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The development of the Evidence-Based Guideline for Autism Spectrum Disorder is a significant cross-government project. The Guideline will be for anyone supporting or working with a people with autism, such as professionals or family members, who will be guided by what is known as ‘best practice’ according to internationally peer reviewed research. For those with autism it will be the benchmark for what they can expect from New Zealand support agencies. This Guideline has had a long gestation in the Ministries of Health and Education since the initial planning group was set up in 2002. For the last few years three workstreams of professionals, clinicians, educationalists, NGOs, parents and even the occasional person with ASD have been researching and developing this Guideline.

The draft version of over 250 pages appeared late last year for a public consultation which closed in March 2007. As well as consideration of public submissions, an impact assessment (a way of trying to assess potential effects on the population) and a gap analysis (what has been left out) of the Draft is currently taking place. It then has to be signed off by several cabinet ministers with portfolio interests covering autism (such as health, education, social development, disability issues, justice, labour, employment and finance). Hopefully the final improved version will emerge by the end of the year. Work on the implementation can then begin.

In accordance with such international Guideline protocol and the New Zealand Guidelines Group (www.nzgg.org.nz) the guidelines have been graded A,B,C and I according to the level and quality of research evidence. An additional ‘Good Practice Point’ was deemed necessary based on the experience or feedback to the guideline teams but for which the research base did not exist. These are more likely to be local NZ appropriate approaches which work but have not been through the international evaluation process. But as someone once said – the plural of anecdote is data.

Sections include diagnosis and assessment, supporting families, educational and other interventions, transitions, and Maori and Pacific perspectives. Potentially controversial parts include early intervention as this is an area with a variety of approaches with various amounts of sometimes contested research, to support or dispute them. Here is an example of an ‘A’ rated recommendation that could lead to a bit of discussion.

‘Services should be available to ensure a young child is appropriately engaged across a variety of home, educational and community settings in goal-directed activities for a minimum of 15 hours per week.’

At the other end the Draft is light on support for adults with autism.

My own brief submission mainly concentrated on the language of the Guideline which had been heavily influenced by clinicians. As such it is largely out of tune with the New Zealand Disability Strategy (www.odi.govt.nz/nzds/) which emphasises that people have impairments but society’s structures and attitudes are the cause of disability, and that people with impairments should be highly valued for who they are. As it was written by various committees, most of which contained clinicians, the language of the Guideline is generally very medical, emphasising difference or abnormality – what disability activists call the deficit model or tragedy narrative. For example the definition says:

‘Those disagnosed with ASD all display

• Abnormalities in reciprocal social interactions
• Abnormalities in patterns of communication
• A restricted, stereotyped and repetitive repertoire of interests and activities.’

This emphasis on special interest being an abnormality, a deficit rather than a strength, is unfortunate and shows the perspective and lived experience of people with autism had limited input into the Guideline. (And personally I prefer the description Autism Spectrum without the word Disorder.)

But overall I think the Guideline will be great step forward – either as a bottom line or an achievable aspiration. The Government through the 2007 Budget has already given $10.5 million for implementation over the next 4 years, and it will be reviewed within 5 years.

Why is a Guideline necessary? As understanding and diagnoses of autism increases, parents and families, schools and health professionals, needs assessment agencies, legal people, and advocacy groups have all been asking for more resources and knowledge to meet the challenges.

But these things do not happen in isolation and the historical process leading up to the Guideline development is worth noting.

In 1997 a desperate mother unable to find respite care or support, killed her 18 year old autistic daughter. This brought the issue of autism into the public spotlight. As a result an enquiry (known as the Curry Report) confirmed that supports for autism were scarce. This led to a series of committees involving government officials, parents, clinicians, school principals and members of NGOs such as Autism NZ, and the School Trustees Association and in 2002 the ASD Guidelines Steering group was convened.

Several other events provide additional context. For example, the 1989 Education Act legislated for the right for every child to attend their local school from 5-19 years. From a peak in the 1970s of numbers of people institutionalised, a process of deinstitutionalisation was happening and many of the people involved had autism (Kimberley Hospital was the last to close in 2006). In 1994 Aspergers Syndrome appeared for the first time in the diagnostic bible, the DSM IV. Soon Tony Attwood’s popular book on Aspergers appeared (Tony had once worked in Kimberley and travelled to NZ regularly to diagnose people). ‘Special Education 2000’ was a 1996 Government policy to encourage mainstreaming but unfortunately was poorly resourced and implemented. A group of parents took the Government to court over it and eventually won. And government policy of the 1990s to largely rely on market forces to meet needs in health, education and social services, led to increasing gaps in services.

The new Government of 1999 established a Minister and Office for Disability Issues. The New Zealand Disability Strategy was published in 2001 after a consultation process and the social model of disability which underpins it became official policy. This was followed by the To Have an Ordinary Life report which showed how applying supports in the spirit of the social model could help those with intellectual impairment participate (and this applied to many people with autism).

There is also an increasing expectation that agencies will work collaboratively on supporting people with autism to achieve their potential, and it with this background that the Guideline has been prepared. Just as the Guideline has been a result of a inter-sectoral process between professionals, parents and NGOs so it is up to us all to be partners in its implementation.

The Draft Guideline is available on the Ministry of Health’s website www.moh.govt.nz. There may be people out there who may be able to provide more information about the Guideline,such as when it will appear, as my experience has largely been as an interested observer.

Hilary Stace