World Autism Day 2 April
Thursday 2 April was World Autism DayÂ
President Obama didn’t forget World Autism Awareness Day and his office sent out this message
 Hello,
Kareem Dale, Special Assistant to the President for Disability Policy,
advised me to send you the following attachments.
Thank you for all that you do,
Matt Tranchin
The White House
Office of Public Liaison
March 30, 2009
It is with profound commitment to Americans with Autism Spectrum Disorders (ASD), their families, and their communities that I join in celebrating World Autism Day. We celebrate the contributions of individuals with autism, their families and self advocates across the World.
We must build a world free of unnecessary barriers, stereotypes, and discrimination. Policies must be developed, attitudes must be shaped, and we must ensure that everyone has the chance to live independently as full citizens in their communities. For too long, the needs of people and families living with autism have gone unrecognized and underappreciated. That is why my Administration supports increased funding for autism research, treatment, screenings, public awareness, and services for ASD. We must also remember that children with autism become adults with autism who deserve our support, our respect and the opportunity to fulfill their potential.
           As we celebrate World Autism Day, let us recommit ourselves to this cause and to the responsibility we have to support those with ASD and their families.Â
Barack Obama
Â
In New Zealand an update to the ASD Guideline was sent out
Information backgrounder for
Altogether Autism
Purpose: Information for World Autism Awareness Day. To be distributed to sector networks
Helping make sense of a complex world.
About the guideline
·        The guideline is a single, credible source of overseas and
·        We expect the information in the guideline will help improve the advice, support, services and care for people with ASD, and their families/whÄnau. We expect to see health professionals, educators, policy advisers and employers using the guideline to inform their 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.
·        The guideline was developed collaboratively with input from international and
·        One guideline; whole person; whole of life; everyone’s responsibility.
The guideline is one of the first of its kind in the world covering the whole person through their lifetime. Other countries are looking to us as a model.
About ASD
Autism Spectrum Disorder (ASD) is a life-long developmental disability that can affect the way a person communicates and interacts socially with other people. It is thought to affect more than 40,000 New Zealanders. People with ASD often use apparently rigid rules to make sense of the world. These rules are logical to the person with ASD, but may conflict with common social conventions and interactions.
ASD has been described as a ‘hidden’ disability that affects every aspect of a person’s day-to-day life, including how well they are included socially. Each person with ASD has a unique range of abilities and needs. The form and severity and impact of ASD can vary, depending on the context and the person’s emotional state. However, everyone who has ASD shares some difficulty in making sense of their world, including:
§        understanding and using verbal and non-verbal communication
§        understanding social behaviour, which affects their ability to interact with other people
§        thinking and behaving flexibly – their approaches may be interpreted as restricted, obsessive or repetitive.
Some people with ASD need significant support with everyday tasks, while others need limited support. Families/whÄnau may experience high levels of stress in caring for children with ASD who can have communication and behaviour challenges. Despite the challenges experienced by people with ASD and their families/whÄnau, they can, and do, make a valuable contribution to society.
Since its first description over 50 years ago, ASD has been the subject of intense research and a great deal more is now understood about the condition, although there is no known ‘cure’.
The human stories behind ASD
“Mum knew I was different from the day I was born. I never learnt to crawl and began walking at 22 months of age. Many sounds and most unfamiliar things terrified me.
I could only focus on one thing at once which meant I could not multi-task. My mental processing speeds tended to be slower. When a change occurred in my routines or in my environment, I could not cope. I hated touching sticky substances and still do. So I was the child at playcentre who wouldn’t touch the finger paints! However, I soon began showing above average ability in reading and writing.
Now most of these features, together with many others, were long lasting well into adulthood. However, at the time when I was born 52 years ago, there was nobody around who could put these clues together. I ended up in a psychiatric hospital, once for 8 months, but still without the correct assessment of my symptoms being made. In fact, some incorrect diagnoses were made, for example atypical schizophrenia. This scenario is still going on for some other adults in
Jen Birch,
“After many years of not being able to have children, we followed the path of adoption and we were ever so lucky to adopt Elliot right from birth. He’s just such a joy, he’s just all that we longed for. We love him dearly. And even if he is autistic, it just doesn’t matter at all, he’s our boy, he’s fabulous.
