‘Autistic Women Matter’ aims to amplify the voices of autistic women and address the hidden issues of the diagnosis process that are unfairly endured by women and girls.  

Autism is not just a diagnosis, it makes up a huge part of a person's identity. Unfortunately, for autistic women, the current diagnostic criteria denies them of their identity too many times through acts of dismissal or misdiagnosis.  

With 700,000 people in the UK having an autism diagnosis, the ratio of men to women being diagnosed with autism stands at 3:1 which is unbalanced and unfair. 80% of girls remain undiagnosed by the age of 18 meaning that the vital support that they need is with-held from them and this is not acceptable. 

The diagnostic criteria is an issue that our campaign is keen to tackle. The current criteria is heavily based on research into the male autism phenotype. Therefore,  before a woman has even stepped into the room for a diagnosis, the criteria already stands against her.  

Mental health, such as depression, is a common misdiagnosis and 66% of autistic people experience anxiety. These mental health issues stem from struggling to navigate in a neurotypical world.  

Autistic women are left with no other option but to mask or camouflage their autistic traits to fit into a neurotypical world. This includes questioning, self doubt and never feeling like they fit in because they don’t know that they have autism. This affects their mental health and unfortunately leads to their autism diagnosis being missed entirely. 

When the correct support isn’t in place, it can be fatal. Studies have shown that autistic people are 3 times more likely to attempt or die by suicide, with women on the spectrum facing greater risk than men.  

‘Autistic Women Matter’ approached several support groups to gain an expert perspective to provide professional education within our campaign. 

A story that struck a drive for our campaign the most was the brutally emotional story of Zara Naylor. Zara is a 39-year-old Welfare Benefit Advisor and Advocate at Bolton Adult Autistic Services who had been mis-diagnosed for several years. 

Zara realised she had autism at age 22 when her step-son was diagnosed. 

“Over the past decade, I had realised I was autistic and it made me further vulnerable”, said Zara. 

She continued, “But every time an assessment for autism was broached with doctors, they told me I did not have autism because I could give eye contact, I did well at school, and because I was sociable”. 

Many women are overlooked during the diagnosis process for being high functioning as they are able to mask symptoms better than men. 

The process of Zara getting a diagnosis was far from easy.  

During her life, she had endured years of relentless abuse from several people. The situation escalated, so she had to issue protection orders to ensure her safety. 

When she was 26, Zara found herself in hospital with liver tumours. 

“Knowing I may have cancer gave me the time and space alone to evaluate my life and realise I deserved so much more”, said Zara. 

From this moment onwards, she decided to speak up about abuse and strive for an autism diagnosis to fulfill her identity after leaving hospital. 

However, she faced several misdiagnoses. 

When she visited the doctors during a time where her abuse had increased, they misdiagnosed her with Borderline Personality Disorder.  

“At one point, it nearly caused me to commit suicide”, stated Zara. 

“I was told it was all in my head”. She continued, “Going to the doctors stating abuse and my thoughts about autism diagnosis fractured my identity”. 

She claims that everything was viewed through a lens of mental health which “destroyed” her identity with every appointment. 

Although the process had been gruelling, her entrance to university provided her with hope.   

At university, Zara received treatment from an educational psychologist. They recommended an urgent autism assessment as doctors refused to refer her.  

She had now been requesting autism diagnosis for a decade. 

“My PTSD was at its worst and I experienced severe autistic burnout with severe sensory overload”, said Zara. 

She then visited the counselling service at her workplace, where her therapist referred her to Manchester Mental Health University Services. Through this, she saw a psychiatrist who noted no signs of Borderline Personality Disorder and encouraged her to seek an autism diagnosis through their system, which proved successful.  

“Officially getting a diagnosis of Autism, ADHD and PTSD was life changing”, said Zara. 

She continued, “It was a huge positive turning point and I felt no stigma or shame”. 

Zara believes the real stigma was struggling and never understanding why she had an incorrect diagnosis. This is why our call to action is so clear- sign our petition for better research into autistic women's traits! With your signatures, we can enable a fair autism diagnosis process that allows autistic women to flourish within their identity. 

Often, misdiagnosis is down to a lack of research into the female autism phenotype.

Women with autism often get misdiagnosed because they don’t fit autism stereotypes and mask symptoms.  

Freya-Raine Hall is an autism specialist at Manchester Metropolitan University. With previous work at the National Autistic Society, she has supported autistic people with getting the packages of care that they need.  

However, she also has concerns about the lack of autism diagnosis in women.  

“There just seems to be a much smaller percentage of women getting diagnosed”, said Freya. 

She continued, “There are definite gaps in the diagnosis process and making sure that everybody is aware of how to access that help is important”. 

She strongly believes that autism diagnosis should be “accessible” and “inclusive” for women so they have the same equal opportunity as men.  

In alignment with Zara’s story, Freya feels one negative experience of a diagnosis assessment could negatively impact an autistic woman. 

“You could hit the wall straight away”, stated Freya.  

She continued, “It just feels all that much more difficult to seek out the help that you need”. 

This can also have an impact on work and education. Those who remain undiagnosed during their time in education are less likely to be employed post-education.  

“Someone could be off work sick a lot because they’ve not got the right adjustments in place”, said Freya. She believes that women should be able to come into the workplace and not feel the need to “mask”. 

Despite the current criteria lacking in inclusivity, Zara is working to pave the way by encouraging women to seek diagnosis. 

Zara runs discussion groups through Bolton Adult Autistic Services which encourages women to speak up about the struggles they are facing.  

“People come in feeling they’re not good enough, not fitting in and feeling like there’s something wrong”, said Zara. 

She continued, “Reducing the stigma is a massive thing, I make sure they know they’re not alone with it”. 

By supporting our campaign, you can help autistic women receive the support that they need, tackle the stigma, and drive for further research to ensure that every woman has an equal chance of getting an autism diagnosis. 

“I hope the world’s different for my niece and nephews as they get older”, said Zara. 

With every story, every signature, and every piece of education shared, we can rebuild a better future for autistic women so that they don’t face unfair barriers. 

With your help, we can make ‘Autistic Women Matter’.