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Research - Autism Prevalence in New Zealand

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Research - Autism Prevalence in New Zealand

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Autism Research - International and NZ

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We are often asked "what percentage of the New Zealand population are autistic" and "how common is an autism diagnosis" ... our researcher Emily Acraman answers this question here.
16 August 2021 - There is no definitive information on the national prevalence and incidence of autism, as New Zealand does not record this type of data.

Rather, New Zealand statistics are based on data reported in other countries and generalised to our population. Based on international data, it is estimated between 1-2% of people in New Zealand are autistic. That's between 50,000 to 100,000 people.

International Research

One of the leading sources of autism prevalence data is published in the United States by the Centers for Disease Control and Prevention (CDC).

This biannual report estimates the prevalence of autism among children (8 years old), based on national surveillance monitoring data.

The latest update of this report (2020) estimates that in children 8 years of age, approximately 18.5 per 1,000 (one in 54 children) are diagnosed as autistic. This figure is roughly 10% higher than the prevalence estimates from the previous report (published in 2018) which were 16.8 per 1,000 (one in 59 people). And approximately 175% higher than the estimates reported by the CDC network in their first report (published in 2007), which reported the prevalence of autism to be 6.7 per 1,000 children (Maenner et al, 2020).

The report also demonstrates that autism is 4.3 times more common (or more diagnosed) in boys than in girls. As well, autism occurs in all racial, ethnic and socioeconomic groups. Previous reports estimated autism was approximately 20%-30% higher among white children compared with black children, however the latest report notes this difference has dropped to 7%.

Canda have also recently released their first national surveillance report which monitors the rates of autism among 5 to 17-year-olds across Canada. In 2018, the first National Autism Surveillance System (NASS) report was published which estimated the prevalence of autism among 5 to 17-year-olds was 15.2 per 1,000 (1 in 66 children). Slightly lower than those reported by the US CDC in 2018 (1 in 59 children). The report also showed autistic males were diagnosed four times more frequently than females (Ofner et al., 2018).

New Zealand Research

New Zealand studies examining the incidence of autism in our population have been conducted, however on a much smaller scale. Thus, generally the New Zealand studies in this area tend to underestimate autism prevalence.

Early last year a New Zealand study was published which looked at the number of new autism diagnoses made between 2012-2016 in children aged between 0-19 years by the Hutt Valley District Health Board. This study demonstrated autism diagnoses were made in 1.48 per 1,000 children, and males were diagnosed 4 times more frequently than females. Of the 228 autistic young people that made up the study, 55.2% identified as New Zealand European, followed by 23.6% Māori, and 4.3% as Pasifika (Drysdale & van der Meer, 2020).

A second New Zealand study also published last year utilised three administrative health data sources to identify the number of children and young people diagnosed on the autism spectrum during 2015/2016. The study showed that in children 8-years-old, autism occurred in 1 out of every 102 children. As supported by all the above research, the study also found that autism was more common in males than females (approximately 3.6 to 1).

As well, that autism was slightly more common in New Zealand European ethnicity as opposed to Māori and Pasifika populations (Bowden et al, 2020).

Both these New Zealand studies report significantly lower rates of autistic people among the population in comparison to international research. It is likely these studies and the methods used to gather data undercount the occurrence of autism in New Zealand potentially by about 40% (Bowden et al, 2020). These studies do however aid in establishing a more comprehensive evidence base to inform research, policy and management and supports related to autism in New Zealand. As well, they provide a good estimate of the relative rates of autism among gender and ethnic groups in New Zealand.

Summary

Overall, it is difficult to say exactly how much of our population in New Zealand are autistic, because this data is not currently gathered. From international data, we can estimate approximately 1%-2% of our population are autistic, or approximately 1 in 54 young people. International research suggests the prevalence of autism is on the rise, however it is still difficult to say whether autism is becoming more common, or that it is just being more frequently diagnosed. Improvements in understanding and identification as well as broader diagnostic terms have likely contributed to this increase (Bowden et al, 2020). Our consultant clinical psychologist Jenny Gibbs draws on this more in her article .

New Zealand attempts at investigating autism prevalence in New Zealand, have limitations, and likely underreport the true rates of autism in our population. However, these studies do provide significant steps towards establishing a more comprehensive evidence base to inform autism policy and practices in New Zealand (Bowden et al, 2020).

