Breaking the Bias against Neurodivergent Women - International Women's Day 2022
Table of Contents
Let's #BreakTheBias against ND women
The Importance of a Good Mirror
Before I was a shadow of my being.
The rest of me was hidden, for safety.
I internalised the rejecting reflection of others
and that created even more fear.
I never had a good mirror, until now.
A good mirror does not impose
the reflections of others.
It helps you to see yourself clearly.
It celebrates your being
in all its forms of expression
and, in doing so,
it allows you to be.
As a child and as a woman, I experienced discrimination, intimidation and bullying. In my working life, far more was expected of me than of men with similar qualifications and work experience. I have worked twice as hard to get little or no credit for my work.
But, for me, further injustices were not knowing that I was neurodivergent (until age 50) and that somewhere out there, I had a tribe – others like me, who have an incredible way of seeing and being in the world and multiple challenges.
My best friend used to say, if you cannot see it, you cannot be it. I neither knew nor heard narratives about other autistic or neurodivergent women. I never had a good mirror and, at age 51, I am only beginning to find my tribe.
May we proudly share who we are and own and celebrate our individual neurodivergent voices so that others can discover and be their wonderful neurodivergent selves and find their truest paths in life.
I am proud to be an autistic, dyspraxic and neurodivergent woman and day by day, I continue to seek my truest path in life.
If you want to change the lives of neurodivergent women for the better, be a good mirror. — Alice
New Parents and the Lack of Support
I am a recently formally identified autistic woman with officially identified autistic kids. I wanted to talk about one aspect of being an autistic mother that I rarely see discussed, but when it is, a lot of other neurodivergent mothers, parents and caregivers seem to relate to it.
When my kids were babies and toddlers, I had no idea I or they were autistic and otherwise neurodivergent. I would bring them to baby groups and then toddler groups. Looking back at that time, I can see how much I struggled at those groups, and so did my children. The noise of multiple people talking at once, of babies crying and toddlers and older children playing loudly. Struggling to make small talk, never knowing the right thing to say so saying nothing. Many groups are held in people’s houses, so there is nowhere quiet to retreat to for a break. Or large echoey community or church halls so the sound vibrates around the space.
At a time when my sensory sensitivities were heightened due to broken sleep and having a small child in physical contact with me most of the day and night, I often didn’t have the necessary spoons to socialise. At the same time, it is hard to meet new people outside of these groups. And we are told our babies and toddlers need to socialise in order to learn the social skills we have felt we have lacked most of our lives. How will they make friends if we don’t meet other children?? We know how lonely childhood can be all too well.
I am very grateful my eldest is very strong-willed and opinionated and even at age two was a great self-advocate. She made sure I knew when she hated a particular type of group so strongly that I learned it was better to avoid them.
Many autistic and otherwise neurodivergent people struggle when they become parents. We can’t implement our coping strategies as well because we have an unpredictable little person in our lives. We can’t spend the evening or weekends decompressing. Our executive function energy is used up on the many small tasks that come with having a tiny person to take care of. Many of us have neurodivergent kids who are overwhelmed by the world and want to be held a lot or not at all, who require long naps or don’t sleep. Some find other children unpredictable and a little scary so need a lot of reassurance while at the very groups that we hope will give us a small break. It is no wonder many of us realise that we might be neurodivergent after we have children.
I am very grateful that by the time I had my third child I found good online supports so I could get advice from other parents without the need to go to in-person groups. I wish there were more accessible groups for those neurodivergent people who find larger or noisy groups overwhelming. — Anna
They Still Don't See Me As Autistic
I’ve only just received a diagnosis as an adult, and I had to pay a lot for it. People don’t expect that a woman who is able to wear nice clothes and makeup can be autistic. I’ve found that ever since I got my diagnosis and started telling people, they still don’t see me as autistic. They’re surprised when I actually display traits and they still get angry at me over not understanding certain social interactions and relationships. They expect me to be able to do things. They don’t see me in the same way as they see my male autistic friends, who have allowances made for them and are generally liked. — D.
Break the Gender Bias in Medicine
The Myth of Female Autism/ADHD
Growing up, I didn’t know I was a girl until puberty hit me. Suddenly, I was supposed to follow a strict dress code, show interest in things I found tedious, and play three-dimensional social chess. I was too outspoken and too quiet, too good and too annoying, a disruptive teacher’s pet. I was comically clumsy and couldn’t wrap my head around shaving, makeup, clothes, and what boy band to obsess over. In short: I was weird. So I was bullied relentlessly. I was labelled ‘not a real girl’ and people told others I didn’t count as a woman – while I was standing right next to them.
