When Holly Earl read her autism diagnosis she says it was like reading a book about herself. 

The 18-year-old Christchurch student was diagnosed with autism and dyslexia when she was 14 which she says is early for a girl, but late overall. 

“I was always a shy kid but there were clear signs when the lockdown hit and my routine went away. 

“It uncovered a lot of things I had been masking.” 

Holly says she tended to mimic the social behaviour of others around her, and so when she became isolated at home during lockdown she no longer had that to help her act a certain way.

She also lost a lot of routine and structure that came with school and felt more comfortable at home to express feelings that she otherwise would have hidden at school.

“I was having more panic attacks and it became apparent that I wasn't coping.”

As part of our new series The Regions, we followed the story of 18-year old Charlotte Billings, who finally got an autism diagnosis a decade after her mum first took her to be assessed. 

In this article, we speak to three other young neurodiverse people about their experience.

Neurodiversity in New Zealand

ADHD, autism, dyspraxia, and dyslexia all fall under the neurodiversity umbrella. 

One in 5 - or 320,000 - young people in New Zealand are neurodiverse. 

They have brains wired to think, learn, perceive the world and feel differently from neurotypical people.

Of that 320,000, 10% are dyslexic, 5% have ADHD, 5% are gifted, 2% have autism, and many have multiple neurodiversities.

Gender can impact diagnosis

According to Altogether Autism researcher Ashe Yee, girls are more likely to go undiagnosed or get diagnosed later in life as they mask the symptoms more than their male counterparts. 

Dr Marthinus Bekker, clinical psychologist and treasurer elect of the New Zealand College of Clinical Psychologists, acknowledges there are more males than females diagnosed, but says it isn’t because of a skew in assessment criteria. 

“Of course, young men get diagnosed with the likes of ADHD far more regularly than young women, there is an under-diagnosis of young women. 

“Their presentations are much different. The symptoms stick out for boys.”

Dr Bekker points to ADHD in particular saying there are three kinds: combined type, inattentive type, or hyperactive type.

He says boys tend to present with combined or hyperactive type where they can’t sit in their seat, are disruptive at school, and highly impulsive. 

Whereas girls tend to have the inattentive type so they may sit at the back of the class and drift off, going unnoticed, he says. 

“The behaviour for inattentive doesn’t stand out as much and people can develop good coping mechanisms.”

When it comes to autism, Dr Bekker says young girls in general, even without autism, develop better social skills than boys at a younger age. 

So young girls with autism would still be doing better than their male counterparts, but worse than their female counterparts, he says. 

“So they can get a bit lost.” 

Getting a diagnosis

Holly went to her GP about what she was experiencing and says she was lucky the GP’s daughter had autism too so understood what it was. 

However, it took a lot longer after that initial GP visit to formally get the diagnosis. 

“I was put on the waiting list for Child Adolescent and Family Services and the waiting list for CAFS was years long and unfortunately the public system is extremely broken and not fit for purpose. 

“I was lucky enough that my family could afford to go privately and I got a formal diagnosis and support plan from a private psychologist.”

She says she didn’t know what autism was prior to that but since getting her diagnosis she has found it incredibly empowering to understand how her brain works. 

She’s gone on to become a Young Neurodiverse Champion, a group of young neurodiverse students from all around New Zealand.

When asked to describe what having autism and dyslexia is like for her, Holly says she can’t because she knows nothing else. 

However she says it’s a common misconception that people with autism are cold and don’t feel things. 

“I’m the other end of the spectrum, I feel things a lot more deeply and I love to connect with people, I just struggle to make that connection, but I crave it.” 

She says young girls often feel like there’s something wrong with them before getting an autism diagnosis but her message is to embrace it. 

“Embrace the beauty of it. 

“We get labelled and put in a box but it doesn’t have to limit you.”

It’s what makes you unique

Niko Sawyer’s message to young people with a new neurodiverse diagnosis is the same. 

Sure, there’s been times he’s been annoyed with his diagnosis, and it’s been difficult, but he’s come to accept it’s what makes him unique. 

“It can have offshoots that lead to wonderful things.”

Niko has had some form of label from the time he was two. 

