Kilkenny woman diagnosed with autism at 17 despite two negative tests as a child

Sarah Williams from Kilkenny was diagnosed with autism at 17-years-old and had to home-school herself for two years.

Sarah, who is now 20, is from Freshford, and has shared her story to help raise awareness on the autism spectrum.

Autism Spectrum Disorder (ASD), commonly known as Autism, is a complex, neurodevelopmental condition. Its symptoms are characterised by challenges with social skills, repetitive behaviours, speech, and nonverbal communication, according to a report.

According to the latest available data, more than 4,000 families are waiting for first-time autism assessments, with some waits exceeding two years.

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Girls in particular are often identified much later than boys, sometimes not until adolescence meaning they can miss years of support when it matters most, according to a report by Infant.

Recent research suggests that autism is just as common in girls as in boys, yet boys are up to four times more likely to be diagnosed in childhood.

Sarah was tested for autism twice when she was a very young girl when her mother had noticed traits in her behaviour that pointed towards autism. Both tests came back negative, leaving her mother frustrated, confused and without support.

Sarah spent 17 years not understanding her behaviour properly and had a very hard time dealing with many parts of her life, especially school.

"My mam found it very frustrating because she felt like there was something there but they weren't really listening to her. Then when I got older in my teenage years it got more obvious. So once I got diagnosed there was a big relief about it," Sarah said.

"My mam felt like she wasn't just in her head about it especially because a lot of parents with children with special needs feel like people say 'oh it's just in your head but she knew there was something there.'"

Sarah's mother said that from a very young age her daughter always liked structure and routine, a personality trait commonly found in autistic people.

"As parents we always suspected that Sarah had autism but like many young girls Sarah masked a lot and she went undiagnosed. By the time Sarah went into fifth year she struggled. Suddenly it was a new environment. Sarah came to me and said she needed help," her mam said.

Sarah got to a stage in her life where she couldn't go to school at all and ended up teaching herself at home for her Leaving Certificate. 

This was a very lonely two years for Sarah and it came at a time when she had only just got the verification that she was indeed autistic. 

"I think the main thing for me was after Covid because we weren't in school and when we had to start going back to school I wouldn't go into school because I would have such a big fear of it. So my mam would have to sit outside the door in her car and wait for my day to be over so I would go in," Sarah said.

"It was really difficult. My parents had to do a lot of helping but my deputy principal was brilliant. I wasn't going to school and they were like 'well do you want to complete the Leaving Cert?' I did, so I just brought home all my books and I would just study the chapters I would think were the most important, and then for the exams, and I'd just go in and complete them and then come home so it was very tough to do it on my own."

Sarah's mother said: "I’m so grateful for the support from the vice principal of her school. As a parent it was incredibly hard to see Sarah struggle. She did so well in her results and now she has had the courage to go for the Rose of Kilkenny and meeting all the wonderful girls she's met along the way."

Sarah said there is an online schooling programme in Ireland now "which is really brilliant for people, especially with disabilities. But for me it was definitely very lonely especially because school is the main reason you go in to see people. You talk to people so I was very isolated. I didn't see anyone really and then also with the with all my appointments in CAMHS it did make it very hard to meet other people."

Sarah is studying to become a qualified SNA teacher at Ormond College in Kilkenny. This decision was heavily influenced by her own experience living with autism.

She said that her course is nothing like her experience in school because she is not stuck to the one spot and has more freedom to be herself.

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"It's a huge difference. I actually didn't know if I would be able to go in but they're absolutely brilliant. It doesn't feel like you have to stay in this exact space all day. I find it very difficult just staying in the one area for the whole day.

"There has been a massive change with even me telling people about it. I would never tell anyone until I started that course so it's a big deal."

She chose this career path because she herself had such a hard time in school so she would be able to understand and help other children who need support.

"That's definitely what I would have needed when I was in school and I wish I had that."

Sarah said that the stereotypes surrounding autism "need to be stopped."

"There's a lot of stereotypes about autism such as injections and medications are causing it. No one actually knows what the cause of autism is yet.

"I feel like in Ireland we don't have as much as support. 85% of autistic people in Ireland are unemployed at the moment so I think there definitely needs to be a big change as we're just the exact same as everyone else."

Sarah said that claims that autism is caused by vaccines or medication are something she has heard from older people in her life who say, 'we didn't have it in our time.'

"It's definitely frustrating that we don't know why autism is caused because people do like to make up their own things to try and figure out what it is."