“As a child, I would have seen a speech therapist. I saw a developmental paediatrician. I saw a psychologist. I had a lot of challenges and nobody noticed autism,” says Niamh Garvey.
The 38-year-old author and former nurse from Cork was pursuing a diploma in autism studies at University College Cork when “alarm bells” first started ringing. Garvey’s young daughter had recently been diagnosed with autism and, while attempting to learn how to support her child, she began an unexpected journey of self-discovery.
“There’s no universal way to be autistic at all,” says Garvey. This is the main message she hopes to spread with her new book, Wired Our Own Way: An Anthology of Irish Autistic Voices. Garvey’s anthology features the experiences of well-known figures such as Irish footballer James McClean, and fellow writers Naoise Dolan, Nuala O’Connor and Stefanie Preissner among its 24 contributors.
“I really wanted to have a big range. I tried to get late-diagnosed people, people who were diagnosed in their childhood; we’ve a non-speaking writer – Fiachre Ryan; people who went to special schools; professors of universities.”
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Garvey herself was diagnosed four years ago, shortly after giving up her job as a nurse. She had autoimmune arthritis – “the pain just got too bad to manage a physical job”.
She remembers feeling struck by the difference in how her own autism diagnosis was delivered when compared to that of her daughter.
“When we got told she’s autistic it was kind of like they were breaking bad news to me ... Whereas when I got diagnosed, it was completely the opposite.
“The report I got was more like, ‘Congratulations, you’re autistic.’ It was like a celebration of a neurotype.”
According to recent figures from the Department of Education, one in 20 schoolchildren in Ireland now get diagnosed with autism – a threefold increase in less than a decade.
Garvey echoes the views of most experts, saying that these increasing rates are largely due to increasing awareness, as well as better diagnosis and widening of assessment boundaries.
Of her daughter’s experience, she says: “We had her referred when she was two and we waited three years for an assessment, so she was over five and had already started school by the time she got diagnosed.”
When seeking a diagnosis for herself, Garvey “had to pay privately, for a start, because there is no public diagnosis really for adults in Ireland with autism”.
Given the choice between self-identifying and seeking a full diagnosis, she says getting “a piece of paper” was affirming, allowing her to alleviate any doubts.
“I can honestly say that was the kindest thing I ever did for myself. It just completely changed my self-talk from self-criticism to self-compassion, and that’s a really common theme in this book.
“It just changes your whole attitude to yourself and you stop berating yourself for all the little mistakes or why you’re not fitting in ... It’s like you suddenly get the language that explains your life.”
Stressing the importance of neurodivergent representation in media, Garvey says her own view of autism was muddied by outdated portrayals of it and that “it was getting an understanding of the lived experience that changed the meaning of the facts and figures I’d been reading and turned it into something I could relate to”.
Growing up, Garvey was “a very academic child ... quite independent. I was very happy in my own little world, playing with my toys, and I wasn’t a kind of a child who was having big public meltdowns or anything like that”.
Probably the hardest time for me was becoming a mother, because for years I had allocated all this time to myself, to take a walk in nature, to regulate. I just naturally spent a lot of time looking after myself ... when I became a mother I sort of lost that outlet
— Niamh Garvey
While on reflection there were still several signs she was autistic, Garvey suggests that being a girl posed barriers to diagnosis – “Back then in the 80s and 90s, it was much more recognised in males than in girls, unless you were non-speaking.”
Conforming to societal expectations, known as “masking” within the autistic community, allowed Garvey to escape bullying in school, she says, but this too came at a cost. At the age of 17, she was experiencing what she now recognises as burnout.
“As a teenager, I developed a high level of masking where I was watching what other people were doing and acting it out. It probably saved me a lot of bullying but it’s exhausting because you’re not being your authentic self.
“I got married very young. I mean, I was 23. I look back now and even that was an alarm bell, because in my head you grow up, you go to college or you get your job – whichever one you’re choosing – and then you get married and have children.
“So I was following that ... I suppose I was just ticking boxes of what I thought a social expectation was. Looking back now I think it was very funny that I did that, but thankfully it worked out very well for me.”
Motherhood came with its own unique challenges, as moments where Garvey could self-regulate became sparse and routines were thrown off-kilter.
“I think probably the hardest time for me as a woman was becoming a mother, because for years I had allocated all this time to myself to, you know, take a walk in nature, to regulate, to read a lot of books and to journal. I just naturally spent a lot of time looking after myself ... when I became a mother I sort of lost that outlet,” she reflects.