So I turned the insults into my identity.
I became a ‘not like other girls’ girl.
Arrogance was my armour.
A fragile teenage ego is the ideal breeding ground for internalised misogyny. Boys were easier to hang out with anyway, and most of my self-worth depended on their approval. They were more direct and didn’t have such complex social rules – no cliques, triangulation, backstabbing.
It took me until the age of 30 to discover that I was Autistic, ADHD, dyspraxic. Ever since I was a teen, my ‘special interest’ was people and communication. I learnt from books and TV. I observed, studied, analysed people’s behaviours and became pretty fluent in speaking Neurotypical, even though I would still speak with a foreign Neurodivergent accent. I turned all my unfiltered running commentary on life into jokes. Toppling taboos is more acceptable if it’s done in an entertaining way. People liked to keep me around, as their personal freak show.
I don’t know if I ever masked my neurotype. I masked my mental health, my migraines, my constant aches, my sensory overload, but not who I was, at least not for long. I usually speak before I think, so it would be hard to do so anyway. And yet, I still flew under the radar. 30 years of feeling like an alien, trying to call home, and nobody picked up on my signals.
Was it because I am a woman? I don’t believe in gendering Autism and ADHD. There is no such thing as female and male autism or ADHD. I was a dinosaur-obsessed kid that ran around the house until 4 am and lectured anybody who didn’t want to listen about the various moons of Jupiter – and yet I was missed. A lot of women mask more than me to fit in, but not all do. Either way, they are missed. I don’t think the problem is an undetected female variety of autism/ADHD. Cementing gender stereotypes isn’t progressive, it just boxes us in, smaller packaging, same content.
A major reason why we are (dis)missed is that diagnostic criteria for both Autism and ADHD are based on behaviours observed in a narrow group of people. Instead, we need to focus on the experience of a wide variety of people, on the way we perceive and relate to the world, not just on how we behave in it. Two people might have very similar neurotypes, but they develop completely different coping mechanisms, depending on factors like gender, but also character, early childhood experiences, upbringing, culture, ethnicity, social class, mental health, support networks, etc. A lot of us feel the pressure to overcompensate for our struggles, only to be deemed ‘high-functioning’ and denied support later on.
I believe the problem is bias against women in all areas of life, particularly healthcare, education, and the media. Women and girls are less likely to be taken seriously. We are taught to accommodate, not to be accommodated. We are less likely to take up space and inconvenience adults with our struggles. We are often the ‘quiet, good girl’, read: the traumatised, anxious girl who has to act like an adult to keep the family from falling apart. Media representation of Autism/ADHD is still dominated by white boys and men, even though it is slowly improving. And even as women who do ‘act up’, we are less likely to be seen and heard for who we are. Our neurological differences are dismissed as a personal failure to be a proper woman. We are often diagnosed with mental health conditions and personality disorders instead. This is true for neurotypes and medical conditions like Ehlers-Danlos Syndrome alike.
I only grew into my womanhood after I discovered I was neurodivergent. There is no one right way to be feminine. I do not need to ‘do womaning’ the neurotypical way.
Today I am proud to call myself a woman.
I’m proud of my sisters, past and present, cis and trans, neurotypical and neurodivergent. “You are not like other girls” isn’t a compliment to me. It’s an insult to other girls. We need to stop bullying and putting each other down. We need to unite in our fight against systemic oppression, medical discrimination, gender-based violence, rigid gender roles and stereotypes, inequality at home, school, work. We all need to come together and break the bias against women and gender minorities. — Joana
The Immeasurable Cost of Masking
The theme of this year’s international women’s day is Break the Bias and I think that it’s one that will resonate with many people in many marginalised communities. The neurodivergent community is no exception, and unfortunately, it is still a much misunderstood and stigmatised community.
A recognised response to this stigma is the concept of masking, or camouflaging, within our community. Sometimes the mask can be a useful tool, a coping mechanism and a way to fade into the background so that you can quietly regulate – a kind of disassociation as a means of ‘fitting in’ to a world that can be overwhelming and chaotic.
However, there is a definite downside to maintaining this mask. Spending all your time suppressing your body’s sensory overwhelm, not being able to naturally regulate (stim) and watching how you’re interacting. Spending hours or days replaying that interaction to see where you went wrong, then replaying it again. Scripting conversations, not letting the façade slip, it’s all exhausting. Deep down to the bones exhausting. It’s one of the reasons a lot of neurodivergent people suffer from fatigue. Wenn B. Lawson calls it ‘adaptive morphing’ as a trauma response to a threat – much like freeze, fight, flight and fawn, done from the necessity to protect oneself, not to deceive.