“I’m one of the lucky parents in the autism community. I had a supportive family. No-one took my child off me and placed him in an institution and told me to forget about him. No-one told me he couldn’t attend their school. No-one asked me to pay for a teacher aide. And neither was he asked to leave school because they didn’t understand autism. No-one said his behaviour was ‘too difficult for respite care’. No-one said he was too disabled for a job, for independent living, to be treated as a human being with feelings, hopes and dreams. No-one said it was all my fault.â€
Hilary Stace,
“A lot of us do notice a lot of detail. That is a typical feature of
Jen Birch,
“Ah, things I’m great at. I love – I mean I can write formally very well. So, for example, that’s extremely useful when you’re writing formal pieces of writing like submissions, where there’s a certain style. The other thing that I feel I’m good at is things like you know chairing meetings. You know, I’m chairing two or three groups now. And one of the things I’d say about that is that I think having
Matt Frost,
About the guideline
·        One guideline; whole person; whole of life; everyone’s responsibility.
·        The guideline helps make sense of a complex world.
·        The guideline is a single, credible source of overseas and
·        We expect that the information in the guideline will help improve the advice, support, services and care for people with ASD, and their families.
·        The guideline was put together with input from international and
·        Know what’s in it, use it, promote it, quote it, and expect to be asked by your clients how your advice matches with what’s in the guideline.
What the Guideline tells us about effective interventions for children and young people with ASD
“No one model has been shown to meet the needs of all children and young people with ASD. All the models have something to offer in certain situations. The skill of the professional is knowing when to use which model to meet the needs of particular children, situations and skills.†(NZ ASD Guideline, page 90).
The characteristics of effective interventions have been identified as:
·       making the earliest possible start to intervention
·       individualising services for children and families and whÄnau
·       providing systematic ‘planful’ teaching
·       providing a curriculum to meet the need of the young child with ASD
·       intensity of engagement of the child
·       sustainable family involvement
·       structured environments
·       developmentally appropriate practices
·       intervention in natural environments and with access to typically developing children
(NZ ASD Guideline, pages 91 – 93).
What happens next – promoting the guideline and implementing the recommendations
The Ministries of Health and Education are committed to implementing the NZ ASD Guideline – we know this will take time but we are in this for the long haul. Implementing the recommendations in the NZ ASD Guideline is everyone’s responsibility.
Following the launch of the NZ ASD Guideline, 11,000 copies of the NZ ASD Guideline publications have been distributed, and health, education and disability groups have met to consider the implications of the Guideline for their work.
The NZ Guidelines Group (NZGG) has been contracted to manage the technical implementation of the Guideline, using the implementation funding provided to the Ministry of Health. NZGG has established an Implementation Advisory Group, which includes leading representation by people with ASD, parents of people with ASD, and from across health, mental health, disability and education services. The group is chaired by Matt Frost, who identifies as being a person with ASD, and has provided invaluable advice on priorities for implementing the Guideline.
The leadership and commitment shown by people with ASD at the launch of the Guideline continues and is invaluable in guiding the work programmes of the Ministries of Health and Education.
In November 2008, Cabinet approved the joint Health-Education Guideline Implementation Plan. Since then, the focus has been on scaling up existing, proven programmes while also preparing for new services. Work is well advanced on: developing a handbook on assessment and diagnosis for health and education professionals; on designing ASD-specific parent education; designing ASD-specific respite services and exploring the feasibility of ASD-specific behaviour support services.
