Autistic and thriving, William is one of the lucky ones

The list of things William Pierce loves includes soccer and school. He does not enjoy queuing, traffic jams or going to the supermarket. Loud music can stress him out. He used to love going to Tayto Park (now rebranded Emerald Park), but then “I got angry,” he says.

“Do you remember what annoyed you?” his Dad, Phil Pierce, asks.

“The music was quite bad. They should be able to turn it off for some people and have one day without playing music.”

William, who is 12, also loves the cinema, but not sitting still for an hour and a half. “I wouldn’t be so happy. It would kind of get me agitated and annoyed.” So he prefers going to autism-friendly screenings when everything is calmer and quieter, and you can move around.

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William is autistic. He doesn’t particularly mind if you say he “is autistic” or “has autism”; however many neuro-divergent people prefer what is described as identity-first language, explains the charity AsIAm, because “they see being Autistic as a core and essential part of their identity”.

William was one of the lucky ones. He is thriving in an autism class in a mainstream school, having been formally diagnosed at nine through the National Educational Psychological Service (Neps). The fact that a diagnosis is essential to accessing supports and waiting lists to get one are too long is something you hear again and again when you talk to parents.

In William’s case, the signs were there earlier. “When he was four, before he started school, he drew out a whole plan of his day in pictures, “ says Phil. “So he knew every step that was going on. His memory is phenomenal. I’m not keen on the stereotype of the Rain Man – it’s not how it is. But William could do the Qwerty keyboard with his little letter pads from memory on the floor at two. That brightness isn’t an autistic trait, it’s William’s trait, but he used it to mask and adapt.”

William learned to “mask” – or cover up his differences to help him fit in to our neurotypical society – at school all day, but when he came home he would have “complete meltdowns, tantrums over nothing. He’d been holding it in all day”. Environments like play centres and PE were overwhelming. He would act out, behaviour that was sometimes perceived by other adults as him being difficult or challenging. Afterwards, he would feel “deeply embarrassed, really ashamed”. Clara*, another parent, points out that autism is often hidden, and an overwhelmed child can be seen as a misbehaving child.

William always loved soccer, but his natural competitiveness, along with the cold and the noise, meant playing the sport was challenging

—  Phil Pierce

AsIAm carried out a survey on attitudes to autism last year. The charity’s chief executive Adam Harris points out that 44 per cent of people did not agree with the statement that “autistic children should not be disciplined if they become stressed or overwhelmed”. What those people are saying is that a child who is so overwhelmed they can’t communicate should be treated according to “the same policy to deal with students who smoke behind the sheds during the school day. We are still punishing people for being autistic.”

William always loved soccer, but his natural competitiveness, along with the cold and the noise, meant playing the sport was challenging, Phil says, until they discovered Football For All, an inclusive soccer programme. Now he is part of a team at East Meath United. Phil is one of the coaches. If someone on one of his Football For All or Gaelic For All teams has a bad day, they just write it off as a bad day, and there’s a fresh start the following week.

What would a world that was more welcoming to autistic people look like? For William, some very slight adjustments – less loud music in public spaces; more services like the airport’s Fast Track; better sensory spaces at sports stadiums; being able to get up and walk around when he needs a movement break; more opportunities to participate in sport inclusively – would make his experience of navigating the world much more positive.

“Often the changes that we’re talking about might seem relatively small but they have a huge impact,” says Harris. Visual guides which help autistic people also help people with dementia or literacy issues. Less loud music and bright lights might make shopping a better experience for everyone. The pandemic normalised the idea of wearing more comfortable clothing to work.

**

According to the National Council for Special Education estimates, about 1.55 per cent of the school population is autistic. More adults are being diagnosed. The prevalence of autism appears to have increased in recent years, but most experts believe this is down to better understanding and diagnosis. Major tech companies in Silicon Valley have prioritised hiring people who are neurodivergent, recognising the strengths in different ways of thinking.

And yet it remains poorly understood, shrouded in those Rain Man stereotypes. “We’re at something of a crossroads. There’s definitely significantly increased awareness in Ireland” of autism, says Harris. “Most people in Ireland know somebody who is autistic”, which is very different from 10 or 15 years ago. “But there is a huge gap between awareness and understanding, and awareness and acceptance. The reality is we’re moving far too slowly.”

He cites the statistics: more than half of autistic people say they were bullied in school. Eighty-five per cent are unemployed or underemployed. “We know that autistic adults who don’t have an intellectual disability are nine times more likely to die by suicide.”

