“We are autistic and proud”
Women are far less likely to be identified as neurodivergent than men. However, growing evidence suggests that this isn’t due to biological differences, but rather, girls “masking” and mirroring others from a young age in an effort to fit in with their peers. RSVP chats to three ladies who realised they were autistic well into adulthood
What is autism? Autism is a lifelong condition and it affects how people communicate and interact with the world – they are neurodivergent, as opposed to neurotypical. According to the World Health Organisation, roughly 1% of the world’s population is autistic.
The stereotype of autism that is presented to us in the media is usually that of a male figure, who is either a mathematical genius or a young boy who is non-verbal. While some autistic people may fit into this depiction, we must remember that autistic people are just as varied as neurotypical people – and these stereotypes often lead to autistic people missing out on identification and vital supports and therapies.
A growing body of researchers along with advocates are raising awareness of the under-identification of autistic women. Studies estimate that for every three men identified with autism, just one woman is.
The research shows that this may be due to gender role expectations, which puts greater pressure on women to conform and please other people. It is also believed that autistic girls
“mask” (learn or copy their peers’ behaviour) to avoid rejection more so than boys.
What happens when you go through life as an autistic woman, trying to fit into a neurotypical world? RSVP spoke to three Irish women to find out.
Zarah Doyle
Zarah from Dublin found out that she was autistic when she was 37. She works as a training manager for the autism charity AsIAm, but has worked in the field of autism advocacy for over 12 years.
“My son was identified at five,” she says. “I recognised a lot of myself in him. When I was filling out assessment forms, a lot of bells were ringing in my head, saying ‘this applies to me too’.” Zarah had her son at 19. “I was a young mum. I had no example of what parenting an autistic child should look like,” she admits. “Honestly, I felt like I was treading water. Thankfully, my husband was brilliant.”
She became a full-time carer to her eldest son, so she didn’t have the money or the time to seek an assessment for herself. “I was fighting for his needs, trying to get things like speech and language therapy. There was a serious social drain on me. I was always doing paperwork, chasing people, going to appointments. The idea of doing this for myself was too triggering.”
She had two more children and her sole focus was on raising them, so the idea of seeking an assessment for herself went on the back burner.
After a few years, Zarah founded SparkAbility, which involved setting up sensory-friendly social clubs for autistic children, so they could interact with their peers. “I threw myself into this work,” Zarah continues. “It was cathartic being around other autistic people.
“I studied and researched autism as much as I could. I began to self-identify with a lot of what I was reading, but there was still some self-doubt. I thought I was overthinking it.”
A few of her friends and colleagues encouraged her to go for the assessment, and when she discovered
It was cathartic being around other autistic people
that she was autistic, she finally felt able to accept herself for who she really was.
Zarah says she never knew that other people experienced life so differently to her. Her struggles in school and her difficulties in keeping friends started to make sense. “I was almost playing characters in school as I felt like my true self would never fit in.
“I was obsessed with the Friends TV show, I found the characters so funny and I would learn from their interactions, like how to use sarcasm and one-liners. I had to spend a lot of time learning social cues.”
She realised that her entire life, she had been masking [when autistic people learn, practice, and perform certain behaviours and suppress others to fit in with neurotypical people]. As a teenager, she missed a lot of school and even her mock exams because she was so burnt out and fatigued from masking.
In her 20s, she jumped between jobs, and found office politics very difficult to comprehend. “There was always a hidden undercurrent to conversations that I just didn’t get – it was so draining,” Zarah reveals.
In her adult life, she struggled with severe social anxiety and depression. “I was always people pleasing, I’d go along with changed plans even if they didn’t suit me. Inside, I was so worried, I felt like everything was crumbling. It is very tough to admit that you are struggling socially as an adult.”
Zarah’s husband was a total extrovert who thrived in social situations. “I feel like he upped my social profile and I was able to rely on him for social interactions,” she says.
Now that Zarah has been assessed, she feels more confident. “I feel like I am able to live my life in the way I need to. I was self-identifying for a few years but hearing confirmation was very validating.”
She also can recognise certain strengths she has due to her being neurodivergent. “I have hyper-focus. I can laser in on something and get it done, this was especially helpful during my Master’s degree.”
Zarah is also very sensitive to other people’s emotions. She finds that if someone else is feeling sad or upset around her, she will begin to feel the same. “It’s like hyper-empathy.”
However, Zarah does find loud environments overwhelming and she finds she needs to charge her “social battery” more than others.
Zarah also says neurotypical people should try to understand autistic people’s perspective more. “Autistic people often need to prepare for different environments and they like to know what to expect. For example, don’t just call over to their house unexpectedly – ask them first.”
Zarah prefers to communicate over email and text, like many autistic people. “I also like to rehearse my social interactions beforehand.”
She also believes that the assessment tools we have for autism are quite centred on the masculine traits.
“Autistic girls can have internal signs of autism, while boys have more external signs. A lot of the research done on autism is done on a masculine population sample.”
Zarah believes that girls are socialised to conform more than boys, resulting in women being identified later in life or not at all.
■ Visit asiam.ie to learn more about autism.
Evaleen Whelton
Evaleen discovered she was autistic nine years ago, when she was 37. “I can’t even remember what life was like before,” she says. “I’ve changed so much since.”
Evaleen, who lives outside Bandon in Co. Cork, is a speech and drama teacher by trade. She founded AUsome Training, an autistic-led and neurodiversity training company, which aims to combat the outdated stereotypes autistic people face.
