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World first Autism Spectrum guideline launched

Hon Chris Carter
Minister of Education

Hon David Cunliffe
Minister of Health

2 April 2008 Media Statement

World first Autism Spectrum guideline launched

Minister of Education Chris Carter and Minister of Health David Cunliffe today launched a comprehensive Autism Spectrum Disorder Guideline making New Zealand world leaders in this area.

Mr Cunliffe said World Autism Awareness Day was the perfect occasion for New Zealand to release its groundbreaking guidelines that aim to improve available support and services for those living with these disorders.

Minister of Education Chris Carter was unable to attend today’s launch but said the guideline provided an opportunity to build relationships across sectors to make a difference in the lives of people with by ASD.

“This Guideline is a key tool that will provide support to families and schools.

“It is a resource for schools to make sure they have access to information so that students with ASD receive the help they need,” Mr Carter said.

“The Guideline puts New Zealand at the forefront of information on ASD and will help helping people with ASD, their families, whanau, and service/support providers make sense of the wealth of research that’s out there,” Mr Cunliffe said.

The NZ Autism Spectrum Disorder Guideline is a joint project of the Ministries of Health and Education and is based on overseas and New Zealand evidence, experience and practice.

“It’s about getting better at recognising, treating and managing ASD and identifying gaps in services”

“We have allocated $18.16 million over four years to implement the recommendations of the new guideline.”

Mr Cunliffe encouraged parents and individuals with ASD to use the information in the guideline to get the best advice, support and care available.''

"I expect that health professionals, educators and support agencies will use the guideline to help them provide the best evidence informed care and support for people with ASD and their families.”

The guidelines are one of the first of its kind that cover the whole of life as well as health, education, disability, Maori and Pacific perspectives

”It takes us forward into the future where I hope people with ASD will be better supported as they make significant contributions to their own families, communities, and New Zealand.”

Autism Spectrum Disorder is a life-long developmental impairment that can affect the way a person communicates, their social interaction and behaviour.

It covers a range of conditions, including Aspergers Syndrome, and the difficulties experienced vary from person to person.

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Attachment: New Zealand Autism Spectrum Disorder Guideline Summary (PDF)

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FAQs for launch of NZ ASD Guideline

Developing the guideline

1. How did the guideline come about?
The Ministries of Health and Education initiated the guideline in September 2002 in response to recommendations in the Curry Report which reviewed autism services.

2. Why has it taken so long to get the guideline to publication?
The main reason is that the guideline is very comprehensive – it covers health, education and community settings, and takes a ‘whole of life’ approach. We needed substantial time to analyse and check the wide range of evidence, expertise and practice. This was essential to ensure that we are absolutely confident in the credibility of the information we included in the guideline.

The guideline also represents a groundbreaking collaborative initiative that involved a wide range of people, including those with ASD and their families and whānau, both within New Zealand and from overseas.

We allowed time for detailed consultation and to make the changes that resulted, including changing the guideline’s structure after feedback.

3. How was the guideline put together?
We set up three workstreams to develop the guideline: Assessment and Diagnosis; Education; Support and Transition. We also set up stakeholder reference groups to provide input into each workstream. We held hui and fono to seek Māori and Pacific peoples’ input, and we sought input from Pacific researchers.

4. Who had input into the guideline?
In December 2002, we established an ASD Guideline Steering Group to ensure a range of user perspectives were included in the development of the guideline. The group included adults with ASD, parents/families, the Royal Australia and New Zealand College of Psychiatrists, the Paediatric Society, disability provider organisations, Needs Assessment Service Coordination services, Child, Youth and Family, Pacific advisors, school principals, early intervention services.

Officials from the Ministries of Health (Disability Services, Māori Health Clinical Services and Mental Health directorates), Education (Special Education) and Child, Youth and Family were involved in the development of the guideline.

Once a draft guideline was developed, we sent it out for public consultation and received 108 submissions.

5. What overseas input was there?
The Diagnosis and initial assessment section of the guideline is based on the UK National Autism Plan for Children. In addition, we asked seven internationally acknowledged ASD experts to peer review the draft guideline.


6. What in the guideline was changed as a result of consultation?
We made a lot of changes as a result of the consultation and expert peer review feedback. These changes included the actual structure of the guideline, adding more research evidence, and rewording of some sections to make them clearer.

7. What happens now?
The New Zealand Guidelines Group has been awarded a contract to develop an implementation plan, The plan will be developed by the end of June 2008 and an implementation advisory group will be established.

Guideline content

8. Who is the guideline for?
The guideline includes information for people with ASD, health professionals, anyone involved in education, from early childhood to tertiary, community supporters, parents and grandparents, employers, policy advisers.

