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[This is an abridged version of a paper I gave as part of a symposium on the NZ ASD Guideline at the Australasian ASSID conference in Melbourne on 26 November 2008. I would be interested in any feedback.] 

Introduction

The New Zealand Autism Spectrum Disorder Guideline is a whole of spectrum, whole of life, whole of government approach to autism spectrum conditions  (www.moh.govt.nz/autismspectrumdisorder). This world first was published earlier this year after almost a decade of work. The process of implementation has now begun and, notably, the chair of the Implementation Advisory Group, is a young man who himself has Aspergers Syndrome, a type of autism.

I will start by setting the scene – how New Zealand came to the point of having this guideline, the input of lived experience into the process, and how we can harness the various expertises around autism. In New Zealand disability supports are mainly funded through the Ministries of Health and Education (although about 11 government agencies actually have some responsibility). This talk will look at how New Zealand came to have a Guideline, challenges involved in bringing the lived experience of autism into the Guideline process, and valuing the expertises many people can bring to the work.

My personal experience of autism is as a parent of a 23 year old son. What I’ve learnt is thanks to him, and I am grateful that he lets me talk about it. Just as everyone with autism is different so every experience of autism is different. I’m a board member of Autism NZ, and part of the collaboration working to implement the Guideline. I am currently doing academic research on autism and the policy process at Victoria University in Wellington. I’m also a consumer advocate on various government groups.

Historical strands

The ASD Guideline didn’t just happen. We are at a point of time in history when several strands have come together. Understanding of autism is rapidly developing and more and more people are being diagnosed. I believe there have always been people with autism but we haven’t had the language or diagnostic tools to describe it until quite recently.

Autism described In 1943 in the United States, Leo Kanner published a paper about the children he had observed children who had an ‘aloneness’ for which he used the word ‘autism’. Meanwhile in Vienna, Hans Asperger was working with a group of similar children. He described a more strengths based condition than Kanner – possibly because disabled children were being sent to concentration camps at the time. It took decades for his work to be translated into English and then till 1994 for Asperger’s syndrome to become an official diagnosis.

I have a friend whose son was one of the first Wellingtonians diagnosed with Aspergers less than 20 years ago, and I remember her excitement about it after the puzzling first years of his childhood. In those days autism itself was a rare condition thought to affect only about 3 in 10,000, and this new condition of Aspergers even rarer. Now some think prevalence of autism spectrum conditions (ASC) is as high as one in one hundred. So our understanding of autism is constantly evolving and who knows where we will be in 20 years time?

But this is only one strand.

Parent activism

Many people with autism like Temple Grandin pay tribute to their mothers for resisting attempts to put them in institutions. In spite of a tendency by Kanner and others to blame maternal ‘coldness’ for their children’s condition, all the parents I know are red hot advocates for their autistic children, and New Zealand has a tradition of parent activism.

By the late 1960s some New Zealand parents were getting a rare diagnosis of autism for their children. They brought an international expert, Dr Mildred

Creek to

New Zealand, ran workshops and holiday programmes and formed their own parents’ group, which eventually became Autism NZ.

 Disability rights

The growth of the disability rights movement since the 1960s has brought huge changes. This current generation is the first with expectations of rights to education, employment and independence. Disabled lobbyists have been busy in New Zealand too. Achievements included the right of every child to attend their local school in the 1989 Education Act, and the inclusion of disability in the 1993 Human Rights Act, the first Minister for Disability Issues in 2000 and the 2001 New Zealand Disability Strategy. And now of course we have the UN Convention on the Rights of Persons with Disabilities. New Zealanders had a significant input into the drafting and passage of this convention. 

Autism rights

There is now also an international autism rights movement, which has coincided with the rise of global internet use. One very active US web based group – the autistic self advocacy network – is run by a 20 year old, Ari Nee’man (AutisticSelfAdvocacyNetwork@yahoogroups.com). It circulates political news, advocates for recognition of autism as its own minority culture, and challenges the parental and medical desire to ‘cure’ autism.