She also organises the AUsome Autism Conference, which was Ireland’s firstever all autistic conference.
The Cork woman says having a word like autism to describe her life is helpful to her.
Evaleen threw herself into research about autism and neurodivergency after she was assessed. “It became my special interest,” she says. “I am really interested in studying autism outside of a medical setting.”
And she admits that being autistic often involves a “lifetime of trauma” but compassion is what is missing for a lot of people. “Usually everything about autism is framed negatively,” she says. “We need to try and frame things more neutrally. This is how we are, and the stigma arises from how other people interpret us.”
According to Evaleen, some autistic people communicate very honestly and are very open, which can be seen as naive or weak by others. “We need to stop putting value judgments on the way people act or behave.”
Autistic people’s sensitivity is similarly seen in a negative way, but this can actually be really beneficial. Evaleen continues, “We are often reduced to not liking bright lights and loud noises. But this sensitivity applies to everything – we can be deep thinkers, we can be amazing with colours and be so creative, there are many amazing autistic artists out there.”
A sense of community is very important for autistic people, but Evaleen acknowledges we are all living in a more disconnected world. “We need to expose ourselves to different
people. We need to meet people without judgement and with compassion instead.”
For those who are autistic, it can be very helpful to meet other neurodivergent people and share experiences, to feel less alone.
“This sense of community is so important for healing. Autistic people often have trauma from the way we were misunderstood. All of this can explain why we behave in certain ways in our adult life. We can be very sensitive to criticism and rejection.”
She encourages neurotypical people to engage with autistic people more, and reminds us that we have more in common with each other than we think. “Autistic people face burnout [due to masking], but neurotypical people also face burnout. Neurotypical people also stim [repeat certain physical movements or vocalisations, such as flapping hands or pacing] ... These are human things.”
She cautions against “othering” autistic people. “We are autistic and proud, but we aren’t so different,” adds Evaleen. “It’s the medical model that has othered us.”
■ To learn more about AUsome training, visit ausometraining.com.
Sharon McCarthy
Sharon McCarthy, from Carrigaline in Cork, is dealing with a lot of neurodivergency in her house. She has six children, some of whom have ADHD, dyspraxia, autism and other neurodivergencies.
“I started on this journey in 2009 as a mother,” she says.
In an effort to understand her children better, Sharon went back to college and achieved a higher diploma in disability studies. She then went on to do a Master’s degree in autism studies. Now, she is a lecturer.
“Autism became my special interest,” says Sharon. “All throughout my studies, I was ticking the boxes for autism. When I brought it up with people, I was met with ‘Oh no, you couldn’t be.’
“I am a fierce chatter. People said I was too confident or too good at making eye contact. I didn’t fit the usual stereotypes, so I parked it, but I always questioned it in my gut.”
Sharon says she had always been extremely hard on herself, and had an internal monologue berating her with fierce criticism. “I’d say things like ‘You talk too much’ or ‘Why are you such an eejit’ to myself. It was a really negative internal conversation.”
One day, she decided that if she wanted her children to have a strong sense of self-worth, she needed to start with herself. She still had a niggling feeling that she may be autistic, so she set about getting an assessment, which was completed in April 2020, a month before she turned 43. “I discovered that I have the cognitive base for autism,” continues Sharon. “I was always autopsying the conversation or event afterwards, trying to figure out what went ‘wrong’.” She also spent a lot of time thinking about what to say to make people laugh, and mirroring their behaviour. “A lot of what I was doing was based on thought and practice, rather than an implicit understanding.”
However, Sharon felt that the doctor wasn’t very affirmative of the autism identification. “I asked her to send me some documents relating to the assessment, and she basically said that [being autistic] hasn’t held me back in life so far, and it might be better if I didn’t speak about it.” This added a layer of shame for Sharon. She was very slow to tell people that she was autistic as she feared that people would view her differently.
At the end of 2021, she went for another assessment with another professional, which was a much more positive experience. “At this assessment, we discovered I have ADHD as well as autism. I felt there was no judgement.”
After this, Sharon says she stepped into her true and authentic self. “My inner critic became kinder. I realised that I have strengths that others don’t.”
For example, Sharon says she is hyper-verbal, a trait which previously troubled her. Now, she realises it has been a real asset to her role as an educator. “I say something, I revisit it, I articulate it in a different way to make it more accessible, I offer different perspectives.”
Sharon also has a dual processing skill, meaning she can process two different thoughts at the same time.
She is hoping to flip the narrative about neurodivergency. “For too long, autism and ADHD have been seen as a disorder and a deficit. I want people to start viewing them as something that carries potential.”
Sharon adds that some people with autism go on to do PHDs, while other people’s goal is to make a cup of tea independently. “That’s OK. Everyone has different strengths.”
She encourages other ADHDers and autistic people to meet up with other neurodivergent people, as they will feel a sense of community and belonging they may not have experienced before. “There is an opportunity to create friendships with people who communicate in a similar way to you.”
She adds that our perception of autism is often focused on the male presentation, and many autistic women will never be identified. “We need to broaden our understanding, beyond ‘poor eye contact’.
“People don’t seek an assessment just for the sake of it, we spend our whole lives wondering why life is so much easier for other people.”
Sharon adds that oftentimes, people will start exploring whether or not they are autistic as they have a child with a neurodivergency. “If you are questioning it, that doesn’t go away. It will bubble up. Our kids are always looking up to us. We need to be proud and pave the way for them.”
I realised that I have strengths that others don’t
Interviews by Áine Kenny