‘They just don’t understand why she is different to them’
INSIDE STORY: Observing the confused reactions of some children when encountering her daughter inspired Ballyjamesduff mother of three NOELEEN SMITH to pen a book to help young readers get a better grasp of autism spectrum disorder. Here she tells DAMIAN MCCARNEY about the fear of parents to discuss autism with children, what stimming means and her book out this week Y'Know That Kid?
Noeleen Smith is on a mission: to help create a more understanding climate for her daughter and others with Autism Spectrum Disorder (ASD) in Ireland.
“When we are out and about,” begins Noeleen Smith, “I notice that children sometimes feel a little awkward around Aoibhinn or look at her curiously when she’s wearing her noise defending headphones. They are not being mean, they just don’t understand why she is different to them.”
Seven year old Aoibhinn, the “baby of the family” is clearly doted on by Noeleen, husband Carl, and siblings Kyla (17) and Ríordan (eight).
“She’s a great wee girl,” says Noeleen, relaying Aoibhin’s love of her teddies and playing make believe. “She has a great imagination, she loves writing stories - well she gets me to write them, she tells me what to draw and what to write.”
Aoibhinn was diagnosed with Autism Spectrum Disorder when she was two, prompting Noeleen to give up her job in insurance and be a stay-at-home mum.
“She can speak, but not as clearly as typical kids her age. Her social skills aren’t great, but listen, sure she’s great – she’s the boss of the house. She can tell you what she wants!”
Noeleen puts herself in the shoes of those other children who sometimes meet an unexpected response when interacting with Aoibhinn.
“Of course, they look at her and they see she’s about the same age as them or their peers, but she can’t talk as well or communicate the same - and you can’t expect them not to notice.”
Noeleen suspects that, if children turn to their parents for guidance, they may not be equipped to explain either.
“For parents the world has gone so politically correct now, they don’t know what to say. They’re afraid to say ‘special’, they’re afraid to say ‘different’ and autism is a complex subject anyway, so I think parents are a bit lost on how to explain it.
“So I decided to write this book just to teach kids about autism and what exactly it is.”
Noeleen’s book is called Y’Know That Kid? and hits the shelves, both real and online, this week.
“It’s just being a mammy and trying to do your best for your child - wanting them to be happy and wanting the world to be a better place for them.
“I see Aoibhinn, I see what a wonderful child she is. I see the potential in her. I want the world to keep up. I want it to be a safe place where she can reach her potential. So, if I have to write a book to try to get that message across, then that’s what I’m going to do.”
The children’s book addresses the differences children may detect in children diagnosed with ASD.
“I wanted to get to the point. I didn’t want to sugar coat it, because I didn’t want it to be so vague that kids might miss the message.
“I know autism isn’t the most interesting subject for a child, so it’s short, it’s fun, but it’s an informative book.”
‘Stimming’ is a key behaviour children might notice as very different, but when explained, it’s very easy to relate to.
“It’s like, if you are nervous, you might bite your finger nails or, if you’re excited, you might jump up and down; you’re self regulating your body.
“That’s why you might see a child with autism pacing and over and back. When Aoibhin is excited, she just runs over and back, over and back and it’s just her self regulating. You might see them swirling their hands or humming or standing on their tippy-toes, and that’s what stimming is.”
Every parent knows how crucial the images in a child’s book are. Noeleen worked with her London-based publishers, Olympia Publishing, to ensure the illustrations were as accurate as they are engaging.
“It did take a long time to get it the way I wanted,” she says of the to-ing and fro-ing over draft pictures.
“There would be a typical child looking at a child with autism and they would be looking at each other - but that’s not the way it sometimes happens. The child with autism could be looking away, so it did take a while to get it the way I wanted it to be and I am delighted with it now.”
Just because Aoibhinn has limited social skills it doesn’t mean she doesn’t crave friendship.
“She’d like kids to be near her,” explains Noeleen. “She’s just not great at playing with them, but if they played near her, she’d be delighted, she’d be stimming – she’d be running over and back and humming, and have a smile on her face.
“One-on-one she can handle it, in a controlled environment - if there was somebody there helping her to take turns - she’d manage, but just spontaneously a child coming up and wanting to play, she would find that difficult.
“It’s just about awareness and to teach kids, that’s the way she is and that she still appreciates friendships. She still wants friendships, but just, not to run up, but even to do it more subtly, to come up one at a time and say ‘Aoibhinn would you like to play?’ quietly. It’s just knowing her ways - she would love that. She does love kids and she talks about kids at home all the time,” says Noeleen.
Aoibhinn is one of six children attending a temporary ASD in St Clare’s, while a brand new unit is currently under construction at the Ballyjamesduff national school. It could open as soon as this September.
Aoibhinn was due back in school last Monday, finally bringing an end to the worst aspect of Lockdown. She has experienced “highs and lows” during this period.
“Aoibhinn relies very very heavily on her daily schedule, she needs to know exactly what the plan is for the day and, if she doesn’t know, she gets very anxious.
“At night she will say, ‘On Thursday we will...’ And she waits for me to explain exactly what we are going to be doing today.
“I’ll have to say, ‘We will get up, we will have our breakfast, we will do our school work, then we will go for a walk and have our lunch... and have cookies and milk and go to bed.
“And then she’ll say, ‘On Friday we will...’ says Noeleen with a laugh. “You could keep going, she really needs that schedule so she doesn’t feel anxious and it’s been very challenging to try and keep her busy - there’s only so many times you can you can do the Nuns’ Walk here in Ballyduff or climb Loughcrew, or go to the forest in Virginia – as lovely and beautiful as they are.
“But that’s the down side, she is very happy to be at home because Aoibhinn is very sensitive to noise and sounds and she wears her noise defendant headphones a lot of the time when she’s out. But when she’s at home, she doesn’t have to worry about noise or things in the outside world that might scare her, so she’s definitely more settled and happier at home.
“But it’s not good for her in the long run. She has to get back to normal eventually and she needs to learn how to cope with situations rather than being hid away at home all the time.”
Noeleen marks special birthdays or landmarks in the lives of her siblings and nephews and nieces, with whimsical rhymes, earning her the reputation as the “little poet” of her family, but this is her first attempt at penning a book.
Has she plans for future books? Could this be the start of something?
“I don’t know,” she laughs nervously. “I don’t know, we’ll have to wait and see how this one goes. If I feel like there’s a need for it. I just really felt like there was a need for this book. So down the line we’ll see what happens. If I get that urge again, you never know.”
Heartened by the increasing number of ASD units attached to national schools across Ireland, Noeleen hopes her book will find a home in all mainstream classrooms and will encourage all children to have a better understanding of autism and ultimately nurture friendships with children with autism.
“Even though it is a child’s book, I think everybody will get something out of it because autism is a very complicated subject. No two children with autism have the same things that they struggle with or that they are really good at,” says Noeleen who has dedicated the book to her “beautiful, amazing” daughter and also all their “wonderful friends” at Cavan Autism Parents Support (CAPS).
How has Aoibhinn responded to the prospect of the book?
“She won’t really understand it until she sees it. If you ask her, ‘What’s mammy’s book about?’
“‘Special boys and girls like Aoibhinn,’ she says, so I can’t wait for her to actually see it properly,” says Noeleen.