In researching this thesis I found that as diagnoses increase, more and more people are becoming familiar with the condition of autism. At a conservative estimate about 40,000 New Zealanders are on the autistic spectrum, which means that many families and communities have or know someone with autism, and may have experience of the difficulties in getting good support or services. However, most academic research relates to clinical aspects of autism, causes or interventions. This makes my PhD on autism policy unusual in that I looked at how to improve services and support for people with autism, and their families, using the premise that this is a problem for society, not just individuals.

 My research showed how fragmented and unsatisfactory New Zealand public policy is towards autism, even within the wider context of disability policy generally. Getting people with autism and their families involved in issues around policy and implementation is one possible solution. Examining autism as a ‘wicked’ policy was innovative as this concept of intractable policy problems has not been applied to the disability sector before. I examined the history of disability in New Zealand and overseas and the international development of the condition of autism as definitions and diagnostic criteria continue to evolve. For the chapteron education  I looked for voices from autistic students themselves. I also studied the 2008 New Zealand Autism Spectrum Disorder Guideline as a case study, and finished by providing visions for how things could be in the future.

There are still several gaps to fill in our knowledge about autism in New Zealand and many things we could do to start filling them. One simple  issue to tackle is statistical information. For a start we have very little hard data about incidence of autism in New Zealand , and the various agencies who work with autistic people and their families either do not record details of a diagnosis, or have differing criteria and definitions. They even have different ideas about when a child becomes an adult. Unfortunately for adults there are few public pathways to any services or support. There is much potential for more research on autism and the experience of being autistic in New Zealand,  including participatory action projects.

My interest in this topic arose from having an autistic son who is now an adult. Below is the abstract as published in the thesis.

Abstract

Autism Spectrum Disorder (ASD) diagnoses have been rising rapidly in recent years and New Zealand is just one country grappling with the policy challenges this presents. Currently, love, such as a supportive family, and luck, that appropriate services are available, are required by people with autism and their families for good outcomes, a situation that is neither equitable nor sustainable. Autism was first named as a separate condition in 1943. The concept of autism has developed significantly since then in many ways, including as the cultural identity that many autistic adults now claim. Influenced by the international disability rights movement and local activism, New Zealand policy is now based on the social model of disability, whereby society as a whole has responsibility for removing disabling barriers.

In 1997, a New Zealand mother, unable to find appropriate support at a time of crisis, killed her autistic daughter. A decade of policy work followed, leading to the 2008 publication of the New Zealand Autism Spectrum Disorder Guideline (Ministries of Health and Education, 2008) which is the first whole-of-spectrum, whole-of-life, whole-of-government, best practice approach in the world to address the extensive issues surrounding ASD. Prioritisation and initial attempts at implementation revealed new problems. The complexity, lack of simple solutions and fragmentation of autism policy indicates that this is a ‘wicked’ policy problem. To move beyond this situation requires innovative and collaborative approaches. The ‘transformative paradigm’ is a research methodology which builds on recent developments in participatory and emancipatory research, and disciplines such as disability studies. It advocates approaches based on mixed methods, social justice, ethics and partnership, so is particularly suited to examining a problem such as autism, and indicating ways forward.

There is untapped expertise among those with lived experience of autism and their families to tackle the ‘wicked’ aspects of autism, but to harness this expertise requires relationship building which addresses power imbalances and past injustices. This thesis analyses New Zealand autism policy and suggests ways this lived experience could be better respected and incorporated into policy processes, in an attempt to move past the currently required variables of love and luck.

Here is the link to the full thesis from the Victoria University Library. It is a big pdf file. Just please acknowledge if you quote from it.

http://researcharchive.vuw.ac.nz/bitstream/handle/10063/1920/thesis.pdf?sequence=2

http://bat-bean-beam.blogspot.com/2010/09/questions-asked.html

This is not our daughter’s story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it’s not an untypical story. We’re likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.

The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We had deferred to their expertise and initiative for too long, waiting to be told. We didn’t know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don’t wait. Don’t labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I’m prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don’t have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It’s only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You’re not going to run out of extra expenses any time soon.

That’s the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here’s where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it’s not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don’t get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister’s doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.

It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?

One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:

This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 

It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven’t changed a bit.

How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:

This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 

What’s ‘meaningful learning’, and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.

It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:

The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child’s needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.

All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.

 The act requiring the new educational standards regime was passed through all its stages in Parliament in 24 hours just before Christmas 2008. It did not go to a select committee where the public, autism advocates, and those with lived experience, could make submissions. This was unfortunate as some of us could have pointed out the negative implications for our autistic students, most of whom do not fit this ‘one size all’ approach.