References

Bowden, N., Thabrew, H., Kokaua, J., et al. (2020). Autism spectrum disorder/Takiwātanga: An integrated data infrastructure-based approach to autism spectrum disorder research in New Zealand. Autism, 24(8). https://doi.org/10.1177/1362361320939329

Drysdale, H., & van der Meer, L. (2020). Rates of autism spectrum disorder diagnosis for children and adolescents in the Hutt Valley region of New Zealand between 2012 and 2016. Research in Autism Spectrum Disorders, 73(ss-6). https://doi.org/10.1016/j.rasd.2020.101547

Maenner, M. J., Shaw, K.A., Baio, J., et al. (2020). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ, 69(4), 1-12. Read here.

Ofner, M., Coles, A., Decou, M. L., et al. (2018). Autism spectrum disorder among children and youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System. Ottawa, Canada: Public Health Agency of Canada. Retrieved from: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/autism-spectrum-disorder-children-youth-canada-2018.html

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Autism prevalence in New Zealand - Altogether Autism

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We are often asked "what percentage of the New Zealand population are autistic" and "how common is an autism diagnosis" ... our researcher Emily Acraman answers this question here. 16 August 2021 - There is no definitive information on the national prevalence and incidence of autism, as New Zealand does not record this type of data.

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Autism - Books, Strategies, Courses and more

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Top Autism Resources for Teachers (Books, Strategies, Courses, and More)

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According to the CDC, about 1 in 44 children is diagnosed with Autism Spectrum Disorder (ASD). That means most educators will encounter some of these students in their classrooms on a regular basis. Use these autism resources for teachers to better understand your students, and make your classroom the best possible learning space for them.

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Strength-based practical strategies to support inclusive education in NZ - Primary school

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Welcome

Congratulations on registering for Autism New Zealand's Tilting the Seesaw for Teams

This two-day course is for Teams of family and professionals, working together to support autistic tamariki aged 5 - 12 years. Teams may include parents, caregivers, other family/whānau, primary school teachers, teacher aids, learning assistants, SENCOs, or RTLBs.

Tilting the Seesaw for Teams is a combination of strength-based, practical strategies to support the everyday inclusion of autistic children between the primary school and home settings. Ongoing follow-up is provided by local Outreach Coordinators to continue supporting participants.

Outcomes of this course:

A better understanding of autism

Learning how to use the tamariki's strengths and interests to promote learning and communication

Learning how to implement consistent visual supports at home and at school

Learning how to implement stories for understanding at home and at school

Learning strategies for inclusion

Learning strategies for emotional regulation and reducing anxiety

Learning tools for challenging behaviour

Planning for success by creating an action plan and goals

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Congratulations on registering for Autism New Zealand's Tilting the Seesaw for Teams This two-day course is for Teams of family and professionals, working together to support autistic tamariki aged 5 - 12 years. Teams may include parents, caregivers, other family/whānau, primary school teachers, teacher aids, learning assistants, SENCOs, or RTLBs.

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Support, Services, Traits, Resources, Educational Programmes

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Autism NZ Links Autism NZ Resources External Links Newsletters Sort...Newest to OldestOldest to NewestTitle A-ZTitle Z-A

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New Zealand Autism Guidelines and Best Practice

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New Zealand Autism Guidelines and Best Practice

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Autism Spectrum Guidelines - 3rd Edition, New Zealand, 2022

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Who is the Guideline for?

The Guideline is for autistic people (tangata whaitakiwātanga), their whānau, health and disability professionals, community supporters, employers, policy advisers, and anyone involved in education - from early childhood to tertiary.

Most of the recommendations relate to improving the practices of people who provide support and services to people on the autism spectrum. However, because the guidelines emphasise the importance of providing guidance and support in understanding autism to the community, they will be of interest to many people across Aotearoa.

Why is the Guideline important?

The Guideline is an opportunity to better understand how best to support autistic people and their families. It also provides a framework to improve autism/takiwātanga services based on robust and reliable information.

The Guideline collates the best available information about effective ways to support autistic people into one volume. Readers do not have to seek out information from multiple sources, nor to try to make sense of sometimes conflicting claims.

The Guideline does not claim to cover every 'intervention' related to autism. It includes advice about well-researched approaches, therapies, and supports which have been proven to work, and also discourages use of those proven not to work or which cause harm.

The Guideline embraces autistic people as valued members of our community whose neurodivergence brings strengths and enriches our society. In this new edition, the Guideline's language has been carefully revised in collaboration with autistic people. In particular, it avoids describing autism in ways that pathologise the condition, or frames autism in a negative way.