Deinstitutionalisation

Largely because of disability activism, this is the first generation of autistic people which has not been institutionalised, in New Zealand and I imagine here in Australia too. As recently as the 1970s parents were urged to put their autistic children into institutions and forget about them. Historically, disabled people have been seen as deficient, scary, degenerate and not inherently equal to so-called normal people. For decades they were locked up and drugged. So the closure of our last institution in 2006 was a great landmark (which is not to say there aren’t new challenges).

1997 killing of autistic girl

Another strand started in 1997 in NZ when a mother killed her autistic teenage daughter. This led to media and policy interest, two major reports, the first consultation with parents and a decade of work leading to the NZ ASD Guideline. NZ is not alone in having parents kill their autistic children as there have been similar tragic events in many other countries. But New Zealand’s small size and connectedness meant that a collaborative response was possible. And it was championed by some dedicated public servants who realised that innovative approaches were required.

Lived experience

The ASD guideline has tried to incorporate expertise of those with lived experience. Lived experience is a term I use to describe that understanding that is gained from having a particular life experience and knowing what it is like 24 hours a day, 7 days a week. My impression from discussions with many people who have autism and accounts in blogs and autobiographies, is that there are shared lived experiences, but within that is a diversity of lived experience. For example, they may share sensory sensitivity, and difficulties in understanding neurotypical people – us – but there will also be great variations.  

Similarly, there are shared lived experiences that parents of autistic children have. But there is diversity – even contradiction – within our lived experience.

But in the past these lived experiences – of people on the spectrum and parents – haven’t been valued in the policy process.

Who are the Experts?

So the key question here is: who are the experts when you look at an issue like autism?

People with autism

My view is those who live with it every day – people with autism – are the obvious experts. They are also the experts of the diversity of their lived experience of autism. People like Temple Grandin, Wendy Lawson and New Zealand’s own Jen Birch have written about their lives as autistic people, which are fascinating for their common themes as much as their diversity. Jen Birch has played a major role in our guideline development.

You might say – but these are the articulate ones. Unfortunately, the predominant view of autism is of something deficient, or broken or not fitting – something wrong. This is increasingly challenged by members of the autism community such as non-verbal autistic woman Amanda Baggs on her Ballastexistenz website (http://ballastexistenz.autistic.org). She challenges our assumptions of what is normal. And a recent article by another autistic woman posted on the autistic self-advocacy site, looks forward to a time when there is no treatment for autism as it will be seen as a minority culture in its own right and not something abnormal or deficient. While some understanding and support would be nice, they don’t want interventions. These views also challenge us from the dominant culture.

Parents/carers

Then there are those who care for people with autism, such as parents and other family members. They are also experts, because they have problem solved a lot of the caring and advocacy issues. But their expertise is of a different kind from those with autism. It is a caring and problem solving expertise. Like me they become experts thanks to their autistic family member and because of their family member’s particular needs. Parents are experts on their children. But we can’t assume that parents are always the best advocates for their autistic children. I know that there are times when my expectations for my son are much lower than he deserves and I have had to be pushed by others to give him more independence – to allow him the dignity of risk.

Professionals

Then there is the expertise of those who work with autistic people using their professional knowledge as teachers, psychologists, speech therapists and paid carers. They are the ones who can go home and leave the autism behind. The pay packet is not necessarily a measure of expertise – there are those who are champions for the person with autism and go beyond the basics of their job description. I have found my best support in some exceptional teacher aides, carers and volunteers – the lowest paid in the hierarchy.

NGOS and community organisations

Then there is the expertise of the non governmental agencies such as Autism NZ and Altogether Autism, who get government money through contracts, and raise money from the community. They are often parents themselves. Their challenge is to increase the representation of people with autism in their organisations.

Public servants

Then there are the public servants – policy makers, advisors, educators and researchers and managers (and their subcontractors), whose job it is to get public money from politicians, and to use it wisely to improve the lives of people with autism and their families.