9. What points of interest does the guideline raise for health professionals?
The guideline reinforces:
 the need to identify children with autism spectrum disorders early in life. This is essential to enabling early interventions and to people functioning better in later life.
 that there is no cure for ASD.
 the need for parent’s enquiries regarding developmental concerns about their child to be taken seriously. The need to clearly identify pathways for them to access assessment (the guideline describes some of these pathways).
 multidisciplinary assessments through specialist ASD services as the best approach to improving diagnosis.
 the need for robust information on effective assessment and diagnosis processes for different age groups.
 the need for advice on effective assessment tools and the role of cognitive assessment when health professionals are assessing people suspected of having ASD.

10. What points of interest does the guideline raise for anyone involved in education, from early childhood to tertiary?
 The statement that it is unlikely that there will ever be a single approach or solution that will meet the needs of all learners with ASD. Teachers and special education providers need to choose approaches that fit the individual and their settings, and need to be skilled in providing a range of interventions.
 Teachers and specialist service providers should be aware that strategies need to be implemented across home, early childhood education, school and community settings if we are to achieve successful outcomes for children and young people with ASD.
 The guideline outlines three broad approaches upon which most overseas educational intervention programmes are based: discrete trial training (DTT); contemporary behavioural and developmental research findings; and developmental (social pragmatic) approaches. Some programmes include elements of all three. No one approach has been shown to be more effective than another.
 Anyone involved in education needs to be aware that current special education practice in NZ emphasises participation and development, rather than ‘fixing’ the child.
 That teaching children with ASD in isolated settings away from other children is not best practice. It is crucial that we support children and young people to use what they learn in more than one setting and we can best achieve this by working collaboratively with parents, teachers and peers.
 People providing services and support to children and young people with ASD must have a positive attitude, expertise in ASD, and the willingness to work in a team with the family.
 We should make services available so that a young child is appropriately engaged across a variety of home, educational and community settings in goal-directed activities for 15-25 hours per week (Note this does not mean that service providers have to be with the child for all of these hours, but others need to be supported to assist).
 We should be monitoring and evaluating interventions on an ongoing basis. We should make changes to an intervention if there is no evidence of progress within a few months.
 We should incorporate the principles of positive behaviour support into educational interventions, particularly with a focus on understanding the function of the child/young person’s behaviour.
 We should carefully plan all transitions, and carefully prepare the new environment.

11. What’s new about this guideline for people with ASD?
People with ASD will find the information for health professionals and those involved in education useful in working with these service providers. Not only that, but for the first time in the world, we have collated 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 NZ ASD Guideline recognises that people with ASD make significant contributions to society, rather than describing ASD in ways that medicalise the disorder, or view it as a disorder that has negative impacts.

12. What’s new about the guideline for parents?
We have bought together a single collection of evidence about effective support and services for people with ASD, from birth through to older age. Parents can use the evidence in the guideline to clarify your expectations and work with service professionals through all the stages of your children’s development.

13. How will the guideline be kept up-to-date with new research and evidence?
We are taking a ‘Living Guideline’ approach, using a process of continuously appraising new information and research. We will publish amendments and updates to the guideline on the Ministry of Health website. We will review the full guideline in 2013.


14. How long will it take to update the guideline when new research becomes available?
The ‘Living Guideline’ process is leading edge and so far has not been applied to ASD. We will develop details of the ‘Living Guideline’ process during 2008.

15. How will we know when the guideline has been updated?
You can register through the Ministry of Health website and we will notify you of changes to the guideline and other related information updates.

The impact of the guideline

16. What is the guideline intended to achieve?
Our intention is that the information in the guideline will help improve the advice, support, services and care for people with ASD, and their families. We expect to see health professionals, educators, policy advisers and employers using the guideline to inform your decisions about care and interventions. We hope parents and individuals with ASD will also use the information in the guideline to seek the best advice, support and care available.

17. Is there any intention to make the guideline compulsory? Why/why not?
Not at this stage.

18. What will be done to help health professionals and educators observe the information in guideline?
The Ministries of Health and Education will ask for evidence from service providers that the guideline has been used to design and deliver services for people with ASD, and their families/whānau. We will also make the guideline the base for all relevant service specifications and contracts.

19. What do you expect will change for people with ASD as a result of having this guideline?
People with ASD, families/whānau, health professionals, education providers and other interested parties will have improved access to consistent information. Recommendations will be priortised for ongoing service development a single source of credible and reliable information rather than competing, conflicting, and fragmented information, advice and approaches.

20. How will policy makers use the guideline?
Policy makers will use the guideline as the basis for reviewing existing policies and when developing new policies.

