Frequently asked questions

 

  • What about those medications or therapies that are not in the guideline? Are you saying they won’t work?

    • 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. 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. 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 is an indication that its effectiveness hasn’t been thoroughly researched or proven.

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  • 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.

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  • 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; and 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.

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  • 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 that 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.

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  • Who is the guideline for?

    • The guideline is for people with ASD, parents and grandparents, health professionals, community supporters, employers, policy advisers and anyone involved in education – from early childhood to tertiary.

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  • Why is this guideline important?

    • The guideline intends to assist people who are improving the lives of individuals with ASD. It 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 as something negative.

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  • What do you expect will change for people with ASD, their supporters and carers, as a result of this guideline?

    • By itself, the guideline achieves nothing. But without it, people would not have a standard by which they can measure their actions in relation to people with ASD. Without it, individuals with ASD and their supporters, do not have a standard against which they can hold the actions of professionals. We expect people to use it to improve the lives of 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 expect professionals to use it to improve their practice, their communication and their relationships with people with ASD. We are prioritising specific recommendations where government involvement is useful – in other words, the guideline is underpinning policy and funding decisions.

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  • What points of interest does the guideline raise for health professionals?

    • The guideline reinforces the need to identify children with ASD early in life. This is essential to enabling early interventions and to people functioning better in later life. It also reinforces that there is no cure for ASD. The need for a parent’s enquiries regarding developmental concerns about their child is to be taken seriously. The need to clearly identify pathways for people with ASD to access assessment (the guideline describes some of these pathways) and multidisciplinary assessments through specialist ASD services is considered the best approach to improving diagnosis. The need for robust information on effective assessment and diagnosis processes for different age groups is also considered important. Further emphases are the need for advice on effective assessment tools and the role of cognitive assessment when health professionals are assessing people suspected of having ASD.

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  • What points of interest does the guideline raise for anyone involved in education, from early childhood to tertiary?

    • The following points should be of interest to people involved in the education sector:

    1) 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;

    2) teachers and specialist service providers should be aware that strategies need to be implemented right across home, early childhood education, school and community settings if we are to achieve successful outcomes for children and young people with ASD;

    3) the guideline outlines three broad approaches upon which most overseas educational intervention programmes are based: discreet 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;

    4) anyone involved in education needs to be aware that current special education practice in NZ emphasises participation and development, rather than ‘fixing’ the child Fifth, 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

    5) 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

    6) 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 is a collective responsibility and will involve families, early childhood education services, early intervention services (including education support workers) and community services. This recommendation in the Guideline does not mean that specialist service providers have to be with the child for all of these hours, but they need to support others to contribute in accordance with an agreed plan;

    7) 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;

    8) 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; and

    9) we should carefully plan all transitions, and carefully prepare the new environment.

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  • What does ‘guideline implementation’ mean?

    • Guidelines are recommendations that have supporting information written around them. Evidence-based guidelines are recommendations that are supported by evidence. Implementing a guideline is really about putting recommendations into practice. It is about changing the way things are currently done, so that they are done in the best way possible, as suggested by evidence.

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  • Why do we implement guidelines?

    • We implement guidelines because if they are not implemented, there is a strong likelihood that things won’t improve.

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  • Is there any intention to make the guideline compulsory? Why or why not?

    • Guidelines cannot replace the judgments that people need to make when faced with individual circumstances. For this reason, it can be unsafe to make guideline recommendations compulsory. Having said that, the recommendations will influence the way ASD services are purchased by the government and DHBs in the future.

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  • Who is responsible for guideline implementation?

    • Each recommendation is different. Implementation will be specific to that recommendation. Therefore, responsibility sits with different people. For example, a recommendation for the national use of a particular therapy may require new people, training, additional funding and changes to the way people work. That sort of change requires a lot of people to take on responsibility for implementing the recommendation. Alternatively, a recommendation about information sharing may place responsibility on the government to provide access to the information, but will place a lot of personal responsibility on individuals to share information across their networks.

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  • What is being done to implement this guideline?