Regular updates on implementing the NZ ASD Guideline are provided at http://www.moh.govt.nz/moh.nsf/indexmh/disability-keyprojects-asd-guideline-updates
About World Autism Awareness Day
It is estimated that around 35 million people worldwide have
Contacts
For health and disability-related queries
Lester Mundell
Chief Advisor (Disability Services) & Director IDCC&R
Health & Disability National Services Directorate
Ministry of Health
Phone: 04 496 2371
Pat Tuohy
Chief Advisor – Child and Youth Health
Ministry of Health
Phone: 04 496 2373; 021 313124
For education-related queries
Team Leader Research
Professional Practice
Ministry of Education
Phone: 04 463 8260; 027-432 2571
Organisations representing people with autism and their families
Autism
Phone 0800 AUTISM (288 476), or (03) 339 2627
Altogether Autism
0800 ASD INFO / 0800 273 463
The Ministry of Health sent out an ASD newsletter
http://www.moh.govt.nz/moh.nsf/pagesmh/8594/$File/asd-newsletter-mar09.pdf
Autism Spectrum Disorder March 2009
It is a year since the launch of the NZ Autism Spectrum Disorder (ASD) Guideline. Significant
progress has been made to meet Richard Belton’s (CEO of Autism New Zealand) challenge to
‘make a difference’ to all those who attended the launch of the Guideline. Richard proposed we
meet to review progress within a year.
This newsletter brings together information about the progress being made to improve autism
services for people in New Zealand from some of the key groups who have been involved, and
their updates or links to updates are included in this newsletter.
These groups include:
1) Ministry of Health
2) Ministry of Education
3) New Zealand Guidelines Group and the Implementation Advisory Group
4) Altogether Autism
5) Autism New Zealand
1) News from the Ministry of Health
ï‚· Cabinet approved the ASD implementation plan and the Ministries of Health and Education
have been working with the New Zealand Guidelines Group (NZGG) to purchase services to
meet the requirements of the implementation plan within the broad priorities set by the
Implementation Advisory Group (IAG).
ï‚· We are pleased to announce that the Ministry of Health has made progress against the
implementation plan in the key areas for development. The key four areas include;
1) Assessment and Diagnosis
2) Support to strengthen families
3) Interventions (including early intervention and behaviour support to strengthen
families, and transitions)
4) Respite
Improving co-ordination and developing the workforce flows through all of the above priorities.
The Technical Implementation Group, led by the New Zealand Guidelines Group have been
contracted to support the implementation process in three key areas. These are:
i. Working with the Implementation Advisory Group
ii. The Living Guideline
iii. Contributing to the management of the Implementation Plan
Working with the implementation advisory group
The Ministries of Health and Education continue to appreciate the work of the Implementation
Advisory Group. Leadership from across the ASD sector was visible at the launch of the NZ
(ASD) Guideline and the strength of this commitment has continued throughout.
The Living Guideline
ï‚· Living Guideline
The Ministry of Health and Ministry of Education have appointed the New Zealand Guidelines
Group (NZGG) to help implement the recommendations in the guideline. Part of NZGG’s work
Disability Support Services
includes putting in place a process for updating areas of the guideline which are no longer
current. This process is called a “Living Guideline Processâ€.
NZGG will get support by establishing a Living Guideline Working Group who will give advice on
which areas of the guideline are no longer current. Any changes will be based on changes in
evidence, as published in research literature.
Implementation Plan
This newsletter will highlight activities to date under the heading of the first phase of service
development planned to implement this funding. This phase is called ‘Scaling up existing, proven
programmes and services’.
Planning is in progress to implement the second and third phases of the implementation plan in
the following areas. These include;
 Bringing on stream new initiatives and embarking on ‘investment’ activities
 Delivering on the ‘investment’ activities, consolidating initiatives and incorporating measures
to provide for sustainability
Scaling up existing, proven programmes and services
1) Assessment and Diagnosis
ï‚· Development of ASD Recognition, Referral and Diagnosis Handbook
The New Zealand Guidelines Group is developing a resource that focuses on recognition,
referral and diagnosis of ASD. This resource will target a wide range of both specialist and
generalist professionals and address all age groups. The delivery of the content of these
resources is the 30 June 2009.
ï‚· Autism Spectrum Disorder Training package for Specialists
A complementary resource is being developed by the Werry Centre for Child and Adolescent
Mental Health (“the Werry Centreâ€) which will target specialists in both health and education
sectors, will focus on 0-18 age group, and will include training on ongoing support and
management of people with ASD (ie beyond initial diagnosis). They are well underway to
completing a training package that includes assessment and diagnosis of ASD, treatment of
ASD and clinical team leadership.
