Wait times for autism assessments leave families stuck in limbo
After waiting several months for a public hospital appointment, a Chinese family paid $800 for a private autism assessment for their son.
Rocky Xu became concerned in early 2023 when his three-year-old son, Lucas, remained nonverbal and showed signs of autism.
The family's initial GP referral took four months, and Xu didn't receive a formal diagnosis through the public system for this son until August 2024 - 18 months after he first sought help.
Xu's family is not alone.
Between 2019 and 2021, Yuan Fang waited more than 15 months for a diagnosis for her seven-year-old son, Jining.
The lengthy wait placed significant strain on the family.
At the time, Fang was caring for a newborn alone while trying to manage Jining's increasingly difficult behaviour with little guidance or support.
"There were times when Jining lost control and I had no choice but to call the police for help," she said.
Jining also struggled at public school.
Fang recalled her son often coming home hungry, his lunchbox either smeared with sunscreen or kicked aside by other children.
"It was such a dark time, and every step forward felt difficult," she said. "My only hope came from what the social worker told me - that things would get better once he was diagnosed."
Yuan Fang waited more than 15 months for a diagnosis for her seven-year-old son, Jining.
Photo:
RNZ / Yiting Lin
A 2020 report compiled by Autism New Zealand found that the average wait time for an autism diagnosis through the public system was 10.9 months.
However, Autism New Zealand chief executive Dane Dougan said the actual wait could stretch to three years for some children.
"Autism involves a range of behaviours and can be difficult to diagnose," Dougan said. "There's also a lack of resources in the diagnostic system, and not enough trained professionals to meet the demand."
In New Zealand, the process of diagnosing autism in children typically begins with a GP referral to a developmental or paediatric service.
The referral is forwarded to a local District Health Board (now part of Health New Zealand), where the child is placed on a wait list for a multi-disciplinary assessment with professionals such as paediatricians, psychologists and speech-language therapists.
Dougan described a formal diagnosis as the "key to unlocking the door" to support, noting that families could not access government services for an autistic child without it.
Rachel Haggerty, funding/hospitals director at Health NZ, said the number of autism assessment referrals for children nationwide was high.
"We know this is frustrating for parents and caregivers, and we are working hard to reduce the wait list for first specialist assessments," Haggerty said.
"This includes establishing regional pediatric developmental project groups [that are] focused on helping ensure the children who require assessment can be seen, and on meeting the government's wait list target," she said.
"We are also working with GPs in some regions to provide with specialist advice to enable them to manage their patients at this time."
Xu relied on private intervention services for Lucas during their wait for an assessment, spending up to $2000 a week. The family eventually had to stop, as the cost became unsustainable.
Autism New Zealand chief executive Dane Dougan
Photo:
Supplied
Dougan said the situation had worsened in recent years, both in accessing a diagnosis and receiving support afterward.
Families facing language or cultural barriers typically encountered even greater challenges.
"There needs to be improvement and targeted support to ensure safe pathways for specific communities to navigate the process with resources that are culturally appropriate," he said.
Yuchen Lin, a speech-language therapist and former member of the Ministry of Education's Learning Support team, said part of the delay stemmed from issues with GP referrals - a process that should be more transparent for families.
"Some GPs lack a full understanding of how to write referrals and may have limited insight into the child's behaviour, which can lead to referrals being rejected or returned for more information," she said.
She said many parents - especially Chinese families making a first-time referral - were unfamiliar with the process and unaware they could follow up with their GP, leaving them "waiting in limbo."
Speech-language therapist Yuchen Lin
Photo:
Supplied
Lin said some parents might dismiss their child's behaviour as part of adjusting to a new country or fear the stigma associated with an early diagnosis.
She said such hesitation could delay early intervention - something that was critical to a child's development.
"Early intervention can begin as early as age two or three, and plays a vital role in language, behaviour and overall development," she said.
"It doesn't require a confirmed diagnosis and can happen alongside the assessment process."
Xu experienced that hesitation firsthand with his son as the family struggled for a long time to accept reality.
"I couldn't accept that he had autism," he recalled.
"Even on the day we saw the specialist, I kept insisting it was just developmental delays or a language disorder.
"But whether the diagnosis comes early or late doesn't change the outcome. The earlier you start preparing, the better."
Lin also underscored the need for stronger translation services to ensure timely and accurate communication for non-English-speaking families.
"Professional interpreters need to use clear, simple language with families and appropriate terminology with specialists," Lin said. "They are the bridge between the two."
Yuan Fang's son, Jining, enjoys sailing in locations near Auckland.
Photo:
Supplied
The Chinese Family Disability Support Group, which assists more than 300 Chinese families with autistic children in Auckland, said a growing number were turning to costly private assessments as public wait times stretched to 18-24 months.
Many newly diagnosed families also relied on private services for support, struggling to navigate New Zealand's complex disability system.
"Disability services here operate very differently from those in China," said Yoky Yao, the group's disability cultural advisor. "It takes time and experience to understand how the system works."
"Many families miss out on support their children are eligible for," Yao said. "While some can afford private services, it's more beneficial in the long run to engage with the public system."
Even when support was available, Fang said parents couldn't simply hand over responsibility to professionals - they needed to learn and work alongside them.
Fang encouraged parents to prioritise their own wellbeing.
"Caring for an autistic child is emotionally demanding and requires long-term commitment," she said. "To support your child over time, you need to stay strong - and that means taking care of yourself first."
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