Women & girls

Those assigned female at birth, or who identify as female

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What is autism?
 

Trigger warning:

This section discusses topics which could be triggering. Please only continue if you feel safe to do so.

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If you are surprised to be reading this, then you are not alone! Autism is traditionally seen as a male condition, but women and girls are autistic too. We are being identified and diagnosed more than at any time in history. But why is this?

Research based on young white males

 

One factor is that traditionally, autism research and diagnosis - like ADHD in fact - has centred predominantly around boys. In addition, autism has remained within the realms of psychiatry and medicine, which in turn has traditionally been dominated by male professionals. The training of general medical practitioners to spot and diagnose autism is still extremely limited, so for autism in women and girls, it has been practically non-existent.

 

It is still annoyingly common for professionals to tell women and girls that they can’t be autistic, simply because they can make eye contact, or that they are too ‘able’ and ‘functioning’. Or because they are not male!

Different presentation

A second important reason that women and girls go undiagnosed or misdiagnosed is that we do not necessarily present in the same way as our male counterparts. The majority of professionals are not trained to even be aware of autism in girls, and teachers are less likely to spot the autistic girls in their class, therefore not referring them on for assessment and support.

Misdiagnosis

Autism in girls is very often misdiagnosed as ADHD, and even when ADHD co-exists, it can hide the autism traits. This is particularly true in younger girls who may not yet have developed obvious signs of autistic social 'impairments'. Girls are more likely to be sent for psychiatric assessments or offered treatment for low self-esteem.

The same is true for adult women. We are frequently misdiagnosed, not just as ADHD, but bipolar disorder, borderline personality disorder or other psychiatric conditions. This has really dangerous consequences, as it leads to women being mistreated with drugs and therapies, which in turn, are likely to make our autistic challenges even worse. It also means that we are not being helped or supported in the ways that we actually need. 

Cultural and societal expectations

In addition, although autism exists within every community around the world, cultural differences and gender identity can make it more difficult to diagnose.

It is absolutely vital to talk about these differences, for so many reasons. As you read on, you will understand why. But not least because autistic difficulties in reading people and picking up subtle warning signs, mean that girls and women are even more vulnerable than their non-autistic counterparts. Our naturally trusting nature, naivety and tendency to miss subtle warning signs are big red flags for our safety. Whereas, if we are diagnosed at the youngest age possible, we can grow up supported and guided so that we develop healthier coping mechanisms and strategies in order to keep ourselves safe.

 

What are the differences?

Different societal expectations for different genders

 

Societal and cultural rules and expectations differ depending on the gender assigned at birth.

Social norms, being largely dictated by the societies we live in, will therefore have an influence on those autistic traits which are deemed ‘acceptable’ or ‘normal’ for different genders. Social communication and interaction, therefore, may be differently expressed (at least outwardly) in women and girls, children socialised as girls or people who identify as female. These biases inevitably cloud our traits and make us less easy to spot.

Older girls and teenagers, have a greater need to ‘fit in’ with their peers and the social rules in general tend to be more complex and complicated than those for boys.

Boys and men are often allowed to ‘get away with’ socially inappropriate behaviours – often applauded for doing so by their peers. Girls and women, on the other hand are rarely allowed the same privileges, and in the teenage girl’s world (not dissimilar to the film Mean Girls!) there is rarely any tolerance of doing anything different or behaving in any way considered unacceptable by the ‘girls in charge’.

Girls and women learn to mask and camouflage

Girls are acutely aware of these societal expectations from an early age, and are quick to mask any differences and camouflage themselves effectively. There seems to be a greater need and desire to ‘fit in’ or conform to expectations - not just in society, but also in the complex and confusing world of girls and women, where the hierarchy is different to that of boys, particularly in the teenage years.

As young girls, we may well seem to be coping with and enjoying life. But by secondary school the difficulties will have definitely set in. In early childhood, girls’ autistic traits can appear similar to those of boys or they are wrongly attributed to typical developmental differences between girls and boys.