The training tool-kit is intended to inform specialists working in ASD, particularly child and
adolescent psychiatrists, paediatricians, and clinical psychologists and educational psychologists
about latest evidence as per the NZ ASD Guideline. The final draft is due to the Ministry of
Health by 31 March 2009.
ï‚· Autism New Zealand contract for resources for Home and Community Support Providers
The Ministry of Health, through Disability Support Services (DSS) has contracted Autism New
Zealand to scope, plan, and develop the Autism Spectrum Disorder (ASD) specific resources for
ASD Home and Community Support Providers. Home and Community Support Providers
contracted by the Ministry of Health, Disability Services, provide home based care and support
to people with disabilities including those with ASD under the age of 65.
ï‚· Needs Assessment Service Co-ordination (NASC) ASD Service Enhancement Programme
The Association of Needs Assessment and Service Coordination Agencies New Zealand
(NASCA NZ) has started managing 4 discrete projects within the ASD NASC Work programme.
The four specific projects aim to support and improve the efficiency, effectiveness and quality
delivery of NASC organisations and, ultimately, improved support outcomes for people with ASD
and their families, whanau, aiga and carers, as well as the community whom NASCs serve.
NASCA NZ is contracted to four individual projects to complete the following activities:
The four specific projects are;
i. Review/revision of core NASC Standards, Protocols, Guidelines and Practice Resources
ii. Development of a guideline specifically for Ministry contracted NASC to guide all aspects
of their contracted and professional work with people with ASD and their families,
whanau, aiga and carers
iii. New resources and tools required to deliver NASC services based on the Development
of ASD Specific Guideline for NASC and revised NASC Standards/Guidelines
iv. Explore, propose for implementation, and evaluate innovative options to establish a
NASC ASD coordination function to service Ministry of Health NASC throughout New
Zealand.
For any further information please contact Adri Isbister at 0800 008 011
The diagram below visually depicts the range of work presently contracted to increase skills in
recognition diagnosis and assessment of Autism Spectrum Disorder.
2 0 0 8 / 2 0 0 9
ASD Projects related to resource development and co-ordination roles within
Implementation Plan
Werry Centre Resources assessment and diagnosis for specialists (0 – 19 years)
NZ Guidelines Resource for allied health primary care on assessment & diagnosis
Group Resources assessment and diagnosis for specialists (Adults)
Autism New
Zealand
Scope, plan, and develop the Autism Spectrum Disorder (ASD) specific
resources for ASD Service and Home and Community Support Providers.
Review core NASC Standards and Protocols
Develop ASD specific Guideline for NASC
Develop NASC resources
NASCA
Development of a NASC ASD Coordination function
2) Support to strengthen families
ï‚· SPELL evaluation
One part of the implementation plan is to evaluate the SPELL training programme that is
provided by Autism NZ. SPELL training gives families and carers the opportunity to further
develop their understanding of ASD. Kiwikiwi Research and Evaluation Services have nearly
completed this evaluation that is to be presented to the Ministry of Health and the final draft will
be delivered in April 2009.
ï‚· Bright Sparks
Following the evaluation of Bright Sparks; an Auckland community-based recreational based
programme for children with ASD, the Ministry has contributed to one-off funding to respond to
recommendations contained within the report.
Further enhancements to the programme include a training programme for the induction and
ongoing development of staff, quality and programme documentation and increasing the access
of the programme to Maori and Pacific children and young people and their whanau and aiga.
The work will be completed by 30 June 2009.
 ‘tips for autism’
The Ministry of Health wishes to expand and enhance an existing, proven, professional learning
and development programme already supported and funded by the Ministry of Education – ‘tips
for autism’.
‘tips for autism’ is a course where a team of people dedicates four days to developing
interventions and plans to support their particular child with ASD. This programme is evidencebased,
not prescriptive, and is based on facilitated learning rather than lecturing. There is plenty
of opportunity for discussion and practical application of what is learned. Resource material is
available at different levels and individualised to meet the needs of different children’s strengths
and interests.
