This week, we're raising awareness for World Autism Awareness week. We spoke to Carley about how her daughters diagnosis of autism has changed their family's life.

Background

Isla is six and lives in Belfast with her mum, dad, and three-year-old brother Ellis. Isla is autistic and has other needs like speech and language delays and motor skill delays.

Isla’s condition

Carley explains that Isla’s condition can affect her in different ways. “With her ASD and her speech and language delays she can’t process things like a child her age would be able to. She masks a bit when she goes to school.

"She recently started back, and she’ll be masking all day, then the second she gets in the front door she’ll scream and cry because her stress levels have just been through the roof. It’s like she’s in a safe place when she gets home, so everything comes out then.”

As part of her speech and language delays, Isla struggles with processing conversations. “She’s understanding a lot more words, but now it’s her processing and repetitive words. She’s very much into playing with small figurines, but she won’t make up any dialogue, she’ll just act out a conversation that’s already been had. It will be a conversation that you weren’t even aware she heard, but she’ll be playing and reciting the whole conversation.”

“With her autism, she also has sensory issues. With cereal for example, she won’t have milk, she has to have it dry. We started going to parent workshops to help us along, as she’s the first child in our family with special needs. It’s about trying to get support where we can.”

 “We’re still getting our head around it, and it’s such a wide spectrum too. It’s forever changing. Her eating has gotten better, she will try more things, but then she’s asking for things to be dry.”

Carley thinks that awareness of Isla’s condition has a real impact on how people respond to her behaviour.

People who don’t have awareness about it don’t know how to react to her behaviour. They just think she’s acting out or she’s spoilt.

"Some people can be very judgemental, and don’t want her playing with their kids because they think she’s spoilt. When people get to know her, they understand that it’s actually her special needs."

How it affects the family

Carley adds that Isla’s behaviour can have an impact on her younger brother, Ellis. “When we try to give Isla space to process her emotions, she will try to get a reaction by being more aggressive with him, because that means she gets a reaction from us by telling her to stop.”

“She’s not doing it to be mean. Even if a situation like that happens, it will play on her mind, and she will come up to me weeks later and want to talk about it. It takes her that amount of time to process what has happened.”

“It’s hard for him because he’s only three, and he had just started a playgroup which of course closed during the lockdown. They’ve both been in the house, so it’s trying to find things that they could both do together.

"But again with her autism, she very much wants to be on her own. She’s fine with him playing beside her, but not with her. But I think he struggles because he doesn’t understand that.”

“I think he will get used to it as he gets older. There are days where she does let him in more. But as we are a two-parent household we do try to manage our time with them both. So even if she is in a meltdown, she can have her space and calm down while we do things with him.”

Carley explains that it can be challenging to make sure that both children are occupied, as “He very much wants to be on the go, and out of the house, where Isla with her anxiety heightened, doesn’t want to.”

The impact of coronavirus

Carley explains that coronavirus has impacted Isla’s anxiety, and caused her to become nervous about going outside. “We can get her outside sometimes, we’re learning how to work things to get her outside a bit more. It’s that initial fear of leaving the house.”

She’s listening to news, and if there’s something on the TV in the background she will pick up on it

"Even in the transport to and from school if there’s something on the radio about coronavirus and deaths, then she would get very fixated on death. She’s been asking about death quite a bit.”

“Isla has also been having a lot more aggressive meltdowns. She has an older cousin who brought an old games console round, because Isla’s anxiety is so bad at the moment that she won’t even leave the house, unless it’s for school.

"As a result, we’re trying to keep her occupied and engaged with the games while she’s inside to stop those meltdowns.”

Lockdown has also changed Isla’s routine drastically. Carley says “We’d put her in a gymnastic group with some others, and they were qualified in special needs, and she was used to going there.

"But then everything closed, and she can’t understand why she can’t do all of the things that she used to. She would have regular sleepovers with her cousin, and that all stopped, same for seeing family.”

“The fact that they’re able to go back to school gives her a bit more social interaction, which is good, because she doesn’t tend to interact with her brother.”

How we helped

Carley says that “Everything’s really costly, so Family Fund helped us out with loads of things.”

Isla got an iPad for her home-schooling, because we didn’t have anything at the beginning of lockdown.

"She colours and reads on it too. It can access the internet and she can download the apps that suit her."

Family Fund also helped with outdoor play equipment which is allowing Ellis to have some space to play.

“As I said, Ellis loves going outside, and of course at the moment Isla isn’t too keen on leaving the house.

"Family Fund also gave us a trampoline which means that he can go out the back and play.

"Or if she goes out to play then we can keep an eye on her and make sure that they’re both safe.”

How it’s made a difference

“Isla can use her iPad to connect with her teachers for classes and talk to her school friends too through a Seesaw app. It meant that, even during lockdown, she could see school-work and upload it for her teachers.

"Before that we were having to view and upload school work on a mobile phone, and it just wasn’t easy for her. Your phone isn’t as big as an iPad, so she couldn’t see things properly.”

“Mathematically she is so smart, she’s very good with numbers. She has Mathletics on her iPad, and then she plays math games and tests. She loves it.”

Find out how to apply for a Family Fund grant

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