How do we get autism support right in Aotearoa New Zealand?

22 Mar 2024

Extensive work is needed to get Autism support right in New Zealand.

Autism CRC research, conducted by Autism New Zealand and Victoria University of Wellington, highlights the urgent need to address the many gaps, inconsistencies and barriers to autism supports and services in Aotearoa New Zealand.

The study worked with 1,042 participants, including autistic individuals, family members and professionals, with the goal of understanding the nature of existing supports, and providing suggestions for future supports and implementation.

The report identifies significant barriers to support across almost all areas of life. In particular, access to diagnosis and supports for adults was rated as extremely poor, with no public pathway to diagnosis for autistic adults in New Zealand. Even with a diagnosis, autistic adults indicated a complete absence of appropriate mental health support and accessible housing, leading at times to catastrophic outcomes.

“I don’t know of any autistic people who haven’t been bullied.”

“People have to fight to be believed.”

“It’s hard to get help when people don’t let me speak.”

Further, both family/whānau and professionals noted a lack of training and access to diagnosis for children. If a diagnosis is secured, there are few options for early support which international research demonstrates is the most effective way to allow autistic children to achieve their full potential.

“Parents shouldn’t have to continually jump through hoops to gain access to funding.”

Autism NZ Chief Executive Dane Dougan said, "These results affirm what we have known anecdotally for years: that the supports in place in New Zealand do not serve the community, and in many cases actively work against autistic people and their whanau. Autism NZ has a suite of essential, evidence-based and cost-effective programs that address many of these barriers and failings, but we need government to recognise the need and meet it with appropriate funding so that we can implement and offer these services consistently, nationwide.”

International evidence shows that autistic people experience poor educational outcomes, high rates of unemployment, and a large percentage experience suicidal thoughts and mental health difficulties. Recent research also shows that young autistic people are twice as likely to die by 25 as their non-autistic counterparts. To address these disparities, many countries have a dedicated Autism Strategy in place, which New Zealand currently lacks. Autism NZ is committed to ensuring that this research work leads to effective outcomes for the autistic community, and is advocating for systemic change and strategic planning for the community going forward.

This work was undertaken as part of a larger Autism CRC project to ensure National Guidelines are updated and deliver on the impact they promise, across both Australia and New Zealand.  

For more information see the Final Report and Community Summary