He has Asperger’s, dysgraphia, ADHD, and anxiety disorder. Niko was diagnosed with these all before he was nine years old. 

Some of the early signs were restlessness, with Niko saying he was a terrible sleeper, as well as hyper fixation on certain things. 

“If I’m working on something and I’m into it, I am so focused on it, I can’t be pulled away. It’s really useful for getting work done. 

“But at the same time it’s a double-edged sword because if I’m not enjoying the work anything else can distract me.”

Not being able to keep eye contact was also an early sign.

If he doesn’t know someone he finds it especially hard to keep eye contact, which can be hard as he works in hospitality. 

He says most people have a mental bubble which can stop outside distractions from coming in, but for him everything pierces his bubble. 

“It gets in your headspace. Neurotypical people have walls up that can block those external things out, but I don’t have those barriers. It can be very overwhelming. It’s a bombardment feeling.

“I take Ritalin now, and that helps calm me and puts things on easy mode.”

Getting diagnosed later in life

Unlike Holly and Niko who were diagnosed in their youth, Christina Gera, also known as Cat, didn’t get her diagnosis until she was 20. 

She was midway through university when she started seeking out a diagnosis for ADHD. 

“I saw a lot of resources and information online and started keeping my own notebook of symptoms I identified with and when I felt confident enough I then approached my doctor and said it was something I wanted to explore. My doctor was really good and supportive,” the now 22-year-old says. 

It took Cat two years to finally get a diagnosis due to waitlists and financial obstacles. 

She had to pay $1500 to go through the private healthcare system, and even then had to do the consultation and assessment over Zoom with a psychiatrist in Auckland as she couldn’t book in with one in Christchurch where she lives. 

The day she got the diagnosis she remembers feeling emotional and anxious. 

“Building up to it, it was like ‘What if I don’t have it, and I’ve just convinced myself’. I internalised it quite a lot.”

But then everything started to click, especially looking back at moments in her life. 

She says she doesn’t know how her family didn’t pick it up and she wishes there was a teacher who spotted the signs. 

“I did well at school, but struggled to deliver and hand things in on time. 

“The constant theme in school reports was I’m a great student but if I applied myself I’d see better results.”

Since getting her diagnosis she feels more confident in herself and has just graduated from university and plans to dive into more study. 

She says she feels confident in her future and where she wants to go. 

“Life’s really good, I’m in the process of being kinder to myself and what accommodations work for me. I’m medicated, which helps a lot.”

Holly likes to focus on the positives of having ADHD, like her curiosity and creativity.

“My focus fluctuates from different things so I learn a lot of skills in different areas. 

“It means I’m good at thinking outside the box and being creative and innovative and I hold those traits close to me.”

But it’s not without its challenges - the biggest being misconceptions, she says. 

“Not many people have a firm understanding of what ADHD is or they think it’s hyperactivity.

“Similarly to how people joke about being OCD, people do the same with ADHD, which can feel like a slap in the face.”

“We are still people, we are equal, we are valuable in the workplace. We’re not that much different although our brains are wired a little bit differently.” 

What’s being done in the health system

In a statement a Health NZ spokesperson said they were working hard to improve New Zealand’s approach to mental wellbeing, so people are supported to stay well and have fair access to help that works for them. 

“This includes helping people with neurodiverse conditions, which present along a continuum of needs. 

“The intention of the current approach is for people to receive support earlier and, where possible, prevent people from reaching a point where they need specialist treatment and support. This work is being carried out in collaboration and alongside our health sector partners. 

“We acknowledge the impact waiting for publicly-funded ADHD assessments and treatment has on people and their families.”

The spokesperson said wait times for specialist mental health services are longer than they would like and are due to a range of factors including workforce shortages and increasing demand for services.

ADHD assessments and treatment had increased significantly, they said. 

“As with any referral made to a specialist mental health service, consideration is given to the severity of the condition and how it impacts a person’s life.

“We do want to assure people who need urgent assessment or support that they will be prioritised and seen urgently.”

The Regions is a docuseries that gives a snapshot of the lives of regional rangatahi in Aotearoa and the issues that matter to them.

Watch the series now on TVNZ+ and YouTube.

Made with the support of NZ On Air.

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