Politicians

And then there are the controllers of the purse – the politicians.

People can belong to more than one of these groups. For example, some who work in government agencies also have family members with autism.We need all these people to work together to get some good outcomes for people with autism and their families. Our ASD Guideline has been world leading in attempting to bring these expertises together to create this whole of spectrum, whole of life, whole of government guideline.

But how do you turn the traditional power hierarchy around to get the input of those traditionally overlooked – people with autism and parents? One significant step was ensuring that the group advising on the implementation of the Guideline was chaired by a person with autism – Matt Frost, a young man from the sector. There has also been participation from parents and others on the spectrum throughout the process. However, how to get representation from those who are non-verbal or require extra support to participate in meetings – has been discussed but not yet addressed.

New Zealand Policy context

As well as needing all these expertises, government work takes place under a framework of principles and strategies.

As you might know New Zealand has just had an election and has had a lurch to the right. Voters apparently thought that in these financially worrying times we needed as Prime Minister a man with the lived experience of international money trading.

So this policy overview is mainly of the last 9 years and there is no guarantee that any of this, including the work on autism, will continue. But we are ever hopeful.

For the Guideline the most significant current policies are these

Social model of disability

Health and disability policy is based on the social model of disability, whereby people have impairments but it is society which disables. It is up to all of us to remove barriers and ensure the citizenship rights and participation of everybody.  Everyone is inherently equal, but some people have extra support needs.

UN Convention

Hugely significant is the recent United National Convention on the Right of Persons with Disabilities.

New Zealand, including many disabled NZers, had major input into this Convention. We ratified it in September and all our laws are now compliant.  

NZ Disability Strategy, Ordinary Life Report

Also of great significance are the 2001 NZ Disability Strategy and our 2003 report To Have an ‘Ordinary’ Life. The Ordinary Life report is relevant to people with autism, as it explains how we all can assist the participation of people who need extra support as indicated by the social model of disability.

Legal framework, ODI

The 2000 NZ Health and Disability Act has legal requirements for collaboration and consumer input. Also in 2000 the first ever Minister for Disability Issues was appointed and in 2002 the Office for Disability Issues was started, which now has a monitoring role for the NZDS.

Treaty of Waitangi

But what makes NZ unique is the Treaty of Waitangi and its expectations of partnership, participation and protection which are very relevant to the Guideline work. If we can get the Treaty stuff right I think we would go a long way to an inclusive and respectful society for all citizens. The Treaty and the public policy principles behind it is one reason why NZ has been able to get this far on collaborative autism work.

Right relationships

And there is also something more subtle – the need for ‘right relationships’ – it is attitudinal, involving respect, power sharing and good faith. This is hard, as it requires people to be continually self-reflective in their own behaviours and actions. At the beginning of her term as Prime Minister Helen Clark and her ministers wanted to set out new benchmark for behaviour between government and the community and spelled it out in a ‘Statement of Government Intentions for an Improved Community-Government Relationship’. Here is a quote from it    

‘Government is committed to creating a genuine partnership with the community, voluntary and Iwi/Maori organisations. Building strong and respectful relationships with the community sector will take time and will require hard work, reflection and active engagement’. 

Right relationships are particularly important in disability issues, considering the history.

What now?

The input of lived experience must be increased in all areas of policy development and implementation. 

Research must be framed and mentored by those on the spectrum. We require transformative research whereby the intention is to improve lives. We have an ethical responsibility to use the scare resources for the greatest good.

We must avoid the idea of autism as deficit or something broken and one way is by avoiding negative words and concepts like ‘suffer’ or ‘afflicted with’.

We also have to think of new ways of working, and supporting the young emerging autistic leaders.  

We need to continually reflect where expertise lies, how best to address power imbalances and work collaboratively. We must give more voice, support and participation opportunities to people with autism, including those who are non-verbal or less high functioning. Just because it’s hard is no excuse.

And continue efforts to increase advocacy and funding.

The ASD Guideline is a great chance to practice getting relationships right.