He likens it to an iceberg. The bit you can see are the practical issues or the fact that an autistic person might struggle at school. Unseen beneath the surface are “much larger attitudinal and environmental barriers”. One of AsIAm’s initiatives has been to produce an Autism ID card, to help bridge the gap between awareness and support.

Dr Elizabeth Collins, a clinical psychologist who offers autism assessment and pre-assessment consultation to both children and adults at CSK Psychology, has noticed a huge shift in the past three to four years in the language and understanding of autism – away from very medicalised, negative terminology about “deficits and diagnosis” towards a “much more strengths-based approach. It’s seen much more as a difference now, and that’s very positive.” At heart, “autism is differences in social communication”, although assessment looks at a range of criteria.

If they have been managing in what we call the neurotypical world, they mask a lot, but it’s a huge cost to their emotional wellbeing

—  Dr Elizabeth Collins

There is a rise at her practice in adult assessment generally, primarily the parents of children who are autistic and recognise similar traits in themselves, she says. “If they have been managing in what we call the neurotypical world, they mask a lot, but it’s a huge cost to their emotional wellbeing.”

When you speak to autistic people and their parents, you learn that while there is a huge spectrum of experiences, the majority become adept at researching and advocating for themselves. The long waiting lists for the diagnosis on which services depend is one well-understood issue. Less often talked about are the bits beneath the surface of the iceberg – the unique beauty and complexity of navigating the world as an autistic person.

**

The increased visibility of people with autism has been a double-edged sword for Clara*, the mother of a nine-year-old autistic boy, Johnny. On the one hand, it means there’s more awareness and hopefully more acceptance. On the other, she is sometimes left feeling alienated by the accounts of people who are diagnosed in adulthood, especially when their lives feel far removed from her son’s. Johnny is not aware of his autism diagnosis, so she prefers not to use their real names, although she is very open about the challenges in her daily life. “What’s life like with Johnny?” she says. “You have to be ready to go 10 rounds with Mike Tyson from the minute he gets up to the minute he goes to bed.”

He takes people very much at face value and he makes strangers’ lives better. He talks to all people

—  Clara

His biggest issues are to do with sensory processing and planning. The sensory overload meant baths were unbearable for him. Family mealtimes would lead to angry and sometimes violent outbursts directed at his siblings. He once broke a bone in Clara’s foot after getting distressed when he was told he couldn’t wear a new pair of shoes. Mornings at home would be a pitched battle. He could decide to take all his clothes off on the way home from school, as if he was stripping off the impact of the day, but “then in school, he was like the gentlest, kindest boy” whose teachers described how he touched everyone’s lives in a positive way. “He takes people very much at face value and he makes strangers’ lives better. He talks to all people. He’ll go up to a homeless person or an older person in a shop and ask them questions about themselves, show an interest in their lives.”

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During some of his darkest times – especially during lockdowns, when life was really difficult for Johnny – Clara felt her own emotions shut down. She has had prolonged periods where she experienced suicidal ideation. “He tore me and his room apart one night after coming out of the bath, then stopped, slumped and said, ‘I feel so sad Mummy, and I don’t know why’. All your own anger and fury and fear disappear in that one moment. Your child coming to you crying out for help to make sense of it all. And of course, you don’t have the answers, but you don’t give up trying.”

Having her son diagnosed at four “allowed us access to essential supports and services he needed, even if he has had to wait for them. For this I am grateful. Otherwise, I hate that he has a label – once you label me you negate me.”

In the last six months, there have been glimmers of light and she can start to see a more hopeful future for him. Johnny has been getting extra help from a family member with his homework, which makes him feel more confident and accepted at school, he joined a Football for All team and discovered a video game which has given him something he’s really good at. He’s beginning to verbalise his frustrations; he can now describe to his mother how the swimming pool is overwhelming for him because he can’t hear what’s being said due to the ambient noise, in a way that he couldn’t previously.

In my bleakest moments I have thought nothing is working to help us help him exist in our world

—  Clara

In all of the challenges she and Johnny have navigated together, Clara has discovered an amazing community of support and resources within herself she didn’t know she had. “Every person we have come into contact with who works in this area and in education has had a large positive impact on Johnny’s life and on our family life. [But] progress is achingly slow. Two steps forward, one step back. In my bleakest moments I have thought ‘nothing is working’ to help us help him exist in our world. But he is amazing. He goes between Bruce Banner and the Incredible Hulk 50 times in the one day.”

As a result of loving Johnny, “we’ve all grown. I’m immensely proud of my husband and my other children. And Johnny; he’s really my life’s work, there’s nothing like a hug from him.”