What is a living guideline?

The Guideline is the world's first 'living guideline' in autism. Being a living guideline means there are regular updates undertaken in areas where new, significant research has emerged. Updates within the living guideline process are required when the recommendations in the guideline are no longer valid in view of changing research evidence.

The objective of a living guideline is to be more responsive to the needs of the people for whom it has been written. It is not only alive in the sense that the recommendations are kept up to date, it is alive because it has real meaning to those who use it.

Every year since 2009, research relating to a topic area is critically reviewed. This review is then considered by an advisory panel (the Living Guideline Group) to inform the revision and development of new recommendations.

This expert panel includes clinicians, educators, researchers, and people with lived experience. The review and the panel's decisions are published as Supplementary Papers which are listed at the bottom of this page. Recommendations from the first 13 completed topics have been incorporated into the Guideline's third edition.

leads the living guideline process and undertakes the systematic reviews independently on behalf of Whaikaha - Ministry of Disabled People. If you are interested in hearing more about this work/mahi, you can contact the Takiwātanga/Autism Living Guideline Manager through INSIGHT Research, or email us at contact@whaikaha.govt.nz.

Information or advice that differs from the Guideline

If the information in the Guideline contradicts advice or information you've received from other sources, you should:

Contact your health, child development, education, mental health, or other service provider as appropriate.

Working with Māori and Pacific people

When working with autistic people/tangata whaitakiwātanga who identify as Māori or Pacific people, it is helpful to:

Appoint a kaiarahi or other appropriate guide.

Develop and distribute all information packages about autism/takiwātanga in a culturally appropriate format

Develop a strategy to improve the cultural competency of the workforce to acquire knowledge and understanding of cultural values and world views and appropriately apply this to their work.

Our expectations for the Guideline

The Guideline provides a standard for service providers to hold themselves up to in their interactions with autistic people, as well as a standard for autistic people and their supporters to measure the actions of professionals against.

We expect people to use the Guideline to improve the lives of autistic people/tangata whaitakiwātanga so they can thrive. We expect professionals to use it to improve their practice, their communication, and their relationships with autistic people. We expect autistic people and their supporters will use it to keep themselves up to date about autism within the Aotearoa New Zealand context.

Next Steps

Planning is underway towards implementation of the Guideline including the possible development and co-design of new resources such as handbooks that are more accessible and targeted to different audiences such as clinicians, educators, and family and whānau.

Community engagement and consultation with the autism community and stakeholders will be the first step. It's important that autistic people, clinicians, educators, policymakers, carers, Māori and Pacific peoples, and society generally are brought along in this journey.

Supplementary papers

The Living Guideline Group regularly release documents that supplement the Aotearoa New Zealand Autism Guideline.

These include papers on the following topics:

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Aotearoa New Zealand Autism Guideline: Third Edition | Whaikaha - Ministry of Disabled People

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The Guideline is for autistic people (tangata whaitakiwātanga), their whānau, health and disability professionals, community supporters, employers, policy advisers, and anyone involved in education - from early childhood to tertiary. Most of the recommendations relate to improving the practices of people who provide support and services to people on the autism spectrum.

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Supporting children and young people with Autism

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Supporting children and young people with Autism

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MOE Website - Teaching tips and support resources/organisations

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See our advice on teaching students with autism spectrum disorder and links to other supporting resources and organisations.

Level of compliance

Main audience

Other

Recommended

Educators, Teachers and Kaiako

All Early Learning Services

SENCOs and Learning Support Coordinators

Teacher Aides

Learning Support Specialists

Parents, Caregivers and Whānau

Principals and Tumuaki

Boards

External agencies

Providing the right support for students with autism can significantly change their learning outcomes and their relationships.

About autism

Autism is experienced differently by everyone who has it. Children and students often need support in communicating, interacting and taking in information. Their strengths may include visual and spatial skills, non-verbal problem solving and both visual and auditory memory.

Educators should work with the student's individual strengths and interests in early childhood education and at school.

The autism guidelines that shape our approach

The autism guideline is the basis for working with autistic people in schools and the community. It's a constantly updated 'living guideline'.

Intensive early intervention for autistic children and students has significant benefits. The guideline recommends:

supportive accommodations and adjustments as soon as possible

responsive services for children, families and whānau

structured teaching and environments that reflect unique needs

support in everyday situations alongside their peers.

The research indicates that, with the right kind of teaching, autistic students develop social and communication skills, and manage their stress and behaviour.

