In terms of Autism diagnosis there is a clear gender bias. Various studies suggest that the ratio of Autistic males to females can be as high as 16:1. However, we believe this could be far higher. So why are women and girls not receiving their diagnosis, and what is the impact on these people’s lives?
There are several reasons why young girls and women are not supported in the same way as their male counterparts. The first is what is called a 'female Autism phenotype' - in other words Autistic females have characteristics which don’t fit with the “typical” Autism profile. This is due to multiple factors, such as the fact the founding medical research on children with Autistic Spectrum Conditions used a subject pool that was mainly males; such as Leo Kanner's 1943 study of a small group of Autistic children, there were four times as many boys as girls. This meaning that there was an underrepresentation of females to study how the condition manifested in them.
Young girls do not often have the hyperactivity or lack of verbal communication for example. They tend to be described as “a chatter box”. This doesn’t mean they are comfortable in social situations, it just means their anxiety manifests in talking too much to avoid any periods of silence, or they cannot gauge social queues that they may be dominating the conversation. They are also exceptionally good at what is called “masking”. This is an incredible exhausting thing for any Autistic people, especially those who are undiagnosed, and they do not even realise they are doing it.
Masking means that the Autistic person tries to imitate their “Neurotypical” counterparts based on the behaviour they have observed. This can include trying not to let their voice sound monotone, use facial expressions, trying not to talk too much and take over conversations, trying to laugh at the right times and trying not to offend other people by being “too honest”. It is like playing a part every day. Imagine an alien coming to earth and trying to blend into society. None of the human interactions come naturally to them but they spent years studying the behaviour and responses to learn how to blend in, but they are hiding their true self to avoid anyone noticing they are different. This is often how undiagnosed Autistic women feel, that they are different from others and they have no idea why, but they know they cannot be themselves and they need to fit in, so they can make their way through life.
Another reason for the lack of diagnosis for girls is that teachers do not report Autistic traits in their female students. Typical traits of Autistic girls include attention to detail, hyper focus and methodical work. This is often mistaken for just a hardworking student. In contrast if young boys have Autism it is more easily identified by the teachers by the typical perception of Autism such as outbursts, lack of concentration and fidgeting. This means a key aspect that needs developing to support young girls to get the help they need to get the correct diagnosis, is to educate teachers on how Autism manifests differently in females and how to identify this.
So how does all this impact women and young girls as they grow up? Going through life without the correct diagnosis, women are often stuck in the mental health system trying to treat the comorbid conditions such as Anxiety and Depression without understanding the root cause. They are often prescribed the wrong medication which causes further issues. They hold a lot of blame to themselves for feeling and acting differently to their peers with a feeling that “something is wrong with them”. Women with Autism are also more likely to be victims of domestic abuse and sexual assault as they are unaware they are more easily manipulated and taken advantage of. They find themselves in dangerous situations and take more risks, and struggle to know people’s true intensions.
Women already face a bias in medical assistance as a lot of their medical concerns are marked down to their weight and hormones and are medically neglected. So, when women rightly approach their doctors with a correct self-diagnosis of Autism they are often ignored, made to seem “dramatic” or “attention seeking” or told they do not fit the typical male diagnostic criteria. If a woman is lucky enough to have a GP or doctor listen to them, they are then placed on a waiting list for Autistic screening which can take up to 3 years before they are even seen. They are then asked, “what is the point?” in getting a diagnosis at this stage in life as they have “coped” all their life without one. However, if they can get to the point of getting a diagnosis, they are thrown out of the system with no support or advice due to their age and gender.
Getting a diagnosis later in life can cause a large amount of conflicting emotions. Some women have said it feels like a sense of mourning for their younger self. If only they had the support and understanding at a younger age, they are left wondering what they could have achieved differently, or they feel angry at how many years they blamed themselves for feeling “different” when they in fact had a medical condition that made them that way. Others say it is like a veil is lifted, and it helps them with a sense of identity. It helps them make sense of the events that happened in their life and why they struggled. It also gives them a sense of hopefulness that they can educate themselves on the condition and know they aren’t alone any longer.
As an undiagnosed woman of 24 I know first-hand how awful this is to live with. To grow up feeling different, struggling to make friends, being told I am being dramatic because “I was a clever child and there couldn’t be anything wrong with me”. I am now finally being listened to and put forward for screening for ASD, but the waiting list is currently at 18 months to 2 years. I have faced so many challenges in my life that could have been avoided or eased if only someone had noticed me.
Women and girls should not have to fight for equal medical treatment like this. We need to spread awareness of the female traits of Autism, so everyone can have the support they deserve. I will no longer be the invisible statistic, I have a name, a voice, and I will always advocate for women to be treated with the dignity and respect they deserve.
Women, it is time to take the mask off and embrace our true selves, and promote that love and support for our future daughters to thrive.