Sarah, who is a BU MSc Student studying Clinical and Developmental Neuropsychology, presented research from her MSc dissertation on Friday 7th June at The BPS Division of Health Psychology Annual Conference 2024.
Supervised by Dr Emily Arden-Close, Sarah’s dissertation delved into the daily experiences of autistic individuals with hypermobile Ehlers-Danlos syndrome (hEDS). This was lived-experience research as Sarah has both conditions herself, and therefore engaging with her study participants carried huge emotional relevance and importance to her personally.
The research found that traits commonly associated with autism, such as the need for routine and structure, significantly aid in planning daily activities and managing EDS symptoms. However, participants also highlighted the psychological challenges of having to adjust meticulously planned routines due to acute pain and fatigue flare-ups. This qualitative research underscores the complexity and challenges faced by those living with both hEDS and autism.
Sarah was diagnosed with hypermobile Ehlers-Danlos syndrome (a rarely diagnosed genetic connective tissue disorder) in February 2020. This diagnosis came after fifteen years of physical symptoms which were misdiagnosed as Emotionally Unstable Personality Disorder. Sarah has an extremely rare co-condition called Median arcuate ligament syndrome (MALS) and has studied for her Masters degree on a prescription liquid-only diet, unable to eat food.
Sarah was diagnosed with autism in May 2022, after realising she is autistic thanks to the lectures on autism on her MSc course at BU!
Acknowledging the transformative impact of formal diagnosis on her life, Sarah has embraced lifestyle changes and effective self-management strategies for her hEDS and various co-morbidities.
Alongside being a student here, Sarah also works at BU as a Student Ambassador, Digitial Marketing Ambassador and a member of BU PIER (as a member of the public). Passionate about medical education and raising awareness of rare health conditions, Sarah regularly engages in public awareness, volunteering, and charity fundraising.
Influenced by her own health journey and navigating the complexities of the healthcare system, coupled with Complex PTSD from childhood trauma, Sarah has developed a keen interest in various aspects of the diagnostic journey.
In March 2024, Sarah’s art exhibition “Seeking Meaning in Diagnosis” was held in the Atrium Gallery at BU. Sarah recently won the SUBU Award in the “Outstanding Contribution to Equality” category.
As well as being a patient expert, photographer and blogger Sarah is also a keen yogi and she was featured in Hotpod Yoga’s Move with Purpose Campaign, discussing her late-autism diagnosis.
To learn more about Sarah’s inspirational diagnostic journey – visit her website.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
The French government is to call for research into autism to be listed as a priority area in Horizon 2020, the successor to the EU’s Framework programme for research. The French minister for social cohesion, presented an outline of the plan at a recent cabinet meeting and will produce a detailed set of goals by the end of this year, following a decision to make the condition France’s ‘national cause’ for 2012.
The government intends to ‘intensify’ research in biology, physiology and the social sciences to expand knowledge of autism. This is likely to include an interdisciplinary research stream supported by the National Research Agency. The plan highlights the need to reinforce the rights of citizens with autism and to increase public awareness of the condition in order to support social inclusion. If you are interested in autism research and want to get in to EU funding, now would be a great time to start building links with French researchers in this area.
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