“I was really burnt out and having really bad postnatal depression ... I do think it’s more common for that to hit with women, but I think it also happens to new fathers who are autistic. We really need time to indulge in our special interests because it is what we need to regulate ourselves.”
I would’ve always been more comfortable around boys. It’s quite common for autistic women to say they get on better with boys. There just isn’t the same level of social nuance
— Niamh Garvey
Getting diagnosed has since helped equip Garvey with the tools to recognise when and how she needs to create supports.
“If there are women who are questioning whether they’re autistic, especially mothers with young children ... it’s like this complete bombardment of your communication and sensory system, so understanding you’re autistic and understanding what triggers you allows you to create supports for yourself.”
[ Stefanie Preissner: ‘Motherhood is so hard, and so lonely, and so mysterious’Opens in new window ]
For Garvey, “the two most important things were to connect with other mothers and to ask for help where you can ... The best thing I did was join a breastfeeding group”.
Looking back on her college experience when studying nursing, Garvey recalls getting “a huge shock” walking into a class full of women.
“I would’ve always been more comfortable around boys. I had three brothers and no sisters and that was probably part of it, but it’s actually quite common for autistic women to say they get on better with boys. There just isn’t the same level of social nuance.”
Making friends was difficult, as was maintaining them – “I had often lost friendships and had no idea what I did wrong.
“Something I found as I was hitting my 20s was I was able to maintain the friendship in a certain structure, for example in college when I was seeing people every day, but then once the structure of college ended I didn’t know how to carry on the friendship ... I found it very hard to make friends then as an adult once all those structures fell out of place.”
According to a report by Irish charity As I Am, 85 per cent of autistic adults are unemployed or underemployed.
“That’s not down to a lack of qualification or anything like that, but it is down to workplaces being not always set up for autistic people,” says Garvey, who recalls struggling to pass interviews when she first qualified as a nurse.
“I kept failing my interviews and I couldn’t understand it because I got a first-class honours. I did really well, I had good references ... I had to go back to a lecturer I’d had in UCC and ask what I was doing wrong.
“I just had no idea what you were supposed to do in an interview, and it seemed to come naturally to everyone else in my year. They were all walking into jobs and I was completely flunking them.”
[ I received an autism diagnosis at 34 and sat quietly with it in some discomfortOpens in new window ]
Maintaining eye contact, having to “sell yourself and make yourself look really competent”, moving away from “one-liner answers” were chief among what Garvey addressed in coaching sessions, after which she secured a job.
“One of the biggest challenges for a lot of autistic people is not having social imagination – the ability to predict what’s going to happen or know what to expect in a social situation,” explains Garvey.
One way that businesses and healthcare settings can be more accommodating to neurodivergent people is by offering online booking forms, she says. Garvey identifies this as “one simple change in your surgery [which] can make all healthcare accessible to an autistic person”.
Garvey’s book was launched in Dublin this week and in Cork next week. The event in Cork on Thursday is open to the public and she has outlined step-by-step guides for what autistic people can expect to happen if they attend on her website, niamhgarvey.com.
“There’s no accommodation you can make that’s going to harm everyone else or be a problem for other people. Actually it can benefit people.”
Businesses can reap the rewards of being recommended by being neurodivergent friendly, Garvey says: “In the autistic community in Ireland, for example, parents of autistic children, we all tell each other if we have a good experience.”
Highlighting that autism is not a universal experience, Garvey is keen to dispel common misperceptions.
[ Give me a crash course in ... autism rates in IrelandOpens in new window ]
“I think a lot of people make mistakes in thinking that means it’s a linear spectrum ... I always picture it like a circular colour wheel and you might have a lot of one trait one day but the next day you might not have much of that trait at all.
“There’s areas all throughout society where it needs to improve, but I think most of that is just down to a lack of understanding of what autism is. There’s also a lot of counter arguments thrown at autistic people that there’s over-diagnosis of autism going on and people using language like mild versus severe autism, when that can be quite offensive.”
One pattern that appears among some stories shared by contributors in Wired Our Own Way, is that people felt “if you didn’t have enough problems to be diagnosed until now, then maybe you don’t need the label of autism”, says Garvey.
“People nearly can accuse you [of] making a lifestyle choice. It’s really not that all. It’s not a lifestyle choice, but getting diagnosed can change your life, it can really open up your way of thinking.”
Wired Our Way: An Anthology of Irish Autistic Voices is edited by Niamh Garvey and published by New Island
