Information about the New Zealand Autism Spectrum Disorder Guideline.
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Who is the Guideline for?
The Guideline is for people with ASD, their family or whānau, health professionals, community supporters, employers, policy advisers and anyone involved in education – from early childhood to tertiary.
Why is the Guideline important?
The Guideline is an opportunity to better understand how best to support people with autism spectrum disorder (ASD) and their families. It also provides a framework to improve services for people with ASD, based on robust and reliable information.
The Guideline collates the best available information about effective ways to support people with ASD into one volume. You do not have to seek out information from multiple sources, nor try to make sense of sometimes conflicting claims.
The Guideline recognises that people with ASD make significant contributions to society, rather than describing ASD in ways that medicalise it or view it negatively.
The Guideline has had input from individuals with ASD, parents of children with ASD, medical, educational and community providers, government agencies, and New Zealand and overseas researchers. It represents a ground breaking collaborative effort and a significant achievement by all contributors.
The new edition of the Guideline
The Guideline is the world’s first living guideline in this area to acknowledge the whole of a person’s life – from early intervention and diagnosis, to community living for adults.
Being a living guideline means there are regular updates for topics where new, significant research has emerged. Every year since 2009, a topic for update has been identified and the new evidence critically reviewed. This review is then considered by a small advisory panel to inform the revision and development of new recommendations.
The 2nd edition of the guideline, released in August 2016, incorporates the panel’s updated recommendations and the rationale for each of the seven completed update topics. Future updates from the living guideline process will be posted in this section.
By regularly updating the Guideline it can be more responsive to the needs of the people it has been written for, ensuring it has real meaning to those who use it.
Medications or therapies that are not in the Guideline
The Guideline does not claim to cover every intervention related to ASD. There is very little information on the long-term consequences (including safety) of using a range of medications for people with ASD. The Guideline only includes medications, therapies and strategies that have strong evidence to back up their effectiveness, or that are strongly supported by experts. It also includes comments about some interventions and treatments which have been proven not to work, or even to cause harm.
The Guideline includes some information on some of the alternative treatments for ASD, but it has not covered them all. If a medication, therapy, or approach is not in the Guideline, it doesn’t mean that it will not work – but it does indicate that its effectiveness hasn’t been thoroughly researched or proven.
An update on the use of aripiprazone, citalopram and melatonin was conducted through the living guideline process. Resulting revised recommendations are incorporated into the Guideline’s 2nd edition. See the full Supplementary Paper on this update.
All children should be fully immunised according to the NZ immunisation schedule, including the MMR vaccine (measles, mumps and rubella). There is no scientific evidence to support the view that this vaccine has a role in causing ASD.
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 general practitioner (GP) or
- Altogether Autism, the organisation that provides ASD information to the sector on behalf of the Ministry of Health.
Working with Māori and Pacific people
When working with people with ASD 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 ASD in a culturally appropriate format
- develop a strategy to improve the cultural competency of the mainstream workforce to acquire knowledge and understanding of Pacific cultural values and world views and appropriately apply this to their work.
Ministry of Eduction Service Standards and the Guideline
The guideline complements the Ministry of Education Service Standards. These standards were developed to ensure children and young people with special education needs receive a consistent quality specialist service. The standards were developed collaboratively by parents, students, specialist service providers and educators from their knowledge and experience.
Our expectations for the Guideline
The Guideline provides a standard for service providers to hold themselves up to in their interactions with people on the autism spectrum, as well as a standard for autistic people and their supporters to measure the actions of professionals against.
We expect people to use it to improve the lives of people with ASD. We expect professionals to use it to improve their practice, their communication and their relationships with people with ASD. We expect people with ASD and their supporters will use it to keep themselves up to date about ASD within the New Zealand context.
We are also prioritising specific recommendations where government involvement is useful – in other words the guideline is underpinning policy and funding decisions. See Implementing the Guideline to find out more.
Note that the Ministry of Health’s clarification of eligibility for people with ASD has meant that since April 2014 people with ASD have been able to access Disability Support Services. The Ministries of Health and Education have also been working together to ensure that people with ASD and their families receive a coordinated services.