 

For example, autistic boys may have more familiar traits, such as an intense interest in dinosaurs, cars or science, while autistic girls may have preferences around play and activities that are dismissed as stereotypical ‘girl play’, such as dolls, horses or celebrities. A girl who is totally into her world of dolls may be seen as perfectly ‘typical’ but what may not be so obvious is the intensity of her interest which goes far beyond that. She may create complex life stories for her dolls. She may spend more time socialising with them, than with her peers. They may in fact be her best friends and given half a chance, she may invent highly imaginative worlds involving them.

In an older schoolgirl, the skills she has already developed from her lifetime of ‘female studies’ enable her to fit in with, and hang out with, other girls of her age in a more natural looking way.

Our skills of mimicry and camouflage may be so good, that family and teachers see nothing out of the ordinary at all. There is often a discrepancy between behaviour at school and at home. Teachers report that the girl is a ‘model student’, while at home her parents are reporting the complete opposite.

 

Sometimes this is misinterpreted as difficulties in the home environment when in fact what is really going on is that the girl is working so hard at school to mask, fit in and behave as she is expected to, that when she gets home, she is completely exhausted and verging on meltdown. Alternatively, by the time she gets home, she has no battery reserves left to even communicate with her family, so may retreat into her own world where she feels safe and able to be herself.

Autistic girls often prefer to hang out with older children and adults, or they may be more comfortable in the company of boys, who tend to be rather more accepting and have far less challenging social rules. Spending more time with animals than humans is also a common coping mechanism to help address these differences in social skills.

As adults, women are expected to be highly social and flexible - able to juggle careers, homes, social lives, children and families. We manage this by observing, learning and copying social skills particularly well in order to be able to better blend in. We continue to mask and camouflage remarkably well, thus hiding our autistic traits and difficulties.

All this means that from the outside, our autistic traits are less observable, even if we are assessed for autism. Unless the assessor is knowledgeable about these differences, they will not be considered. Women themselves, become so used to masking that we often aren’t even aware they we are doing it. If we develop unhealthy adaptive mechanisms to hide our autistic traits, they can be further entangled amidst psychiatric illness such as eating disorders or obsessive- compulsive disorder, and professionals rarely look for the autistic wood between the neurotypical trees. 

 

But the story doesn’t end here. Much more research is being done to unravel these differences, so that autistic girls are not missed and not allowed to continue developing unhealthy and harmful coping strategies. Some autistic women have come up with really helpful lists of autistic traits and signs which are more commonly seen in girls and women, rather than the traditional lists based on boys and men. You can find links to these lists in the information section below.

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Autistic difficulties in reading people and picking up subtle warning signs, means that girls and women are even more vulnerable than their non-autistic counterparts. The earlier we are diagnosed, the better prepared we can be to keep ourselves safe and well.

 

Why is it so important to talk about these differences? 

Undiagnosed autistic girls and women are more vulnerable to the darker shadows that lurk in society. Our naturally trusting nature, naivety and tendency to miss subtle warning signs are big red flags for our safety. If we are diagnosed at the youngest age possible, we can grow up supported and guided, so that we develop healthy coping mechanisms and strategies to keep ourselves safe. When this does not happen, there can be tragic consequences.

 

As young girls, we may well be coping with, and enjoying life. But by secondary school the difficulties will have set in. At this age the social world of girls gets far more complicated and difficult to navigate. It's like being forced to be a member of a club that we don't understand, and where no one has told us the rules.

 

We may find it easy to make friends, yet not be able to understand why we can’t seem to keep them. Our hormones are playing havoc with our brains and there is so much pressure and so much to learn, both in school and outside of it. We feel misunderstood and different, and can’t find a place where we just seem to fit. 

 

It is in our late childhood and teenage years that many of us first experience depression and anxiety, as well a number of other mental health and physical health issues - often a direct result of not being aware of our autistic differences.

