Autism in women and girls
Trigger warning: This section discusses sensitive topics which could be triggering. Please only read this section if you feel safe to do so.
If you are surprised to be reading this, then you are not alone! Traditionally seen as a male condition women and girls are autistic too and are being identified and diagnosed more than at any time in history. But why is this?
One reason 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 and for autism in women and girls it has been practically non-existent. It is not unusual for girls and women to be told that they can’t be autistic because they make eye contact or that they are too ‘able’ and ‘functioning’.
It is however, vital to talk about these differences. 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. 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.
Autistic women and girls do not necessarily present in the same way as their male counterparts. A 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.
Autism in girls is frequently misdiagnosed as ADHD (as well as several psychiatric conditions), and even when ADHD co-exists, it can hide the autism traits. This is particularly true in younger girls who may not have yet developed obvious signs of autistic social differences. Girls are more likely to be sent for psychiatric assessments or offered help with low esteem.
In addition, although autism exists within every community around the world, cultural differences and gender identity can make it more difficult to diagnose.
What are the differences?
The biggest differences revolve around societal rules and expectations for boys and girls, men and women and different cultures. Social norms are largely dictated by the societies we live in and will have an influence on those autistic traits which are deemed ‘acceptable’ or ‘normal’ for males or females. Social communication and interaction, therefore, may be differently expressed (at least outwardly) in women and girls as well as children socialised as girls or people who identify as female, and the reasons that girls are not spotted so easily is due to these biases clouding autistic women’s traits. 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 – and 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 that dissimilar to the film Mean Girls!), there is rarely any tolerance of doing anything different or behaving in any ways considered unacceptable by the ‘girls in charge’.
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 confirm 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 ‘female studies’ enable her to fit in and hang out with other girls of her age in a more natural looking way. At this age the social world of girls gets far more complicated and difficult to navigate – like being forced to be a member of a club that we do understand and do not know the rules of. We may find it easy to make friends, but cannot 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. Eating disorders and self-harm are common in undiagnosed autistic girls at this time when we are desperately looking for structure, control over our developing bodies and a sense of belonging. We know we are different, but blame ourselves. We feel that we are just weird, stupid, slow, too fat, too thin, too ugly, too pretty. We believe we are just wrong.
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 feels 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.
As we struggle on into adulthood, we are still trying desperately to be something we are not; trying desperately to work out what is wrong with us and how to fix it. Our relationships, work and home lives all suffer. Autistic women are more vulnerable to rape, abuse and manipulation. We develop dangerous and unhealthy coping mechanisms. 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 still further.
We may even suspect autism at this stage – perhaps our child has been diagnosed, or our partner recognises the traits in us. So, we raise our suspicions with our doctors and therapists, only to be dismissed and told that we can’t possibly be autistic because we are female, or that we make eye contact; we are ‘too intelligent and able’ – and therefore we can’t possibly be autistic. Instead, we are more likely to be misdiagnosed as having borderline personality disorder or bipolar disorder, which in turn lead to incorrect and dangerous treatment, unnecessary hospitalisations and harmful medications.
The role of female hormones and how they can dramatically affect autistic women
There is also one super important difference that affects autistic girls and women, but not boys or men, and that is hormone fluctuations. From the time our periods begin, we are very much affected by dramatic changes in our female hormones throughout our entire reproductive lives. For a few lucky women, these are only mildly noticeable, whilst for others they constantly rule our daily life. And of course, at the three main stages of female hormone changes – puberty, pregnancy and menopause – there are even more disruptive fluctuations than usual.
So, for autistic women, with all the sensory awareness issues on top of our preference or need for routine and stability, it stands to reason that the effect of these fluctuations may be far more influential than in non-autistic women. (This very much applies to ADHD also, especially when considering how ADHD medication and hormones interact with neurotransmitters and so on.) There can also be extra challenges around executive functioning, because managing hygiene and care around periods, pregnancy and menopause and all the other delights that come with these natural cycles, can be anything but natural and intuitive to many of us.
Pre-menstrual syndrome (PMS) is difficult for any woman to cope with, but for autistic women it can be unbearable. And a much more severe form of this, pre-menstrual dysphoric disorder (PMDD) can cause extremely distressing and sometimes unmanageable symptoms throughout every single month as the hormones, progesterone and oestrogen, surge and fall. In fact, there are sometimes only a few days a month where the woman feels ‘normal’. Furthermore, this condition can easily be mistaken for bipolar disorder, so is really something to carefully consider.
Hormone fluctuations are of course invisible and often difficult for an autistic woman to sense or make sense of, let alone adjust to constantly. And autistic woman who has difficulty with awareness of internal emotions, sensations, temperature fluctuations, pain and so on, is clearly going to struggle in this area. It will contribute to sensory overwhelm, meltdowns, mental energy and capacity and just about every other part of the autistic neurotype. It is something to bear in mind if you care for someone who is autistic, especially if they struggle to communicate their needs and feelings.