21. How do you expect educators and health professionals will use the guideline?
We are expecting them to know what’s in the guideline, use it, promote it, quote it, and expect to be asked by their clients how their advice matches with what’s in the guideline.

22. How do you expect parents and people with ASD will use the guideline?
We are encouraging parents and people with ASD to know what’s in the guideline, use it, promote it, quote it, and expect their professional service providers to provide them with advice and services that are consistent with what’s in the guideline.

23. What are the ministries doing to implement the recommendations in the guideline?
The New Zealand Guidelines Group has been awarded a contract to develop an implementation plan, The plan will be developed by the end of June 2008 and an implementation advisory group will be established.

24. What were the results of the Impact Analysis?
The impact analysis team identified some areas that need to be strengthened and these will be considered in our implementation planning.

Technical questions about the content of the guideline

25. What about those medications or therapies that are not in the guideline? Are you saying they won’t work?
We have only included medications, therapies and strategies in the guideline that have strong evidence to back up their effectiveness, or that are strongly supported by experts. We have also made comments about some interventions and treatments which have been proven not to work, or even cause harm.

If a medication, therapy, or approach is not in the guideline, it doesn’t mean that it will not work, but it is an indication that its effectiveness hasn’t been thoroughly researched or proven.

26. How did you decide what was sound evidence?
The workstreams appraised individual studies against a checklist used by the NZ Guidelines Group (a network of health and disability professionals and consumer representatives who have a common interest in the process of guidelines development and implementation). They also weighed up evidence according to the quality, consistency, applicability and clinical impact of all the studies that formed that body of evidence.

27. How did you decide what expert opinions to include, and what not to include, and how did you determine what was best practice?
All the workstreams used the processes recommended by the NZ Guidelines Group. Workstream one adapted the UK National Autism Plan for Children as the basis for their appraisal, while the other workstreams used broad evidence-based principles to guide the development of their sections.

The lists of practice questions and the resulting evidence tables are available at www.moh.govt.nz/autismspectrumdisorder

28. Why have applied behaviour analytic interventions (ABA) not been included in the guideline?
Through the consultation process, we received feedback that some research into ABA had not been included. We have started an independent review of the available research. We will update the guideline, if appropriate, once this review has been completed towards the end of 2008.

29. What other treatments were not included 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 medication for people with ASD. The guideline includes some information on some of the alternative treatments for ASD, it has not covered them all.

30. What does the guideline say about immunisation?
All children should be fully immunised, including the MMR vaccine (Measles, Mumps and Rubella) according to the NZ immunisation schedule. There is no scientific evidence to support the view that this vaccine has a role in causing ASD.

31. What main issues do people need to be aware of when working with Māori and Pacific people with ASD, and their families/whānau?
When working with people with ASD who identify as Māori, 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.

32. If the information in the guideline contradicts advice I’m being given, or information I’ve received from other sources, who can I talk to about it?
Make contact with us through the ASD 0800 number (0800 ASD 222) or email (asdguideline@moh.govt.nz). These are NOT help services, but we will find people who can answer your queries.

33. How does the guideline relate to the Service Standards which are used by specialist education professionals?
The guideline complements the Ministry of Education Service Standards which have been developed to ensure all children and young people with special education needs receive a consistent quality specialist service. The Service Standards were developed collaboratively by parents, students, specialist service providers and educators from their knowledge and experience.

Funding and promotion

34. How much additional funding has been allocated to services for people with ASD and their families?
$18.16 million from Vote:Health, spread over the next four years from the Ministry of Health. The Ministry of Education has $1.5 million per year for research, evaluation, professional learning, and information sharing about ASD.

35. What will this money be used for?
Our initial priority is to scale up existing programmes and services that are proven to be of benefit. I

36. Will everything in the guideline be funded by the government to happen?
Key recommendations will be prioritised within the existing budget.

37. Will the release of the guideline result in more funding for NGOs supporting people with ASD?
The funding will be allocated to services that meet the key recommendations.

38. The guideline is very technical. What are the ministries doing to help translate it for the lay person?
Over the next six months, we will be developing tips and tools for parents, teachers and health professionals. We will involve parents, teachers and health service providers in developing these resources.

39. What are the ministries doing to make sure health professionals, dentists, teachers, and so on know about what’s in the guideline, and follow the guideline?
We plan a direct mail to a range of professional individuals and groups.

We will deliver presentations and workshops about what’s in the guideline to professional conferences around the country.

We will also run workshops from September this year for parents, health professionals, DHBs, teachers and Ministry of Education, Special Education staff. Training modules/credits will be developed as part of the annual professional development of practice nurses and GPs.


ENDS

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