 

Eating disorders and self-harm are common in undiagnosed autistic girls at a time when we are desperately looking for structure, as well as control over our developing bodies and a sense of belonging. We know we are different but we blame ourselves. We feel that we are simply weird, stupid, slow, too fat, too thin, too ugly, too pretty. We believe we are just wrong.  

 

As we continue to grow, still lacking that all-important sense of our true self, we spend our entire lives feeling as if we are on the outside looking in. We are often shunned by our peers and bombarded with negative and judgemental messages from school, family, work, and in our social life and relationships. 

 

As we struggle on into adulthood, we are still trying desperately to be something we are not; trying to work out what is wrong with us and how we can fix it. Our relationships, work and home lives all suffer as a result. We are accused of being lazy, weak, neurotic or hysterical. Our risk of burn out, depression, anxiety disorders, self-harming behaviours and suicidal ideation increases further, and we develop dangerous and unhealthy coping mechanisms.  
 

We may even suspect autism at this stage - perhaps because our child has been diagnosed, or our partner recognises the traits in us. Yet, if we raise our suspicions with our doctors and therapists, we are frequently dismissed, and told that we can’t possibly be autistic because we can make eye contact. Or we are told that we are too intelligent and capable. (Whatever that actually means!)

 

Instead, we are much more likely to be misdiagnosed, and the two most common misdiagnoses for women are bipolar disorder and borderline personality disorder. It's common for psychiatrists to label us with, and treat us for, anything other than autism! This in turn leads to unnecessary hospitalisations and harmful medications. And perhaps, worst of all, we are accused of having faulty personalities.

Relationships are unsurprisingly doomed to difficulties, if we do not understand our authentic selves, on top of all the trauma and damage we have accrued throughout our lifetime. Our natural autistic naivety and social communication differences make the subtleties of flirting and intimate relationships difficult, leaving us vulnerable to abuse. 

 

This brings me one important and very worrying risk for autistic women, who have lived their lives undiagnosed. We are far more vulnerable to manipulation, rape and other forms of abuse. The benefit of an early autism diagnosis, and the necessary self-awareness that comes with it, is so very important.

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The good news however, is that this situation is changing – slowly but surely. Autistic professionals, autistic women and autistic advocates are speaking out. We are talking to each other, meeting others who think like we do and awareness around autism in women and girls, as well as across cultures, is finally growing.

 

Further information for women and girls

Helpful checklists for women and girls

These two websites are helpful for women who are wondering if they are autistic. Neither are formal assessment tools, but both are useful when used with other assessment tools.

Marcelle Ciampi M.Ed (formerly known as Samantha Craft)

Samantha states that “This list is meant as a springboard for

discussion and more awareness into the female experience with autism.” 

https://the-art-of-autism.com/females-and-aspergers-a-checklist/ 

Tania states that this list “is not a research-based formal

assessment tool. It is a screening tool based on the many females I have worked with over the years.” 

https://taniaannmarshall.wordpress.com/2013/03/26/

moving-towards-a-female-profile-the-unique-characteristics-abilities-and-

talents-of-asperwomen-adult-women-with-asperger-syndrome/ 

Articles

AutisticNess writes about growing up as an undiagnosed autistic woman (Oh! That's me!!!)

https://medium.com/@AutisticNess/my-story-as-a-late-diagnosed-autistic-woman-by-vanessa-hughes-4786063ef601

Susan Dunne writes: "I was diagnosed with autism in my 40s. I had no support, and spent a year weeping with regret for what felt like a train wreck of a life..."

https://www.theguardian.com/social-care-network/social-life-blog/2015/sep/16/autism-as-an-adult-on-the-many-days-i-spend-alone-i-forget-how-to-talk

Maxine Share discusses the misdiagnosis of girls and women:

https://themighty.com/2018/11/misdiagnosis-girls-autism-spectrum/

Celebrity Daryl Hannah talks about her own late autism diagnosis:


https://www.nowtolove.com.au/celebrity/celeb-news/daryl-hannah-my-battle-with-autism-9323