ï‚· ASD-specific parent education: jointly purchased by the Ministries of Health and Education
Evidence cited in the NZ ASD Guideline shows that parents highly value parent education
services. For nearly a decade, the Ministries of Health and Education have jointly contracted
Autism NZ to provide ASD-specific parent education, using the EarlyBird programme developed
in Britain. The ministries also funded an independent evaluation of EarlyBird. With the
information from the NZ ASD Guideline, the evaluation and the requirements on government
agencies to use open purchasing processes, the two ministries have sought proposals for the
next stage in providing ASD-specific parent education that is a good fit with New Zealand’s
unique culture and geography. The new purchasing processes are underway and the ministries
plan for the service(s) to be in place from 1 July 2009.
3) Interventions (including early intervention and behaviour support to strengthen
families, and transitions)
ï‚· Feasibility Study for ASD specific Behaviour Support Services
Bennett and Bijoux are contracted to determine the feasibility of providing ASD-specific
behaviour support services as they would apply in a New Zealand context. Bennett and Bijoux
are working with a Specialist Advisory Group to support them to complete this contract by the
end of June 2009.
ï‚· Auckland based Family and Whanau community outreach services
The Ministry of Health has tendered to provide this service on an ongoing basis. The service will
be provided for individuals (0-21 years) with ASD and their families and whanau. The purpose of
the service is to work alongside families to link with and access services and supports. The
service also aims to improve access by Mäori, Pacific and other cultural groups to ASD related
services.
The Service provided will be in addition to needs assessment and service co-ordination (NASC)
and the disability information and advisory services (DIAS). The key difference will be the
emphasis on getting involved as early as possible and a higher intensity of service provided e.g.
home visiting.
The Service will promote and actively encourage and facilitate cross sector and multi-disciplinary
collaboration with children and young people referred to the service and their families.
ï‚· Auckland based ASD specific communication and behaviour services
One of the proven services is communication and behaviour support services for people with
ASD. This service was piloted in the Auckland Region in 2005 and 2006 and evaluated by the
Donald Beasley Institute with positive outcomes. The Ministry has tendered to purchase the
service on an ongoing basis and contract negotiations are underway.
4) Respite
An investment of $1 million per annum over the next three years is allocated from ASD
implementation funding to contribute to the Ministry of Health requested proposals for new “out
of family” respite services. The Ministry has now signed contracts for the five following services:
i. Waikato service for people 17 years of age and over with an intellectual disability and/or
ASD – Spectrum Care Trust
ii. Bay of Plenty/Lakes (to be located in Tauranga) service for people 17 years of age and
over with an intellectual disability and/or ASD – Spectrum Care Trust
iii. Bay of Plenty/Lakes (to be located in Tauranga) service for people under 17 years of age
with an intellectual disability and/or ASD – The Open Home Foundation
iv. Hawke’s Bay service for people under 17 years of age with an intellectual disability
and/or ASD – The Open Home Foundation
v. Wellington service for people under 17 years of age with an intellectual disability and/or
ASD – The Open Home Foundation
These services are currently in set-up phase. The purchase proposal process is not complete
and contracts for the provision of other services may be signed in other areas in the future.
Respite continues to be an important area of priority.
ï‚· Develop other respite models
The New Zealand Guidelines Group is working with the Implementation Advisory Group to
deliver a report on the principles that should underpin ASD-specific respite models. This will be
followed up with a service specification and request for proposal for services that would meet
those principles.
2) Ministry of Education
As part of the Ministry of Education contribution to implementing the NZ ASD Guideline, a draft
education ASD Action Plan is being developed. The Plan responds to recommendation 6.24 in
the NZ ASD Guideline: “The development of a coordinated national plan for professional
learning and development should be undertaken. This should include standards for professional
learning and development and competencies for professional roles.†It also addresses Guideline
recommendations 6.6 – 6.7, 6.9 – 6.14, 6.16 – 6.23 and 6.27, as well as embarking on
developing the information and resources which need to accompany professional learning and
development.
