Although autism is predominantly diagnosed in childhood, there are an increasing number of women, like journalist Eleanor Flegg, learning that they are autistic. She talks to the experts about why this is the case, and to other women who were diagnosed as adults
I was 50 when I realised that I was autistic. All the indicators were there; it just took a while for the penny to drop. Like many autistic women, I’m so adept at masking my difference that I don’t even know I’m doing it.
In casual conversation, for example, it can take time for me to work out what to say. Sometimes this results in uncomfortable silences, so I go into conversation battle-armed with scripted comments and attention-diverting techniques. In my mind, each conversation is a like a video game. You gain points for keeping the chat going and lose points for weirding people out.
If I get stuck, I play the compliment card. Admire someone’s outfit/dog/bicycle to shift the focus and buy time to think of a suitable response (it only works when the compliment is sincere).
This exhausting process is known as camouflaging, the art of hiding in plain sight. Autistic girls, keenly aware of the need to be socially accepted, are particularly good at it.
Until recently, autism was seen as a developmental disorder and this was reflected in the negative language used to describe it.
Now, terms like ASD (autism spectrum disorder) are being replaced by neuro-affirmative language. Autism is a difference, not a disorder, and all autistic people are different.
First identified in the 1940s, autism was mainly considered as something that happened to boys. Now, most sources put the gender ratio in autism at four-to-1 (four autistic boys for each autistic girl), but these statistics may not be correct. Autism is harder to spot in girls, who present differently and tend to receive diagnoses later in life than boys.
Sometimes it’s misdiagnosed or missed entirely. Due to this diagnostic pattern, generations of autistic women have spent their whole lives under the radar. This leaves us with very few female role models and not much conversation about the female autistic experience.
But the wind is changing. This October, Irish writer Stefanie Preissner, creator of RTÉ comedy drama Can’t Cope, Won’t Cope came out as autistic, diagnosed at the age of 34. In November, English TV presenter Melanie Sykes announced she had been diagnosed as autistic at the age of 51.
She described the diagnosis as “life affirming”. In the same month, the actor Christine McGuinness, mother of three autistic children, received her own diagnosis at the age of 33.
“At least 70pc of those coming to the Adult Autism Practice for assessment are women,” says Davida Hartman, clinical psychologist and principal of the Adult Autism Practice. “A lot of those would have people say, ‘you couldn’t possibly be autistic’.”
Many autistic women, she explains, are misdiagnosed with mental health difficulties like borderline personality disorder and depression, often because they’re struggling with undiagnosed autism. Anxiety and autism go hand in hand when you live in a world that’s designed for the vast majority of the population.
Others are dissuaded from going for diagnosis by casual comments like: “Don’t label yourself” or “Don’t let that define you”.
“People mean well but what they’re reflecting is society’s negative view of autism,” Hartman says. “The benefits that come from diagnosis are huge.”
She also points out that some of the practices offering adult assessment don’t really understand current research on autism. If they’re using terms like ASD on their website, they’re unlikely to be in tune with the neurodiversity movement.
“It’s really important to know what to ask for,” she says. “Ask if they take masking or camouflaging into account during their assessment? Are they aware of autistic-led research in relation to the autistic experience?”
Another issue is the cost. In Ireland, there is no way of getting an adult autism assessment without paying for it and prices range from €850 to around €1,300. Mine is booked. It took me a while to save up for it, but for many people it’s completely out of reach.
Fiona Ferris, deputy CEO of Irish autism charity, AsIAm, would like to see public access to diagnosis. “It’s expensive,” she says. “Between 80 and 85pc of autistic adults are long-term unemployed or underemployed, so how are they going to afford that? And when you don’t have a diagnosis you won’t be able to get any disability supports from social welfare.”
She did not feel comfortable disclosing her diagnosis until after her own daughter was diagnosed, by which stage Ferris was in her mid-20s. “Something that I found really distressing was when I was trying to advocate for her I was still getting a negative response.”
Comments like, “I’m really sorry to hear that” or “She doesn’t look autistic; you wouldn’t know to look at her” revealed an underlying stigma that just didn’t fit with the way that Ferris perceived her daughter. “I could see all the positives that came along with it and the strengths that she had, because she was autistic. Autism is not a list of deficits. She just works very differently.”
