FOCUS: "Everything in my life just suddenly made a lot more sense once I got my diagnosis"

Friday 31 March 2023

In honour of World Autism Acceptance Week this week, Autism Jersey has been holding a whole host of events to raise awareness — with presentations to local schools and businesses, social events, guest speakers, and a stall at Charing Cross.

However, despite increasing awareness and education about the condition, society's understanding of autism unfortunately still remains limited by outdated stereotypes and incorrect assumptions.

This misunderstanding particularly impacts autistic women and girls — who often struggle to get a diagnosis, receive a diagnosis late in life, or are misdiagnosed with conditions other than autism. 

In the past, it was assumed that autistic people were overwhelmingly men and boys, and only very rarely women and girls. However, there are in fact many women, girls and non-binary people on the autism spectrum.

Although autism research and professional practice is slowly catching up to the realities of life for autistic women and girls, many barriers to diagnosis and support remain. 

This experience rings true for one islander. Catherine* was recently diagnosed with autism in her early 40s. 

When her partner moved in with her last year, Catherine began to realise that she lived her life differently to other people.

She explained: "All of my clothes are organised by colour, all of my DVDs are in alphabetical order, loads of stuff around my house is arranged by size! I have processes around everything, even down to how I get up in the morning."

Catherine's partner — who had worked with people with autism before — also noticed that Catherine takes things very literally, and asked if she'd ever considered that she might have autism.

"I began reading about it," said Catherine. "I immediately identified with so many of the autistic traits so contacted Autism Jersey to find out if it was worth trying to get a diagnosis."

She added: "Sensory issues was a big indicator for me. I am sensitive to sound and can hear things others can’t, the same with smells. I have issues with bright light too and prefer darkness. I eat a a limited range of foods and don’t like them to mix on the plate."

After six months on the waiting list for the government's autism service, Catherine was disappointed to find out that it could take up to two years for her to get a diagnosis.

She said: "It's probably an autistic thing, but once I get something in my head, I have to know the answer."

Therefore, Catherine sought a diagnosis privately and ended up paying £2,000 for an assessment.

Catherine explained: "I'm lucky to be just about able to afford that amount of money, but it's a shame for people who can't. It essentially a two tier health system.

"I also had to be willing to take the risk that I could end up spending a huge amount of money to find out that I'm not actually autistic."

However, once Catherine received her diagnosis, she felt "really happy" and "relieved".

She explained that, looking back, it was clear that many problems in her younger years were due to being autistic but a lack of understanding of how the condition presents in women and girls meant that she had been misdiagnosed with a personality disorder in her youth.

Although it was a relief to finally get a diagnosis, Catherine was now confronted with the reality of living with autism.

"It was really difficult to speak to my family about my diagnosis," she admitted. "They just don't really understand; it's a generational thing."

Catherine also found that there was a "massive gap" in post-diagnostic services in the island.

She explained: "Once you're diagnosed with autism, it's really hard to know what to do next. I felt like I had no where to go and no one to talk to. A lot of the support groups are catered towards parents who have children with autism, rather than towards people who are diagnosed in later life.

"When you're diagnosed you're told that the more people you speak to with autism the better, but I didn't even know where to start!"

Through Autism Jersey, Catherine has now found more adults with autism for her to share her experiences with, and is keen to emphasise the benefits of neurodiversity.

She said: "People look at the negative side of autism, but having a neurodiverse workforce can be really beneficial."

Catherine is also keen to encourage employers to be accommodating and supportive of neurodiverse staff members.

She explained: "There's a quote which I really like that says: 'If you've met one autistic person, you've met one autistic person.' I think it sums up how autism presents differently in different people.

"If you met me, you probably wouldn't even realise I was autistic. I don't really struggle with eye contract or anything like that, but my partner says that I'm a completely different person outside of the house."

This is a common feature of autism in women and girls, as research shows that they often seem to have fewer social difficulties than autistic men and boys — however, this is often because they are more likely to 'mask' their autistic traits.

Catherine admits that she wishes she was diagnosed when she was younger, and encourages anyone — but particularly females and non-binary people — to look into getting a diagnosis if they feel they may be autistic.

"Everything in my life just suddenly made a lot more sense once I got my diagnosis," she said. "I'd always felt different and a bit weird, and now I finally know why!"

Lesley Harrison, Head of Charitable Services at Autism Jersey, said: “Research suggests that women and girls are more likely to be underdiagnosed, misdiagnosed or diagnosed with autism later in life.

"The work we undertake at Autism Jersey includes working in partnership with key agencies to align with support provisions and pathways to meet individuals needs and provide factual information within our local community to raise awareness, promote acceptance, and through those alliances focus on building a diverse and inclusive community.”

*names have been changed to protect anonymity.