A few resources for autistic women and girls
- Guardian article discussing why women and girls are so underdiagnosed: https://www.theguardian.com/society/2018/sep/14/thousands-of-autistic-girls-and-women-going-undiagnosed-due-to-gender-bias
- Another Guardian article discussing the differences for autistic women and girls: https://www.theguardian.com/lifeandstyle/2019/apr/28/girls-women-autism-diagnosis-aspbergers
- Cynthia Kim discusses how autism is often misdiagnosed as psychiatric illness in women: https://awnnetwork.org/autistic-women-misdiagnosis-and-the-importance-of-getting-it-right
- Siobhan Ronan talks about her autism diagnosis as an adult, after going through a diagnosis of borderline personality disorder: https://themighty.com/2016/08/getting-an-autism-diagnosis-as-an-adult
- One of our members, Vanessa Hughes, talks about her late diagnosis of autism: https://medium.com/@AutisticNess
- Carrie Beckwith-Fellows gives a Ted talk about her late diagnosis of autism: https://youtu.be/cF2dhWWUyQ4
- Iris explains what women with autism want you to know: https://youtu.be/NwEH9Ui4HV8
- Maxine Share discusses the misdiagnosis of girls and women: https://bit.ly/3M4Myqx
- Actress, Daryl Hannah talks about her own late autism diagnosis: https://www.nowtolove.com.au/celebrity/celeb-news/daryl-hannah-my-battle-with-autism-9323Celebrity
- Reese Piper talks about her late diagnosis and why she wishes she had been diagnosed as a child: https://theestablishment.co/i-thought-i-was-lazy-the-invisible-day-to-day-struggle-for-autistic-women-6268515175f3
- Autistic woman and writer, Samantha Craft has several websites, blogs and books and a very useful checklist for autism signs in women and girls. Now known as Marcelle Ciampi M.Ed: https://everydayaspergers.com/tag/samantha-craft
- Autistic woman, Michelle Vines writes about autism in women:
- Asperger’s on the Inside – A Candid Interview with Author Michelle Vines – Spectrum Women
- BBC website – autistic women’s voices: https://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism
- Website with many stories written by autistic women. Also, the home of writer and artist, Michelle Riksman: https://www.autisticwomeneverywhere.com
- One of our member’s websites, with lots more information about autistic women and girls: https://www.autistic-ness.com
- Another website devoted to autistic women: https://awnnetwork.org/autistic-women-misdiagnosis-and-the-importance-of-getting-it-right
- The National Autistic Society’s website, discussing autism and gender: https://www.autism.org.uk/about/what-is/gender/stories.aspx
- Sarah Hendrickx, autistic woman and expert: Sarah Hendrickx — Hendrickx Associates (asperger-training.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 – Meet Liane (aspie.com).
- 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): https://everydayaspergers.com
- Girls and Women and Autism: What’s the difference? – Sarah Hendrickx: https://www.youtube.com/watch?v=yKzWbDPisNk&feature=youtu.be
- A short video in Dutch. Called Rain Woman: https://www.youtube.com/watch?v=fb5iSHL3vqQ&list=FLTX4CtQRN7D6oNro9NxHb2Q&index=2&t=0s
- Short autism film by the National Autistic Society: https://www.youtube.com/watch?v=d4G0HTIUBlI&list=FLTX4CtQRN7D6oNro9NxHb2Q&index=38&t=0s
- A short video of some of the positives of being autistic: https://www.youtube.com/watch?v=At4Vmo13vJE&list=FLTX4CtQRN7D6oNro9NxHb2Q&index=118
- Some women give a voice to the uniqueness of autism in females. Some of the ways we go under the diagnostic radar: https://www.youtube.com/watch?v=VzWorS8CdBM&list=FLTX4CtQRN7D6oNro9NxHb2Q&index=120
- The Chameleons: Women with Autism. Short Australian documentary: https://www.youtube.com/watch?v=VJHa9xk16Hw&list=FLTX4CtQRN7D6oNro9NxHb2Q&index=52&t=17s
There are also some excellent female autistic role models on YouTube. For example, Purple Ella, Yo Samedy Sam and many others.
- Asperger’s On the Inside by Michelle Vines – A personal memoir by an autistic woman.
- 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 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.
- Everyday Asperger’s – Life through the eyes of a female with Aspergers Memoir by Marcelle Ciampi M.Ed (formerly known as Samantha Craft).
- Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendrickx.
- Camouflage: The Hidden Lives of Autistic Women by Dr Sarah Bargiela.
- Odd Girl Out: An Autistic Woman in a Neurotypical World by Laura James – Laura’s story of being a late diagnosed autistic woman who also has hEDS.
- I am AspienWoman: The Unique Characteristics, Traits, and Gifts of Adult Females on the Autism Spectrum 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). This book also explores common strengths and challenges. Tania is the author of several more books: https://taniaannmarshall.wordpress.com.
- The Autism-Friendly Guide to Periods by Robyn Steward.
- Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s by Tracey Cohen.
- 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.
- 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.
- 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
Lots more information and resources specific to autism can be found on our resources page here.
© Vanessa Hughes, May 2022
More information about autism at www.autistic-ness.com