Advocating for her daughter convinced Ferris to come out as autistic. “That’s when I started to disclose. I found that the response had changed because my attitude had changed. I was using autism as a way of explaining difference.”
If you feel that you might be autistic, she recommends putting yourself forward for assessment. “There’s nothing negative to come out of receiving an autism diagnosis as an adult. It can be easy to slip though the net if you haven’t had speech delay. For a lot of autistic people their speech can be very advanced for their age.” It’s also important to find a practice that’s LGBTQ+ affirmative. “We live in a world where not anyone fits into a box of man/women and boy/girl. By using those distinctions we’re gendering a condition and this is also perpetuating the misconception.”
Autistic people, she explains, are much more likely to be part of the LGBTQ+ community than neurotypical people.
In her work with AsIAm, Ferris often describes the experiences of Autistic people as the ‘travellator effect’. “You can walk along beside the travellator in an airport, but you have to walk faster. The autistic person can get to the same point as everyone else but they have to work so much harder to access their potential. I have to speak publicly a lot but I often find communication quite difficult. When I’m tired I lose my words and I forget what I’m trying to say. It’s not something that anyone else sees but the people who know me personally experience it almost on a daily basis. I speak for my living but I can’t carry on a conversation without forgetting the words!”
Elaine McGoldrick, a retired primary school teacher based in Co Cork, was about 52 when she first started thinking that she might be autistic.
She says: “As a teacher I had a special interest in autism but I never recognised myself in the descriptions I read. The biggest problem was the empathy myth. I’m extremely empathetic. I feel pain that people don’t even know they have.”
According to the stereotypical view of autism, autistic people don’t experience empathy. McGoldrick was keen to have the diagnosis because she was having issues with the misrepresentation of autism in education.
She was diagnosed in 2018 and, since then, has left primary teaching to start a doctorate in education. “With the benefit of hindsight, I realise that I was different all this time. I’ve had different struggles with mental and physical health because of the strain of trying to fake it. I spent years of my life trying to fix me. I seriously thought that I was the problem. My interior monologue would have been very damning.
“Now I know how my brain works, that has changed and my closest relationships have got stronger. The diagnosis gives you sense of who you are. It’s the commonality that you find with people, that shared sense of not belonging and of being an outsider.”
This comes with a warning. Not everyone knows how to react to an autism diagnosis. “When you come out and proudly announce that you’re autistic, people don’t know what to do with you.”
Amanda McGuinness (40) is a visual support graphic designer who lives in Co Mayo. She specialises in the design and creation of visual supports for autistic individuals including social stories, visual narratives that explain social situations to autistic and is the author of the blog Little Puddins. McGuinness realised that she was autistic long before she decided to go for assessment.
“I’d already self-identified as autistic. I’d booked appointments and cancelled them. People told me I couldn’t be autistic because I’m too academic. I met with judgement and I felt the weight of that judgement more than anyone. I didn’t want people to think that I’m not a good mother or incompetent at work. Then I thought, how can I teach my sons to be proud autistic individuals? I have four children; three of them are autistic. My middle son, Jack, is a carbon copy of me as a child. He would talk to me about the movies in his head. My thoughts are cinematic, I think in visual imagery both, static and moving, when I process information. Before I fall asleep at night, a whole reel of the day replays in my mind. I notice patterns; it’s instinctive and outside of my control. My mind lights up like a circuit board. I find verbal communications really overwhelming as I try to decipher the visual imagery that overwhelms my every thought and translate it into spoken word. My ability to speak can’t keep up with how quickly my mind processes information.”
Deciding that she didn’t want to end the year without knowing, one way or the other, McGuinness went forward with the assessment, which she sees as a formal identification, rather than a diagnosis.
“I found it transformative. It was the most empowering thing. Autism is part of who I am. I wish I’d known all my life, because then my life would have made sense. When I hear people talk about “normal”, and “normalising autistic traits” to appear like the neuromajority. But what is “normal” really but a social construct? We are each uniquely ourselves. Understanding my autistic identity means I now know where I belong in the world. It has helped me to connect with, understand and support my children at a deeper level.”
See asiam.ie, adultautism.ie, littlepuddins.ie