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A double diagnosis

Photo: Kara with her puppy

Returning back to school after a six-month break was nerve-wracking for Kara. As a deaf and autistic young person, changes in routine are scary, and of course there was the added difficulty of her whole school wearing face masks. “It’s been really difficult being back,” says Kara. “The teachers and the pupils all wear faces masks so I can’t see their lips at all. This is the hardest challenge I’ve faced.”

Kara’s deafness came as a surprise to mum Lorraine, but the family quickly took it in their stride. “Kara was born at 26 weeks,” explains Lorraine. “She had a lot of health issues so we found out quite late that she was deaf, she was one and a half. They thought she’d need grommets but a later test diagnosed her as profoundly deaf and she was fitted with two cochlear implants. It was a shock.”

By a stroke of good luck, the school Kara’s older sister Abbie attended had an attached hearing impaired unit. “We had no idea what a cochlear implant was at the time,” Lorraine says. “But Abbie knew children with implants so it was just perfect. The school was great from the very beginning.”

In comparison, Kara’s journey with autism hasn’t been so straightforward. The condition was first suggested to Lorraine by Kara’s speech therapist. “The diagnosis took a long time but it wasn’t a surprise at all,” says Lorraine. “She was 12 or 13 when she was finally diagnosed. Kara was very good at hiding the signs of autism, she wouldn’t show her emotions at school but at home she’d let them out. Girls with autism often mimic everyone around them, they’re very observant to what’s going on and often just try to fit in. The school would say, ‘What are you talking about? Kara’s the perfect pupil!’

“But at home she could be angry, she was very emotional and would react to situations differently.

"She’s confident to say, ‘I’m different and I’m fine with that.’"

For example, when she got her cochlear implant changed, it was a massive issue for her. We weren’t allowed to touch it and she would only wear certain clothes and eat certain food.

“Kara’s not like that at all now, thanks to the diagnosis. She stands up for herself and she’s confident to say, ‘I’m different and I’m fine with that.’”

One of the problems the family faced when trying to get a diagnosis was that often professionals would put these differences down to Kara’s deafness. “A lot of things got put down to her deafness which is a shame,” says Lorraine. “I think if she wasn’t deaf it would be completely different, but people would say, ‘Oh the deafness is the reason she can’t express herself properly, that’s why she struggles with changes in routine.’

“There’s definitely a crossover, Kara can get frustrated that she can’t get her point across or doesn’t know the correct language to say how she’s feeling, but that could be partly her deafness and partly her autism.”

Although Kara has always felt comfortable speaking up about her deafness, it was a different story when it came to autism. “I was really embarrassed about it,” says Kara.

"Face masks are the hardest challenge I’ve faced."

It was a teacher at school who encouraged Kara to be more open about her autism, telling her she’d done so much to help raise deaf awareness through her YouTube channel and asking if perhaps she could do the same for autism. It was a big decision but Kara bravely decided to tell everyone about her diagnosis via a YouTube video. “I started my YouTube channel because I love to help people and so I talked about my deafness, why I’m deaf and what people can do to make life easier for me and others like me,” explains Kara.

“At first I didn’t want anyone at school to know about my autism. But I made the video explaining that I had it and my friends were really shocked but they really didn’t mind. I’m so happy I made that video. I feel much more confident now.”

Since then, Kara’s YouTube channel has gone from strength-to-strength. “Loads of people have reached out to me and lots of people comment,” Kara says. “My friends, family and teachers are really proud. Now, I want to be a YouTube star!”

But while school was going well once her friends learnt about her autism, the long break due to the first coronavirus (COVID-19) lockdown threw a spanner in the works. Luckily Kara’s school was very supportive. “The school knew how much stress the change would cause,” Lorraine says. “But they went out of their way to support her, they FaceTimed Kara throughout.”

Despite the support, going back to school after a six-month break was a challenge. “I’m in third year now so I get to pick my classes,” Kara says. “It’s quite different as my tutors keep changing and I’m not with my favourite teacher anymore. It made me quite upset at the beginning. But I like all of my new teachers, they’ve been amazing with me. I really like my subjects too, drama is my favourite!”

However, the compulsory use of face coverings in secondary schools in Scotland has been harder to get used to. “I don’t know what to do in school when I don’t understand a teacher,” Kara says. “Do I tell them to take off the mask? I want them to be safe so I don’t know if I should or not. Even though I have a card saying I’m exempt from wearing a mask, I usually wear one because I’m embarrassed and worry people will think I’m breaking the rules.”

So now Kara’s going back to what she does best. he’s made a YouTube video explaining the issues she’s facing with masks at school and she’s sent it straight to Nicola Sturgeon, Scotland’s First Minister. “Clear masks would work really well for me,” Kara says. “I hope they start wearing those soon instead.”

https://youtube.com/embed/uSjRr35QYrQ?rel=0&showinfo=0

Kara's story

Kara tells us about how this year has been for her.