It can result in a loss of a sense of self and many late-identified autistic people and otherwise neurodivergent folk talk of this aspect of finding out later in life – after the initial relief of “oh, I’m not a broken neurotypical” there comes a “but who am I” moment. And this is harder to contemplate and sometimes overcome.
I would hope that by ‘Breaking the Bias’ against neurodivergence and beginning to recognise the many different presentations and experiences that exist, the need for masking within our society becomes less and neurodivergent women are free to live their full and fulfilling lives as part of a thriving neuro-affirmative society. — Jonks
Breaking the Stigma around Diagnosis
Bullied, Patronised, and Told I'm Lazy
Hi there, I decided to share my own experiences of being neurodivergent and the many ways I have been treated differently as a result. These are probably the main ways that I have been treated differently:
- Bullying pretty much the whole way through school and in various workplaces. Always feeling left on the outside of groups and not feeling like I was wanted or welcome.
- Told I “don’t look like I have ADHD” (the same way I’m told I don’t “look” gay).
- Patronised by doctors and told that it’s “only anxiety” and that I just need to change my mindset.
- Told I’m just lazy and need to pull myself together.
- Several abusive relationships or friendships.
- Always feeling a sense of loneliness in life, a feeling of being unwelcome if I join groups. if I try to engage with some people, I’m looked at like I have two heads.
In a nutshell, these have been my experiences but I know I will probably relate to the experiences of others as well. — Mandy
Double Standards for Autistic Girls
Excerpt from Nessy’s Blog AutisticNess:
The biggest differences revolve around societal rules and expectations for boys and girls, men and women and which also differ between cultures. One of the major diagnostic criteria for autism traits is deficits (differences) in social communication and interaction. Social norms are largely dictated by the societies we live in and will influence 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.
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 ways considered unacceptable by the ‘girls in charge’.
In addition, girls are acutely aware of these societal expectations from an early age and are quick to mask any differences and camouflage themselves effectively. Girls and women seem to have a greater need and desire to ‘fit in’ or conform to expectations – not just in society, but also in the extremely complex and confusing world of girls and women, where the hierarchy is different to that of boys. This is especially true when we are growing up and intensifies around our teenage years. Perhaps it is because we feel the societal pressure to fit in more acutely than boys and men, but whatever the complex reasons surrounding these differences, we seem to be experts in hiding our traits and this is the main reason we are so easily missed.
In early childhood, girls’ autistic traits often appear similar to those of boys, or they are wrongly attributed to ‘typical developmental differences between girls and boys’. Another major autism diagnostic criteria describes ‘restricted interests’ and signs of autism in girls are often overlooked in this respect.
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.
It is thought that this type of behaviour helps to develop skills that girls need in their social worlds. For example, in her doll’s world, a girl can act out and practise scenes relating to real life. By immersing herself in the world of a celebrity or particular friend or adult, she can ‘study’ neurotypical behaviour, and this forms a sturdy base from which to observe and imitate their facial expressions, the way they talk and move, their fashion and their style. In other words, these girls are already learning precious ways of socialising with others.
In an older schoolgirl, the skills she has 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. She can use her skills of mimicry and camouflage and often does it so well that family and teachers see nothing out of the ordinary at all. On a deeper level, however, the girl is only developing superficial relationships because her brain is different, and it is therefore much more difficult to develop those meaningful and natural relationships that are so important to her. 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.
Another common sign of autism that is overlooked in girls is a discrepancy between behaviour at school and at home. Teachers often 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. She cannot mask any longer and as a result, her parents and siblings get the full wrath of her pent-up frustration. 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 the difference in social skills.
As adults, women are expected to be highly social and flexible – able to juggle careers, homes, social lives, children and families. Autistic women have to work extra hard to fit in and comply with these social expectations. 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. Autistic women’s learned skills of human behaviour help us to become excellent actresses, therapists, coaches and teachers, but by this point in our lives, identifying our autism will have become even more difficult as we are adept at hiding our traits so well.
All this means that from the outside, our autistic traits are often less observable even if we are assessed for autism. Unless the assessor is knowledgeable about these differences, they will not be considered. In addition, women have become so used to masking that we often aren’t even aware that we are doing it. If we develop unhealthy adaptive mechanisms to hide our autistic traits, they can be further entangled amidst psychiatric illnesses such as eating disorders or obsessive-compulsive disorder and professionals rarely look for the autistic wood between the trees.