Autistic woman, Michelle Vines writes about autism in women: 

 

https://www.spectrumwomen.com/latest-news/aspergers-on-the-inside-a-candid-interview-with-author-michelle-vines/

Why many women with autism and ADHD aren't diagnosed until adulthood:

https://theconversation.com.cdn.ampproject.org/c/s/theconversation.com/amp/why-many-women-with-autism-and-adhd-arent-diagnosed-until-adulthood-and-what-to-do-if-you-think-youre-one-of-them-179970

YouTube Videos

Girls and Women and Autism: What’s the difference? - Sarah Hendrickx - 

https://youtu.be/yKzWbDPisNk

A short video in Dutch, called Rain Woman:

https://youtu.be/fb5iSHL3vqQ

Some women give a voice to the uniqueness of autism in females. Some of the ways we go under the diagnostic radar:

https://youtu.be/VzWorS8CdBM

Chameleons: Women with Autism. Short Australian documentary:

https://youtu.be/VJHa9xk16Hw​

Iris explains what women with autism want you to know.

 

https://youtu.be/NwEH9Ui4HV8

Carrie Beckwith-Fellows gives a Ted talk about her late diagnosis of autism.

https://www.youtube.com/watch?v=cF2dhWWUyQ4

Websites

Autistic Women Everywhere (AWE)

Website with many stories written by autistic women. Also, the home of writer and artist, Michelle Riksman: 

https://www.autisticwomeneverywhere.com

 

 

Autistic Women Network (AWN)

Another website devoted to autistic women:

https://awnnetwork.org/autistic-women-misdiagnosis-and-the-importance-of-getting-it-right/

 

 

The National Autistic Society (NAS)

Discussing autism and gender:

https://www.autism.org.uk/about/what-is/gender/stories.aspx

 

 

Sarah Hendrickx - Asperger Training

Sarah is an autistic woman and expert: 

https://www.asperger-training.com/sarah-hendrickx

Spectrum Women

'For women who have a different point of view'

https://www.spectrumwomen.com/contact-us/

Aspie.com

Professor Liane Holiday-Willey is an internationally-renowned author; autism educator, consultant and advocate, and keynote speaker on autism spectrum challenges and supports, females with autism, and adults with autism. 

http://www.aspie.com/presentations.html

 

 

Dr Temple Grandin

Author and speaker on both autism and animal behaviour and professor of Animal Science at Colorado State University. 

https://www.templegrandin.com

 

 

Dr Michelle Garnett

Autistic woman, clinical psychologist and writer.

https://attwoodandgarnettevents.com/

 

 

Marcelle Ciampi M.Ed (formerly known as Samantha Craft)

Autistic writer with several websites, blogs and books, as well as a useful checklist for signs of autism in women and girls:

https://everydayaspergers.com 

https://everydayaspergers.com/tag/samantha-craft/

Marcelle also has a list of Facebook support groups:

http://www.myspectrumsuite.com/autism-facebook-online-community-groups/

BBC website – autistic women’s voices:

https://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism

Other support groups on Facebook:

I do not personally have experience with any of these, but I have been advised that, late diagnosed women should be a little cautious about which groups they join, as they can be somewhat intense for late diagnosed women. Two that has been recommended to me are, Autistic Women and Living Authentically. 

Books

I've included links to The Book Depository or Amazon.co.uk, but they are available at many other places and at different prices.

Book Reviews

 

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Coming Soon Neon Light

Asperger’s On the Inside - A personal memoir by an autistic woman: by Michelle Vines (2016):

https://www.bookdepository.com/Aspergers-on-Inside-Michelle-Vines/9781938821943

Spectrum Women, Walking to the Beat of Autism.

