At the National Autism Show in June 2021 there was a particular focus on understanding and recognising autism in women and girls. Historically, autism studies investigated behaviours typically seen in men and boys, which then underpinned modern day diagnostic criteria. Initially, clinicians thought that ten times as many males were affected by autism compared to females. However, more recent studies estimate that the ratio of boys to girls with autism might be closer to 3 to 1, although the true figure is still unknown. Jennifer Cook, Siena Castellon and Dr Temple Grandin talk about their experiences on the autism spectrum.
Understanding autism in women and girls
Jennifer Cook is an autism consultant, international speaker and author of the “Asperkids” series. She spoke to us about why the diagnosis of women and girls might lag behind the true picture. “We are all on the human spectrum,” said Jennifer. “And yet everyone who recognises themselves in the autism characteristics I describe thinks they are the only one. I find there are scores of people who think they are the only one, when clearly that is not true.” Jennifer was relieved by receiving her own autism diagnosis at 35 as she had always felt ‘not quite’ in everything.
Jennifer finds that spectrum minds are more associative and less process-based. Just like boys with autism, girls have special interests, but these might not fit the more stereotypical diagnostic areas such as trains and cars. Girls’ special interests can often be more mainstream, such as anime, fashion and fiction – it is more the intense degree to which girls follow them that is associated with autism.
Autistic girls don’t act out, as boys often do, as much as they act in. They direct their anger at themselves not outwards to others, which can lead to self destructive behaviours such as eating disorders. Autistic girls might struggle with female friendships, as they are based on storytelling, might interrupt out of turn and don’t naturally take other people’s point of view. However, it is not true that autistic people do not have empathy. One type of empathy is stepping into some else’s perspective without having it explained, which people with autism may not do naturally. Once the other person’s perspective is pointed out, autistic people are very empathetic.
Jennifer finds that autistic girls tend to memorise information on social rules and sexual expectations to compensate for not picking these up instinctively. They often try incredibly hard to live up to people’s expectations, leading to issues with perfectionism. “For me, biographies are a favourite way to ‘learn how to be’. We have a missing sense of self because we don’t see ourselves very clearly,” explained Jennifer.
Perfectionism and a need for artificial control can lead to eating disorders and for Jennifer these are a big red flag. Autistic women and girls are more likely to manage anxiety, depression, trauma and low self-esteem through self harming behaviours such as cutting and skin picking.
Girls might also find less detectable ways to limit or avoid eye contact, such as looking at the space between people’s eyes. They might also engage in ‘show womanship’ instead of spontaneous or one-on-one interaction, for example by pursuing careers in teaching, narrative presentation, law or performance or have a hyperfocus on one best friendship that’s all or nothing. All of these behaviours can be strong indicators of autism in women and girls but are not fullly included in the diagnostic tools available to clinicians.
Education and autism
Lisa Camilleri and Naj d’Silva from Holmewood School spoke about providing specialist schooling for girls with autism. Initially, they had very few girls in their school compared to boys but have been gradually growing their female population. Setting up a Girls Club has helped girls to find their own identity within a school with a high percentage of boys.
While they have focused on supporting their female cohort, Lisa and Naj are also very aware that gender identity and sexuality are more varied among autistic people than in the general population. Some studies show that autism is more common among people who do not identify as their assigned sex than it is in the general population, perhaps 3 to 6 times as common (Warrier V et al 2020).
Lisa and Naj see first hand that autistic girls are diagnosed later in life and have greater emotional and mental health challenges. Autistic girls rely more on the intranet for friendships and have higher social anxiety. They struggle with how to respond to and resolve social conflict and find that close intense friendships can become all consuming. Sadly, there are also higher levels of assault for autistic girls making them highly vulnerable.
Autism and the impact on self esteem
Siena Castellon is author of The Spectrum Girl’s Survival Guide. Siena was diagnosed with autism at 12 and felt she was seen as eccentric, shy and aloof. She was sensitive to noise, touch and texture and felt rejected and ostracised by other children. Autism still seems to be perceived as a mostly male condition and for girls an autism diagnosis is seen as less valid or debilitating.
“If your autism is denied by others, it might be meant as a compliment,” said Siena, “but it really isn’t. The reality is that after diagnosis, for me nothing really changed. My diagnosis did not improve my life or stop the bullying.”
Autistic girls often ‘mask’, which means hiding their autistic traits – effectively changing their personality and behaviour to appear ‘normal’ and be socially accepted. This might include observing and copying others’ behaviour, assuming the personality of someone they like or preparing and memorising a script for conversations. Girls might also suppress their stimming behaviours or special interests.
Masking can be a double-edged sword. Girls develop a repertoire of personas for different situations that they copy from TV or film but might end up losing their own identity or sense of self, damaging their confidence and self-esteem.
“Having to hide your true personality in order to be liked makes you feel worthless and unworthy,” warned Siena. “Masking can be devastating to mental health. It takes a lot of effort, self-control and concentration and sometimes leads to burnout. Autism can feel like a constant state of panic and alertness.” Siena finds it helps to recharge her social battery by taking breaks from social contact and to use alone time to calm the senses.
Siena experiences alexithyma, a personality trait which causes difficulties with identifying feelings, describing what you are feeling and identifying the differences between emotions and the physical sensations that go with them. This is exacerbated by the greater expectation on girls to be emotionally in touch with their feelings. In fact, autistic girls might express their emotions clearly but in a non-typical way, without using the expected vocal or facial expressions. Siena also has difficulties with interoception, understanding whether she feels hungry or thirsty, tired or frustrated.
“We remain unseen and undiagnosed,” said Siena. “However, we are starting to come out of the shadows so that future autistic girls will be able to reach their potential.”
Dr Temple Grandin is a world renowned autistic author, speaker, activist and Professor at Colorado State University. She spoke with Helen Ellis, Equality, Diversity and Inclusion Co-ordinator at the National Autistic Society about her own life and highly successful career as an animal behaviourist and a person with autism.
According to the National Autistic Society, around 22% of autistic adults are in employment. Dr Grandin feels that children do not experience practical activities in the way they did when she was growing up, for example working with tools. For her, this is where great job opportunities can come from. Practical approaches led to her own highly successful career in animal behaviour.
In handling social interactions at work, Dr Grandin’s tip is to treat everything on social media and email as public. It is better to take people to one side to have difficult conversations to limit confrontation. For her, workplace manners etiquettes used to be clearer and are now more difficult navigate.
As many work roles are shifting to a dependence on online communication, it remains to be seen whether this will support or hinder people with autism. With employment figures so low, there is clearly a huge seam of untapped talent in the autism community. Due to late or missing diagnoses of women and girls, there are also many females remaining undiagnosed and unsupported in both education and employment. Understanding better how autism affects females compared to males and what this means for helping them to achieve their best is an area where there is still a long way to go – but with so much to be gained.