But the story doesn’t end here. Much more research is being done – and needs to be done – to unravel these differences so that autistic girls are not missed and not allowed to continue developing unhealthy and harmful coping strategies. — Nessy
I Never Saw it Coming (CW: Rape)
If you have been affected by sexual violence, please contact https://www.rapecrisishelp.ie/. You are not at fault. You are not alone. You deserve help.
I never saw it coming
I misread all the signs
I never saw the danger
I believed all of the lies
I didn’t know he could do that
I didn’t know he would
I trusted him.
I trusted him!
I looked up to him
I loved him! More than I should.
It was the first time I said no.
It was the first time I refused.
I didn’t feel comfortable
I didn’t want to,
It wasn’t good enough…
What I said didn’t matter
What I wanted didn’t matter
How I felt didn’t matter
My safety didn’t matter
He ripped me apart again and again
Body and soul
No please no…
A whimper was the bravest thing I could do.
When he was finished I couldn’t move
With his words… He decided to cut me down even further
He need not have bothered
I never felt so low, I never felt less.
Dirty, broken, filthy
Damaged used… Abused.
I didn’t have the words
I didn’t know how to say it
I didn’t want to believe it
And I didn’t want anyone to know
So I kept it secret.
(P.F. R. 2022.)
This poem was written several years after I was raped by a young man I was in a short-lived and intense relationship with. Looking back, I have since realized that my difficulties in being able to pick up and read behavior, especially that of someone manipulative, contributed to me being vulnerable. Along with my naivety at the time. Along with being a woman, on my own with a man who did not see me as having any value. Only as a body he could punish abuse, belittle, and take his frustrations out on.
This was a major trauma in my life and has had a lasting effect. Thankfully, he did not stay in my life and he did not get the opportunity to hurt me again… (Note: The man responsible has spent time in prison.)
For years I kept it to myself because I didn’t want anyone to know how disgusting, less than, and unworthy of love I felt and thought I was.
I lived in denial while simultaneously emotionally hating myself. Over the years I learned that it was not my fault.
Eventually, I shared my secret with safe people and to my surprise, I was not judged. They did not recoil in disgust away from me. They treated me with compassion, kindness, and understanding and this gave me the strength to go and get counseling.
This was one of the best things I have ever done.
Taking care of me with regard to this experience is an ongoing process. Over time I have been learning to accept, care for, and love myself. I have survived and I have come out the other side.
I now know that I deserve to be happy, and I deserve to be loved.
Also the people I love in my life and the person I am raising for whom I am responsible, who is vulnerable in their own way, need and deserve both my love and my strength, so I work on my resilience which includes discovering my joy and making it a part of my life. Again, it is a process and a journey. This chapter in my story is not unique and does not wholly define me as a person.
Sadly, many experience similar and worse. It can happen to men, women, and children, whether you are neurodivergent or not, have a difference, difficulty, or disability or not. But I can tell you from personal experience, and given the understanding and knowledge I have gained over the last few years, that women who are neurodivergent, who are autistic, are at risk of being targeted, used, abused, and seriously hurt by those who would use the woman’s lack of awareness and limited skills to their advantage. Many people are not and have not been as lucky as I have been.
If unfortunately you or someone you know has been abused in any form, be it physical, sexual, verbal, emotional abuse, and/ or control, please contact the police and get help as soon as you can. And whether you are neurodivergent or not, but especially if you are, please educate yourself on what abuse is and what it looks like.
I will sign off now wishing all women everywhere a wonderful International Women’s Day and remember: You are stronger, more capable, and more able than you might think.
We are all deserving of love, understanding, compassion, and respect. I want you to know that I have gone on to do things in my life that I am extremely proud of and I experience happiness and laugh a lot with friends and family.
Remember, always be kind. You never know what someone is going through. And it has more power than you realize.
With kindness and love.
If you have been affected by sexual violence, please contact https://www.rapecrisishelp.ie/.
Will they Assume a Lack of Capacity?
I’m a mother, wife, researcher, and lecturer. I was diagnosed as autistic in my mid-30s. I can see now how much it was a part of all of my experiences and almost every aspect of my life. Knowing myself, understanding why certain things affect me, making some small adjustments to accommodate myself, it has been incredible, and so freeing. On a personal level, discovering I’m autistic has been life-changing.