    • We do not know of all of the local activities that are being undertaken to implement parts of the guideline. If you wish to share them, we will ensure they go into our quarterly newsletter. This newsletter is coordinated by the New Zealand Guidelines Group, so you can provide them with information at asd@nzgg.org.nz The newsletter can be found on the Ministry of Health’s website. A link is also provided on the Community page on this website. Cabinet approved an implementation plan that gives ongoing funding to effective services that are currently being piloted, and sharpened the focus of existing service providers onto ASD services. Additionally, some funding is available to set up and evaluate a small number of new pilot services. The national activities are overseen by the Ministries of Health and Education and have been underway since the guideline was published. For information, please refer to the newsletter. As at December 2009, national activity has focused on: respite services, behaviour support services, coordination services, and information and training/education services. The Ministry of Education has focused its implementation effort on workforce development. For more on their project, refer to the newsletter. The implementation of the guideline is only one response to the 2002 Curry Report. Other activities that affect people with experience of autism are taking place across government and are coordinated by a group of senior officials. The Ministry of Health, for example, is working on the disability support workforce, as well as wider reviews of respite and behavioural support services.

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  • What is being done to ensure that the guideline always remains relevant and implementation activity does not end?

    • As part of guideline implementation, the Ministries of Health and Education have committed to a rolling programme of updates to the guideline. This is called a ‘living guideline’ process. A group of people from the sector who are familiar with evidence-based research has been established to support this process. The living guideline process does not add new topic areas to the guideline. For example, the guideline does not deal with issues of sexuality. If new topics need to be added, then this will be done by a different process. The reason for this is that a living guideline process is one that updates the guideline in its current form. It takes the evidence on a topic already in the guideline and updates it. New topics need a fuller review of the evidence and completely new text. A living guideline process can result in: a. no change to a guideline’s recommendations b. a change in a recommendation c. a deletion of a recommendation d. the addition of a recommendation. The decisions are made by the group of experts on reading and debating the evidence. If changes are made, they will be written up and published on the Ministry’s website. People will be alerted via the communications channels that the Ministry has set up with the ASD community. The first topic being addressed by the living guideline process is applied behavioural analysis (ABA). At first glance, ABA does not appear within the guideline. This is primarily because it is a suite of interventions, and the guideline tends to deal with the interventions and not the suite. So there are, in fact, over 20 recommendations that deal with ABA in one way or another, but without specifically using the term ‘ABA’. In addition to the living guideline process, there is a group of people from the sector who are keeping an eye on the overall implementation. They are known as the Implementation Advisory Group. Since 2008, they have advised the New Zealand Guidelines Group and the Ministries of Health and Education on the progress toward implementing the guideline using the new government funding. From 2010, their focus will widen beyond funding and implementation to advising the Ministries more broadly on ASD issues.

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  • How much additional funding has been allocated to services for people with ASD and their families?

    • $17.5 million from Vote:Health, spread over four years (starting in the 2007/08 financial year) 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. The level of additional funding may seem relatively large, but it is spread over 3.5 years. When funding is allocated to a service on a long-term basis it reduces the amount of new funding that is available in subsequent years. This means that it is impossible for government to fund all guideline recommendations. A sector-based implementation advisory group provided advice on prioritising the recommendations, with the final decision being made by the Ministry of Health (in consultation with the Ministries of Education and Social Development).

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  • Will everything in the guideline be funded by the government to happen?

    • No. Many of the recommendations relate to the way people behave with one another, and modifying that cannot easily be achieved through government funding. Government funding will be targeted toward guideline recommendations that need government involvement to succeed. If there are too many of these, then the recommendations will be prioritised.

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  • 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 your general practitioner (GP) or Altogether Autism, which is the organisation charged with providing ASD information to the sector by the Ministry of Health (www.altogetherautism.org.nz).

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  • I am a webmaster of an education website. How can I establish a link to the ASD website?

    • We encourage other organisations to link to the website. Email asd@nzgg.org.nz for a logo or personal assistance.

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  • Who runs and funds the website?

    • The New Zealand Guidelines Group has independently developed the website and eResources, with funding from the Ministry of Health.

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