students and staff at Bournemouth University and free to attend. Come along to learn, discuss and engage in a 20-30 minute presentation by an academic or guest speaker talking about their research and findings, with a Q&A to finish. 


North Korean women are routinely subject to systemic sexual violation. But for the many who successfully escape their country to also overcome hunger, the search for freedom is just as tough, as they are frequently abducted, sold and exploited by traffickers.

Dr Hyun-Joo Lim will be discussing her research on North Korean female defectors living in the UK and the systemic human rights abuse they experienced both inside and outside their homeland.

When: Tuesday 5 December at 1 – 2pm

Where: Room FG04, Fusion Building

Register here to attend

Click here to find out more about our future and previous #TalkBU events.

BU Academic holds Women’s Career Development Workshop in Tokyo

Dr Sachiko Takeda, in collaboration with colleagues from the University of Sheffield and Women and Work Research Center (Japan), has been carrying out a research project ‘Developing Women’s Careers in Japan’, funded by the British Academy and Leverhulme. As part of the research finding dissemination, Sachiko and the team recently hosted a workshop at J.P. Morgan’s head office in Tokyo; welcoming 40 attendees from industry, mainly representatives of large organisations’ CSR and diversity related activities. The venue was provided through Ms Tsui, Head of Global Philantropy, Asia Pacific at J.P. Morgan Chase, who supported the project’s purport.

Photo courtesy of Kanae Tomiyama

The project corresponds to a recent call for emergency measures to create a better work environment for women’s career development. Despite that, Japan has one of the most educated female populations in the world, women are often reported to face substantial difficulties in advancing careers at Japanese firms. Nevertheless, some women do manage to progress to senior levels, and it is the aim of the project to understand their career experience, particularly the problems they had faced and how they overcame those barriers. To achieve this aim, Sachiko conducted 25 face-to-face interviews with Japanese women who held managerial and professional roles in large enterprises.

At the workshop, the project team presented the summary of findings and made the following three suggestions to Japanese organisations: 1) organise workshops to raise awareness of male managers; 2) establish practices of women-to-women mentoring; and 3) improve work-life balance for both men and women. In the panel discussion that followed the presentation, the panellists encouraged women to propose, create and implement new systems themselves at organisations for women’s career development. At the same time, the importance of including small and medium sized organisations, which are the majority in Japan, in the movement and extinguishing prejudice against single and/or childless women was also claimed.

Photos courtesy of Kanae Tomiyama

For more information, please contact Dr Sachiko Takeda at stakeda@bournemouth.ac.uk.