Professionally it’s a completely different story. I am one of the 15% of autistic adults who are neither unemployed nor underemployed. I feel like I am supposed to be grateful, but I’m not. 85% makes my blood boil, it’s not okay. Our society needs to change. If these figures don’t prove bias, what will?
And the bias terrifies me. Will my employers think less of me if they find out and give me less opportunities or fail to renew my contracts? Would my teaching, communications and reactions be judged differently? What about my child’s schools, or doctor? Should they know? Will they assume a lack of capacity if I tell them? The same worries kick in when I consider telling friends and family. How much damage would coming out do? When, if ever, do I tell my little boy?
The biases are so prevalent, from our portrayals on TV to the slightly raised ‘speaking to a child style’ voices that appear when people who know your diagnosis speak to you, to the ones we have internalised ourselves before diagnosis. We are not broken but we need to #BreakTheBias or we won’t really be free. — Sally Anne
The Double-Edged Sword of Masking
Because I am a late-diagnosed woman who at 40 was diagnosed as autistic, my own psychiatrist doesn’t believe my diagnosis because I “speak too well”. My ability to mask, which has been a survival necessity, is impeding my ability to feel supported by and receive adequate mental health medical advice from a medical professional. — Shona
Discrimination against Autistic Mothers
The most discrimination I have experienced in regards to my diagnosed autism has been with TUSLA. I had a social worker demand to know if I have Asperger’s “because it’s better than other autism in relation to me being able to be a mother”. Despite psychiatry telling them that communication should be face-to-face and followed up in writing and should absolutely not be on the phone, TUSLA insist on phoning me and upsetting me and then claiming I’m being rude/non-cooperative. — T.
Fighting for Systemic Change
As an Autistic mental health professional, I bear witness to the pain and suffering caused by the multitude of bias and prejudice our people experience day-in, day-out of our lives.
This is why our focus must shift from blaming the person’s anxiety, depression or supposed need for resilience onto true systemic change and a human rights, trauma-informed approach for all marginalised peoples.
Tara O’Donnell-Killen, founder Thriving Autistic
... But I'll Hang On
My name is Xen and I was diagnosed with ADHD in my late teen years.
I grew up in a very emotionally distant environment. While my father wasn‘t present, my mother was someone who never understood my emotions very well and never seemed to show any from all I can remember. The first time she ever considered my feelings or the first time that I felt heard, was when I was so depressed that I couldn‘t eat or leave my room at the age of 12. It was a bunch of feelings, but especially always feeling like an outcast, feeling as if I‘m wrong no matter what I do, all coming together and crushing me. Never succeeding at anything, not at school, not at hobbies. In fact, I couldn‘t keep up with all the interests I had with the lack of energy that came with being mentally ill.
Getting my diagnosis was like having a burden lifted but going through heartbreak. I hated myself for it, feeling as if there was even more wrong with me than I thought. Feeling like I could never be a feminine woman (I always struggled with my femininity at a young age, being perceived as tomboyish or masculine/androgynous). For half a year after getting diagnosed, I couldn’t tell anyone, a lot of shame came with the diagnosis. Either people wouldn’t understand, or they’d always see me as this “one girl with ADHD”.
Even after I told my closest friends there was not a lot of understanding at all. This would always put me down. So I started putting on the act. I’d force myself to get up early and do my hair properly, try to keep my room clean and organised, wear colourful clothes and try to show more emotion through my voice and face.
A fitting word for when this whole castle broke down would be “insanity”. I’d break down, shut myself in and laze around. It stressed me and sucked the life out of me. But I didn’t want people to see me as this lazy being. The girl with messy hair, who always forgets to bring her books, who’s always zoned out, in some other world.
This self-hatred still affects me to this day, I need constant reminders to let myself know that I am worthy, and I am still learning. Learning to live with my ADHD and all the things that come with it can be difficult but I’ll hang on. — Xen
So what's next?
Thank you so much to everyone for sharing, reading, and watching our stories.
Please help us share our experience with decision-makers in politics, education, communities, and healthcare, as well as friends, family, and members of the general public. We need your help to amplify our voices. We all need to unite to #BreakTheBias against Neurodivergent Women.
Would you like to share your story? Get in touch on social media or send us an email.
As an Autistic ADHDer, Jo likes to come up with a million ideas but sometimes struggles to keep track of the two dozen tabs that are open in her mind at all times. She co-founded Neuro Pride as a space for Neurodivergent adults to come together and thrive – to celebrate ND culture and community.