The draft ASD Action Plan stresses the need for activities to be connected and coherent. It
affirms that everyone has a role to play in supporting children and young people with ASD to
learn, achieve and contribute to society, and outlines support for these roles. Over the next few
months, feedback on the draft Plan will be sought from people with ASD, parents, whÄnau and
other educators, including the Implementation Advisory Group. In the meantime, existing
commitments such as ‘tips for autism’ and the Early Intervention ASD Project continue to be
expanded to reach more young people, their families, whÄnau and wider support teams.
3) New Zealand Guidelines Group and the Implementation Advisory
Group
As written above, the New Zealand Guidelines Group (NZGG) and its consortium partners
(Matthew Frost and Acqumen Ltd) are reasonably involved in administering aspects of guideline
implementation. We:
ï‚· have administered a range of tender processes;
ï‚· are working on the assessment and diagnosis handbook (with an external reference
group and Tanya Breen and Richard Belton)
ï‚· are starting up the living guideline process (sponsored by the Ministry of Education)
ï‚· working with the Implementation Advisory Group to consider the principles to underpin
ASD-specific respite services and the feasibility of ASD-specific behaviour support
services (building off the work to be completed by Bennett and Bijoux Ltd).
For more information, please follow this link to a letter from the Chair of the Implementation
Advisory Group, Matt Frost.
http://www.nzgg.org.nz/download/files/ASDTechnicalInformationService-2.pdf
4) Altogether Autism
Altogether Autism is busy ensuring a comprehensive specialist information service is
being delivered nation wide. The first year of service delivery has bought its
challenges. Numbers accessing the service in many cases more than doubled. The
point of difference in this specialist information service is the access to a
professional expert group led by Tanya Breen. This ensures quality information and
specialist contribution to regional meetings and information on the web site.
LIFE Unlimited and Parent to Parent, the organisations partnered to provide the
information service Altogether Autism, have been strategically planning regarding
regional positions for Altogether Autism. It is the intention to look at re modelling
the regional service; an innovative approach to re modelling is being announced at
the end of March.
Some noticesÂ
Just a few days left to apply for the job of CEO of Autism NZ.
 http://www.seek.co.nz/users/apply/index.ascx?Sequence=75&PageNumber=1&JobID=15116033
FUNRUN
The Canterbury Branch of Autism NZ has a fun run and awareness fundraiser on Saturday 3 May in Hagley Park. Details below
http://www.fundraiseonline.co.nz/funrun
HELP REQUIRED
Call for Research Participants for project on computer assisted learning with children with autism
Penny Tok (PhD student) together with her supervisor Dr Jason Low at Victoria University of Wellington will be conducting an innovative research that looks at the use of computers and how it can aid children’s learning and enhance their performance.Â
Participants with autism aged between 6-15 years in the
A summary of report findings and child performance together with a small token of appreciation will be provided to all participants.
Please help enhance
Contact Penny at 021-2592073, (04) 472 1000 ext 8741 or penny.tok@vuw.ac.nz
And finally thanks to Alison Bradley for this link to research on stress and Aspergers Â
If haven’t read latest research article below well worth reading
 New Theories of Autism, Asperger Syndrome
http://psychcentral.com/news/2009/04/02/new-theories-of-autism-asperger-syndrome/5122.html
“Cortisol, the body’s stress hormone, might be a key component to understanding Asperger Syndrome, according to researchers.” The researchers hope that by understanding the symptoms of AS as a stress response rather than a behavioral problem it could help carers and teachers develop strategies for avoiding situations that might cause distress in children with the condition…..
Alyson Bradley http://www.asplanet.info/
Asperger Parallel Planet – web site/forum]

Hilary wrote on April 6th, 2009 at 6:02 pm:
Sorry, some of this material from the Ministry has lost formatting, vital information and therefore sense. Follow the internet link and go to the Ministry of Health website and see the proper version.
Anonymous wrote on April 6th, 2009 at 10:29 pm:
Mom Blogs – Blogs for Moms…
…
Senator Barack Obama on Autism and Disability wrote on May 13th, 2009 at 9:32 pm:
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