A book of personal stories by autistic women, with personal guidance and perspectives by autistic advocates, including Liane Holliday Willey, Anita Lesko, Jeanette (Jenn) Purkis, Artemisia and Samantha Craft. Contributors cover issues including growing up, identity, diversity, parenting, independence and self-care amongst many others.

Edited by Barb Cook and Dr Michelle Garnett. 

https://www.bookdepository.com/Spectrum-Women-Barb-Cook/9781785924347

Everyday Asperger's – Life through the eyes of a female with Aspergers  Memoir by Marcelle Ciampi M.Ed (formerly known as Samantha Craft) :

https://www.bookdepository.com/Everyday-Aspergers-Samantha-Craft/9781909320574?ref=grid-view&qid=1654005233000&sr=1-1

Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendrickx:

https://www.bookdepository.com/Women-and-Girls-with-Autism-Spectrum-Disorder-Sarah-Hendrickx-Judith-Gould/9781849055475

 

Camouflage: The Hidden Lives of Autistic Women by Dr Sarah Bargiela:

https://www.bookdepository.com/Camouflage-Sarah-Bargiela-Sophie-Standing/9781785925665

 

Odd Girl Out: An Autistic Woman in a Neurotypical World by Laura James (2018) - Laura’s story of being a late diagnosed autistic woman who also has hEDS:

https://www.bookdepository.com/Odd-Girl-Out-Laura-James/9781509843824?ref=grid-view&qid=1654005359446&sr=1-1

 

 

I am AspienWoman: The Unique Characteristics, Traits, and Gifts of Adult Females on the Autism by Tania Marshall.

This book takes a unique approach by combining imagery, feelings, thoughts and words of Autistic women (and those that love and support them). It also explores common strengths and challenges.

 

The Autism-Friendly Guide to Periods by Robyn Steward:

https://www.bookdepository.com/Autism-Friendly-Guide-Periods-Robyn-Steward/9781785923241?ref=grid-view&qid=1654005474249&sr=1-1

Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s  by Tracey Cohen:

https://www.bookdepository.com/Six-Word-Lessons-on-Female-Asperger-Syndrome-Tracey-Cohen/9781933750453

  

 

The Secret Life of Rose, inside an autistic head by Rose Smitten – Eleven-year-old Rose has produced a fantastic book with a little help from her mum, who also gives her professional input separate to Rose:

https://www.amazon.co.uk/Secret-Life-Rose-Inside-Autistic/dp/B08WS2VQYB/ref=sr_1_1?crid=1502ZQ2I73UKG&keywords=secret+life+of+rose&qid=1654005653&sprefix=secret+life+of+ros%2Caps%2C81&sr=8-1

                         

Inner Riches - an Autistic Woman’s Experience of Love and Motherloss by Michelle Dorothy Riksman - Michelle tells the story of her amazingly talented, kind and loving late mother as well as a deeply moving personal insight into Michelle's heart wrenching journey of grief and loss after her mother's sudden passing, combined with the intertwined journey leading to an autism diagnosis in middle adulthood. These two events are very much connected and Michelle talks about them both articulately and honestly. 

https://www.amazon.co.uk/Inner-Riches-Autistic-Womans-Motherloss/dp/B09QNYKLQV/ref=sr_1_1?crid=1AHO12LRQQZQO&keywords=Inner+Riches+-+an+Autistic+Woman’s+Experience+of+Love+and+Motherloss+by+Michelle+Dorothy+Riksman&qid=1654005737&sprefix=inner+riches+-+an+autistic+woman+s+experience+of+love+and+motherloss+by+michelle+dorothy+riksman+%2Caps%2C77&sr=8-1

 

Temple Grandin - Many books! 

https://www.templegrandin.com/templegrandinbooks.html 

 

 

A list of books by Liane Holliday-Willey: 

https://www.amazon.co.uk/Liane-Holliday-Willey/e/B001K8EMEG?ref=sr_ntt_srch_lnk_17&qid=1573043261&sr=8-17