**

Autism and sensory consultant and assistant psychologist Jessica K Doyle, who is the co-author of a soon to be published book, The Adult Autism Assessment Handbook, says: “It is almost like autistic people are in a permanent state of mindfulness, and they are aware of a lot more of the uncertainty that’s in the world. Which is beautiful and powerful in certain contexts, or when hyper-focused on the details of our passions, but can be more tricky in overloading, stimulus-intense environments, where there is excess uncertainty.”

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She has made a video essay entitled When I grow up I want to be, which vividly describes her experience of growing up autistic. In it, she explains the strain of masking – flicking between “the real me” and “the acceptable face that took control” for the outside world. She called her mask “fake Jess”, who “presented as lovely and polite and calm and agreeable ... Very worryingly, most people seemed to like fake Jess better than me”.

From the age of 11, Jessica K Doyle began experiencing suicidal ideation, and tried for the first time to end her own life when she was 14, because she was so afraid of “fake Jess growing up and taking over my life”. This wasn’t about self-loathing. “I always had a very strong sense of self on the inside, but it was confusing to me that the world was saying this isn’t okay,” she says.

I have carved out a space in the world where I can be me, where I can be real, where there is no mask

—  Jessica K Doyle

At 17, she was admitted to adult mental health services, “as a half-adult, half-child”, and spent weeks stuck in a ward. Despite her initial elation after she finally got a diagnosis, there was little understanding of autism in the wider community, and “nothing really changed. I got reams of A4 paper on ADHD and dyspraxia, and very little on autism. There was no post-diagnostic support.”

It was only after a lot of intensive research into autism herself that she arrived at a place in her 30s where “I have carved out a space in the world where I can be me, where I can be real, where there is no mask. I love who I am, now I can explore and figure out adaptation to the world so that I can thrive and develop as authentic, autistic me.”

But she thinks that if, growing up, “I had known more about me, and how I was different and the name for that difference, and if the world had been set up for the diversity of humans that exist” she might even “have loved school, because I love learning. But there were too many barriers.”

**

Not all of those barriers, myths and misinformation about autism have been dismantled. At the offices of AsIAm, three people gather to talk about society’s attitude. They are Adrian Carroll, policy officer; Zarah Doyle, training manager, and Amanda McGuinness, who runs the blog Little Puddins and the YouTube channel the Unfiltered Autistic.

If there were two things Carroll never wants to hear in the context of autism again, it is the words “is ‘a victim of’ or ‘suffers from’ autism” because it is, he says, such negative, stigmatising language. The other is the presumption “autistic people are good at science or good at maths ... Autistic people and the autism community as a whole isn’t a homogenous group. There’s a huge diversity of experiences”, from people who only discover they are autistic in adulthood to those who are non-speakers (see panel).

McGuinness is the parent of four children, three of whom are also autistic. It was only through observing her own children and researching autism that she realised she was also autistic. After she wrote about it in a local newspaper, McGuinness found herself bumping headfirst into the stigma and misinformation that surrounds autism. One woman approached her husband “and she said, ‘Oh, I heard, your wife is mentally unwell’”. On another occasion, someone came up to her in a coffee shop, “and got really close to my face and gave me a thumbs up, speaking really loudly and really slowly”. Their intentions were good, says McGuinness, but it shows the level of misunderstanding about autism that exists.

What would a more inclusive society look like? “Giving every individual with autism the same chance as everyone else,” says McGuinness simply. She doesn’t see being autistic as a label or a diagnosis. “It is my identity. It is every single part of myself. It’s pervasive in my interactions and who I am. I wake up autistic, I fall asleep autistic.”

As the parent of a 17-year-old autistic son, Luke, Zarah Doyle wishes people spoke more about the “joy in parenting an autistic child, so you don’t only hear the negative narrative”. She understands that parents are “so fatigued by fighting a system and a society that’s not built for them. But I think the joy really needs to be sung a bit more. The little things are the big things. Every achievement, every interaction is just the best. It’s magic.”

*Where indicated, names have been changed

A showing and discussion with Jessica K Doyle of ‘When I grow up I want to be’ will take place online, on Wednesday February 22nd at AsIAm.ie.

• If you have been affected by anything in this article, help is available from AsIAm. If you would prefer to speak: Call 0818 234 234, Monday – Thursday 10-3pm Instant Messaging is available: Monday – Thursday 10-3pm at asiam.ie or email support@asiam.ie. The Samaritans can be contacted free at any time from any phone on 116 123, even a mobile without credit, or email jo@samaritans.ie.