Autism in Women & Girls
Why we should be talking about it:
In conversations about Autism, female presentations are often an afterthought.
When disclosing their diagnosis, Autistic women & girls can be met with:
“You don’t look Autistic”,
“I know a 5-year-old boy with Autism, and you are NOTHING like him”
Or creatively:
“Well done, you cover it up so well!”
This is just one of the ways that a lack of awareness and compassion for Autistic women manifests. However, some more serious ones are:
Lower rates of diagnosis compared to male Autistics (1)
Higher rates of suicide (2)
Higher rates of mental health problems requiring hospitalisation at an earlier age (3)
Why this matters:
As an Autistic female, suffering is seen as an integral part of our experience. On the one hand, it’s the things that come with being female, like periods, childbirth/pregnancy and menopause. On the other, it’s the ones that come with being Autistic, like sensory overload, social exclusion and higher rates of chronic illness (4). These complexities are often lost in the support services on offer, with many Autistic women feeling like they don’t experience their Autism in ‘the right way’ to get support for it, and so are left behind.
Unfortunately, existing systems have a hard time identifying happy autistic children and adults, especially autistic women and girls. This makes it hard to know exactly what a thriving autistic adult female looks like, how her needs are met, and how to keep her physically and mentally well.
Why is it this way?
Women diagnosed as Autistic meet the same Autism criteria as men, but their traits can present in a way we are poor at identifying. Even if the underlying cause is part of an Autistic experience, these presentations can be brushed off.
This might be because:
Women might look like they cope socially (5)
Women and girls often learn to cover autistic behaviours and so may mask their traits that seem abnormal to others (5)
Girls often hit puberty earlier than boys and will have a unique set of challenges in their teens and pre-teens
Women are more likely to be seen as emotional if they experience distress, and therefore can be misdiagnosed with mental health concerns (2,6)
Women & girls special interests may be seen as less niche, such as fashion or reading, but they are equally intense as other special interest topics (6)
There have been some attempts to explain these differences, such as the ‘extreme male brain’ theory (1), which is highly criticised by the Autistic community. Instead, many feel a lack of research and attention on female experiences is to blame rather than ‘female autism’ requiring a different category in itself (1). Another critique is that some male (and non-binary) Autistic people also relate to Autistic women’s experiences rather than to male peers. The same may be true of Autistic women who relate more with male peers’ traits and interests.
How do we Support Autistic Women and Girls?
Early recognition can mean more aids are put in place, and traumatic situations and health declines are avoided. Some of the ways to support Autistic women and girls are:
Allow them to engage with their interests without shame or judgment (7)
There are very few things even Allistic young women are allowed to care about without being shamed, such as girl bands, make-up and theatre. The same can be said for the less feminine associated interests too, where women are ostracised from these communities for different reasons, such as science, history or gaming spaces. Ultimately, no one wins, so this advice doesn’t relate solely to autistic Girls, but it does hold more significance for them due to the intense nature of their interests.
Prepare them for puberty and the sensory and emotional changes it causes
Making sure your child feels as prepared as possible for puberty and periods can help support them through the upcoming sensory and emotional changes. Increasing predictability is very important in allowing Autistic people to regulate, so helping them develop a routine that supports these big changes can reduce stress.
Accommodations in school, such as not having your child called on without warning and making sure they are aware of who to go to for school support (7).
Being your child’s advocate through school, remembering to include their wants and needs in this process. Your child may feel lots of social pressure to fit in, especially in secondary school, so balancing this with their education needs may require lots of collaboration with them and the school to reduce avoidance and distress.
Be aware of health concerns your child may be more likely to suffer from, such as endometriosis, PCOS which cause issues with periods and symptoms throughout their menstrual cycle (4).
This might mean advocating for them at the doctor’s, as well as encouraging self-care and pain management during their periods.
Be her advocate and teach her how to be her own.
Model the advocacy you want to see your child or young adult Autistic daughter give to herself. Teach her how to stand up for her needs as she becomes an adult and encourage her to advocate for herself with your support. This improves her chances of getting her needs met independently, and boosts her confidence in having her voice heard.
It's an important one.
References:
(3)https://news.ki.se/autistic-women-have-increased-risk-of-mental-illness
(5)(https://www.nhs.uk/conditions/autism/signs/children/)
(6)https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls)
(7)https://www.autism.org.uk/advice-and-guidance/professional-practice/girls-wellbeing