Resources for working with autistic children and students

Two TKI (Te Kete Ipurangi) websites provide specialised teaching resources for working with autistic students.

Inclusive Education website

The Inclusive Education website(external link) has guides and downloads about autism and learning. You'll find out:

information about Autism

how to identify needs and strengths, and access support

how to support key areas of learning and wellbeing (communication, social interaction, thinking, and positive behaviour)

how to use whole-class strategies to support autistic students.

Autism and learning - Inclusive Education(external link)
TKI SE Online website

The TKI SE Online website(external link) is older but has other useful information.

Professional learning for people supporting students with autism

Courses by Autism New Zealand

Autism New Zealand is the supplier of the Ministry-funded programme to provide professional learning for people supporting autistic students.
Autism New Zealand website(external link)
Tilting the Seesaw for Teams is the name of the Autism New Zealand professional learning course. The course will educate teams of teachers, parents, whānau and other key support people in their understanding of autism. It also educates teams of people to work in partnership to develop skills and strategies to support learners with autism.

Tilting the Seesaw for Teams is a free two-day course. Contact Autism New Zealand for information about the course, and the course schedule.

Email info@autismnz.org.nz or free phone 0800 288 476.

The Incredible Years Autism programmes

The Incredible Years Autism programmes are part of a series of interlocking, evidence-based programmes for parents, children and teachers, supported by over 30 years of research.

The Incredible Years Autism is a 14-16 session programme for parents, and the Incredible Years Helping Children with Autism is a separate six-session programme for teachers of children aged 2-5 with autism. Together, they aim to promote children's emotional regulation, positive social interactions and language development.

Other helpful sources of information on Autism

The following links connect you to information and support from specialist, community and government organisations.

The Ministry of Education does not accept liability for the accuracy or content of information on these third party websites. When we link to other websites, that doesn't mean we endorse them. And when you visit those websites, their conditions and copyright policies apply.

Specialist and community organisations

Government organisations and information

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Supporting children and young people with autism

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Working with autistic children and students in schools. Links to more information.

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Resources from New Zealand - Online shop and online courses

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With over a decade of providing autism resources to New Zealand schools, ECEs and families of children with autism spectrum disorder, we offer a wide selection of books, visual timers and sensory products through our online store. 100% owned and operated in New Zealand, we pride ourselves in providing high quality products, exceptional customer service and fast shipping NZ wide.

NZ's Largest Range of Time Timers

Stocking New Zealand's largest range of Time Timer products especially suited for children and adults with ASD, selecting the best visual timer for an individual's needs has never been easier.

A Time Timer provides a visual way to judge how much time is left without the requirement of being able to tell the time. With high colour resolution, large dial numbers, and an ultra-quiet quartz movement, users can clearly see how much time they have left to start, complete or finish a task. Through better time awareness and management, users can experience increased independence, improved self-esteem and lower levels of stress and anxiety.

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With over a decade of providing autism resources to New Zealand schools, ECEs and families of children with autism spectrum disorder, we offer a wide selection of books, visual timers and sensory products through our online store. 100% owned and operated in New Zealand, we pride ourselves in providing high quality products, exceptional customer service and fast shipping NZ wide.

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Website

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Altogether Autism - Trusted autism information and advice

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Altogether Autism has a team of information officers and researchers with skills and experience in searching out current and proven information on all aspects of autism spectrum disorder. We provide information to families, professionals, people on the spectrum, and anyone with an interest in autism spectrum. Altogether Autism's information service is free and confidential.

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Website

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We've spent many years working with autistic people and the wider autism community to help support, inform, and educate. Let Autism New Zealand take every

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Neurodiversity - the key that unlocked my world  Elizabeth Wiklander.

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Neurodiversity - the key that unlocked my world  Elizabeth Wiklander.

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Building Knowledge - Video

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Neurodiversity – the key that unlocked my world | Elisabeth Wiklander | TEDxGöteborg

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The Forgotten History of Autism - Steve Silberman

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The Forgotten History of Autism - Steve Silberman

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Building Knowledge - Video

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Steve Silberman  The forgotten history of autism

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Autism as a Fruit Salad - Donna Williams

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Autism as a Fruit Salad - Donna Williams

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Building Knowledge - Video

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Autism as a Fruit Salad Model by Donna Williams

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Building Knowledge - Video

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My brain isn’t broken | Tashi Baiguerra | TEDxLondon