The Times Australia
The Times World News

.

Autistic people need a greater say in where NZ's autism research funding is spent – here’s a way forward

  • Written by Lisa Marie Emerson, Senior Lecturer in Child and Family Psychology, University of Canterbury
Autistic people need a greater say in where NZ's autism research funding is spent – here’s a way forward

Research has tremendous potential to help the estimated 93,000 autistic New Zealanders live the lives they want to live. The trouble is, funding for autism research is currently skewed away from the areas autistic people themselves say would be most useful.

When asked what future autism research should be prioritised[1], autistic people and autism communities often point to the need for support and services in education, health and well-being across all ages.

Yet we found a staggering two-thirds of funding for autism research awarded in Aotearoa New Zealand has been invested in projects that seek to understand biological differences associated with autism.

By contrast, 32% of total funding was invested in research into support for autistic people. There was no investment in research aimed at maximising the quality of life of autistic people by addressing the accessibility and quality of services, or into the needs of autistic people as they age.

Read more: Autism advocacy and research misses the mark if autistic people are left out[2]

Biology bias

Within Aotearoa there are multiple perspectives on autism. According to a Western viewpoint, it’s a neuro-developmental condition[3] characterised by differences in the way people think, how they perceive the world and how they process social information, including communication and interaction with others. Indigenous understandings[4] emphasise the valuing of such differences within the community.

A medicalised view that sees autism as a deficit may have contributed to a dominance of biological research. But looking through the window of biology gives us only one perspective on the vulnerabilities autistic people may face.

Read more: Autism advocacy and research misses the mark if autistic people are left out[5]

This is out of step with the preferences autistic people actually describe, yet the pattern is largely similar across Western countries.

In 2019, the International Autism Coordinating Committee published a report[6] looking at autism research funding in the UK, Canada, US and Australia. Across all countries, the largest proportion of funding was allocated to basic science research, with 36% invested in biological research and 23% invested in causes and risk factors such as genetics and epigenetics. Only 16% was invested in supports, and 5% in services.

Support in daily life

For autism research to be more relevant to the autistic community, it must realign with their own priorities. To that end, an international movement toward genuine partnership[7] in autism research has evolved. Autistic people are being included in the research process, from generating ideas through to carrying out the research and sharing the findings.

In the UK and Australia[8], researchers and autistic people have co-produced autism research priorities driven by community perspectives. The highest-rated priorities included more applied research, which seeks to find solutions to practical challenges autistic people face.

Read more: How to help autistic children socialise in school[9]

For example, research can address problems in education and the workplace, and how more inclusive spaces and practices might enable autistic people to be accepted and valued.

Research that aims to find ways of improving public knowledge and acceptance of autism could help address discrimination and stigma. Such a neurodiversity perspective frames neurological differences not as deficits but as natural variations of human experience.

Setting new priorities: a community partnership research project aims to inform the future direction of autism research in Aotearoa New Zealand.

Away from tokenism

To establish the research priorities[10] of the autistic community in Aotearoa New Zealand, the Health Research Council has funded a project I’ve been leading throughout 2021, involving a team of autistic and non-autistic researchers.

From a series of community focus groups (including parents and whānau, Māori, healthcare and education practitioners, Pacific peoples and other researchers) we designed an online survey[11] that is now open to the autism community.

Read more: Research on facial expressions challenges the way we think about autism[12]

We are also interviewing autistic young people to find out what they think. We plan to share all findings with the community, researchers and funders next year.

My hope is that this partnership project[13] can inform the future direction of autism research in Aotearoa New Zealand – both in terms of the questions we ask and the way we try to answer them.

By listening to the preferences and priorities of the autistic community we hope to go beyond the tokenistic towards a genuine inclusiveness in research. Autistic partnership in the research moves us away from “research on” to “research with”, and can directly tackle the problems created by the present lack of balance in autism research.

Read more https://theconversation.com/autistic-people-need-a-greater-say-in-where-nzs-autism-research-funding-is-spent-heres-a-way-forward-171948

Times Magazine

Choosing the Right Legal Aid Lawyer in Sutherland Shire: Key Considerations

Legal aid services play an essential role in ensuring access to justice for all. For people in the Sutherland Shire who may not have the financial means to pay for private legal assistance, legal aid ensures that everyone has access to representa...

Watercolor vs. Oil vs. Digital: Which Medium Fits Your Pet's Personality?

When it comes to immortalizing your pet’s unique personality in art, choosing the right medium is essential. Each artistic medium, whether watercolor, oil, or digital, has distinct qualities that can bring out the spirit of your furry friend in dif...

DIY Is In: How Aussie Parents Are Redefining Birthday Parties

When planning his daughter’s birthday, Rich opted for a DIY approach, inspired by her love for drawing maps and giving clues. Their weekend tradition of hiding treats at home sparked the idea, and with a pirate ship playground already chosen as t...

When Touchscreens Turn Temperamental: What to Do Before You Panic

When your touchscreen starts acting up, ignoring taps, registering phantom touches, or freezing entirely, it can feel like your entire setup is falling apart. Before you rush to replace the device, it’s worth taking a deep breath and exploring what c...

Why Social Media Marketing Matters for Businesses in Australia

Today social media is a big part of daily life. All over Australia people use Facebook, Instagram, TikTok , LinkedIn and Twitter to stay connected, share updates and find new ideas. For businesses this means a great chance to reach new customers and...

Building an AI-First Culture in Your Company

AI isn't just something to think about anymore - it's becoming part of how we live and work, whether we like it or not. At the office, it definitely helps us move faster. But here's the thing: just using tools like ChatGPT or plugging AI into your wo...

The Times Features

From Farms to Festivals: How Regional NSW Is Repurposing Shipping Containers

Regional NSW communities are repurposing containers for farms, tourism, and events Farmers and small businesses use them as cost-effective, flexible infrastructure Festivals ...

What a Mobile Speech Pathologist Really Does for Late Talkers

As a parent, it’s natural to keep a close eye on your child’s development. When your toddler isn’t using as many words as their peers, the internet can feel like a rabbit hole ...

Benefits of Tree Pruning for a Thriving Australian Garden

Tree pruning is an essential aspect of garden maintenance that often doesn't get the attention it deserves. It's a practice that involves the selective removal of certain parts...

What is psychosocial therapy? And why is the government thinking about adding it to Medicare for kids?

The government is considering new, bulk-billed health checks for three-year-olds, to pick up developmental concerns and refer kids that might need additional support. The de...

Detect Hidden Water Leaks Fast: Don’t Ignore Hot Water System Leaks

Detecting water leaks early is crucial for preventing extensive damage to your home. Among the various parts of a home’s plumbing system, hot water systems are particularly suscept...

Why do hamstring injuries happen so often and how can they be prevented?

In a recent clash against the Melbourne Storm, the Brisbane Broncos endured a nightmare rarely seen in professional sport — three players tore their hamstrings[1] in a single g...