Neurodiverse Kiwis explain what being autistic means to them - and how New Zealand can do better by them

Two Kiwis open up about living in New Zealand with autism and neurological variations and how Kiwis can show support.
Two Kiwis open up about living in New Zealand with autism and neurological variations and how Kiwis can show support. Photo credit: Getty Images.

For Kiwis like Gabrielle Hogg, 33, and Joshua Sime, 20, living with neurological diversity has given them a greater understanding of the positives that come from different ways of thinking. 

The pair are among the thousands of New Zealanders who live with conditions that hold dissimilarities to a "neurotypical" person. 

Hogg lives with autism, autistic catatonia and ADHD, while Sime has been diagnosed with autism, PTSD, OCD and generalised anxiety disorder. 

Autism can refer to a wide range of brain variations, affecting how people think, behave and perceive the world as well as communicate and interact socially. 

Post-traumatic stress disorder (PTSD) is commonly diagnosed when people witness or experience a traumatic event, while obsessive-compulsive disorder (OCD) relates to mental health and a person's recurring thoughts driving them to do something repetitively. 

Hogg told Newshub of some of the challenges she faces in day-to-day life, but also about the benefits too. She says she has support workers to help her with shopping, money management, and personal care. 

"My needs can fluctuate up and down, so it's not set in stone," she says. "Some days I've got more support needs."

For Sime, little tasks like going to the supermarket could be a struggle.

"I struggle a lot with the social aspect, so in large crowds I'll start sweating, I'll start having anxiety and it's just quite overwhelming.

"In order for me to relax, I've got to step out of the room otherwise I can start being quite illogical - a lot of my autism means I can also overthink a lot and I struggle with noise, I struggle with lighting."

In 2017, he put a petition to Parliament calling for autism and disability-friendly supermarkets. In 2019, Countdown rolled out its weekly 'quiet hours' in stores nationwide.

Last month, Children's Commissioner Andrew Becroft described neurodiversity as one of the "great unaddressed issues of our time". 

"Our office often hears stories from children and young people who are neurodiverse of mental illness, disengagement, marginalisation, discrimination, and bullying," he said.

"Struggle and shame remain the reality for the majority of neurodiverse children in the New Zealand classroom," added Dyslexia Foundation New Zealand chair of trustees Guy Pope-Mayell.

"At the family level, there is a real journey in dealing with the overwhelm of discovering your child has dyslexic or neurodiverse tendencies. You hurt for them, you are all vulnerable and it is natural to feel confusion, doubt, and shame."

So what is neurodiversity exactly?

Being neurodiverse can be an ongoing challenge, but normalising it is perhaps a greater challenge for those on the spectrum and their advocates.

Hogg and Sime don't want anyone to speak on behalf of them; they want a voice, and want New Zealanders to know it isn't a disability.

Altogether Autism national manager Catherine Trezona explains neurodiversity is about brain differences.

The term neurodiversity is relatively fresh, having only been introduced by sociologist Judy Singer in the 1990s. In a nutshell, it's used to describe the fact some brains are wired differently, naturally causing various neurological disorders.  

Trezona says the struggles neurodiverse individuals face often result from a lack of understanding. 

"It's pretty much always to do with the world that doesn't get it… at the moment, autistic kids are not being included a lot of the time because the environment is not right for them," Trezona says.

But a trait that comes with being neurodiverse is strength and focus, says Trezona.

"We need out-of-the-box thinkers, and that's what neurodiversity gives us - particularly at this time in history."

How many New Zealanders are neurodiverse?

While autism alone is thought to impact 93,000 New Zealanders and an estimated one in 20 have ADHD, it's unclear how many Kiwis fall under the wider umbrella of neurodiversity. 

The World Health Organization says autism spectrum disorders have also become more prevalent in the past 50 years, but the truth is there are no firm figures on the prevalence of autism in New Zealand.

"Nobody's collecting the stats, so we estimate probably around 90,000 New Zealanders may be autistic... [but] we're guessing - we're basing it on international rates." Trezona says. 

"Two things that we're often asked about autism, and I can't answer either of them; are 'how many people in Aotearoa New Zealand are autistic?' - we don't know. And the other is 'what causes it?' - we don't know that either."   

How can you help?

As part of helping someone who is neurodiverse, it's important to remember no person is the same - and all individuals deserve a voice.

"Consult neurodiverse people themselves," Hogg says. "That way you're including our voice, where a lot of the time people tend to talk for us.

"I'd rather people listen to me rather than my support worker because I'm actually very knowledgeable." 

Sime adds: "Being listened to, for me, is quite important - it helps my anxiety lessen… if people listened to us advocating about autism then more people will become aware that people do have autism and the world needs to be more inclusive." 

Businesses are becoming increasingly aware of this. Now, Sime says, it's a matter of others following suit - particularly in the education sector.

"I think there needs to be a bit more put towards learning disability classrooms and also more training towards dealing with people on the spectrum and people that are neurodiverse."