 My concerns were, firstly, that our autistic students typically have strong strengths and weaknesses across curriculum areas, and limiting assessment to only two areas would give a negative and limited view of our children’s abilities. Secondly, we know that some schools only grudgingly accept our children, and they are quick to find an excuse to ask them to limit their attendance, or even leave. If these standards are to be translated into league tables, schools will not be keen on our ASD students who may not excel in the narrow curriculum areas to be reported on.

 Under the new system, children from early in primary school will be assessed against some very narrow requirements. Temple Grandin has already warned of the negative effects on autistic children of the ‘No Child Left Behind’ regime in the US, which our new regime  is based on. In her recent book As I see it (2008), she describes a parent’s frustration that in order to pass the standard, the child was denied playtimes or anything that interested her, as she did repetitive drills to learn the required material.

 English autistic savant, Daniel Tammet, has written about his own education and describes the autistic student’s typically uneven learning profile in his books Born on a Blue Day and Embracing the Wide Sky. He personally found the physical process of writing very difficult from a coordination point of view, progressing slowly and with frequent errors. Although brilliant with pure numbers, when letters or symbols were introduced into maths, as in algebra, he became confused. An additional requirement of our numeracy testing will be that students show their workings. In Embracing the Wide Sky which includes discussion on intelligence and how the mind works, Daniel describes the visual and aural patterns by which he does his mathematical and linguistic learning, and such pattern thinking is typical of autistic thinking. But it does not fit the standards-required-template. Daniel also shows that knowledge is culturally constructed and what has significance for one culture (such as the strawberries used for counting in our numerical standards requirements) may be incomprehensible to other cultures.

Reporting of these standards to parents will be on Plunket type graph, showing parents and students in a clear visual way that those below the line are already educational failures from 5 years old. How many will be on the autistic spectrum and already finding school a negative experience? That is not the way to increase engagement, participation or achievement.

Unfortunately, this focus on such a limited view of literacy and numeracy in our standards has also meant cuts in other school support. School advisors in areas such as science, art and music have been made redundant, as have many early childhood advisors. Yet these are the experts who teach the teachers about teaching and learning. We also know that libraries can be a safe place at school for our children – but now school library advisors in the National Library have been cut. And these come on top of cuts to educational lifelines for our autistic adults such as night school classes (and large areas of New Zealand will have no night classes at all from next year) and cuts to the Training Incentive Allowance whereby our autistic adults on benefits can improve their lives by access to tertiary study.

The autism sector is right to be alarmed at the cumulative effects of all these negative political changes on the ability of autistic students to achieve their acadenic potential.  The standards regime will be  implementated from the beginning of the 2010 school year. For the sake of our autistic students, we must pay attention and report what happens.

Together they have formed a research team to look at how young people with intellectual impairment like them can have more control over the transition process and resolve barriers many face in going on to work or independent living.  The statistics reveal that, compared to people without intellectual disability, people with an intellectual disability are more likely to be unemployed, have fewer qualifications, have fewer friends and live at home or with caregivers.  And there is a big gap between government policy and what actually happens.

So what can be done to address this? Their research questions include asking how young people can have more choice and control over their lives in this transition from school to post school lives.  Their focus groups include those with answers: young disabled people both at school and school leavers, famlies, educators and employers.

They have been jointly involved in research design. I asked what themes are emerging from their research as to what young disabled people want? After carefully explaining to me that there are ethical and confidential issues around their research which means they can not tell me what individual people might have said, they can reveal that some of the things the young people want are real jobs which pay proper wages, friends, to go flatting, to get married and have a family (ie the same things non-disabled young people want).  The researchers want to be valued for who they are and what they do and this, of course, includes wanting to have their research valued, to make a difference and to be paid, professional researchers. Colin is applying for funding so this can happen.

These two young people are impressive presenters on their topic and I’m sure are very skilled and polite facilitators of the focus groups.

When those with insider knowledge and lived experience conduct research it is very powerful.

Best wishes to them all.

(This was one of several papers presented at the New Zealand branch of ASID (the Association for the Study of Intellectual Disability) in Hamilton 26-27 August on how people with intellectual impairment can be central to the research process.)

Keynote address to the Disability Studies Conference, Disability Studies Research Centre, University of New South Wales,Sydney, June 2009

Dr Martin Sullivan, MasseyUniversity, Palmerston North  

Introduction

This week is a significant time in the disability communities of Aotearoa and Australia because it was about a year ago we lost two major disability activists, teachers and researchers.  I speak of Associate Professor Anne Bray and Associate Professor Christopher Newell and would like to take some time to remember and honour them.

I doubt many on this side of the Tasman would have heard of Anne Bray, let alone known her.  Anne’s younger brother had Down syndrome but he lived at home when children with Down syndrome were sent to institutions. Anne began her teaching career at Canterbury University in 1974 before being appointed to the position of lecturer in the Faculty of Education at the University of Otago. Disability issues always featured prominently in her teaching.  In 1984 Anne was appointed director of the Donald Beasley Institute (DBI) in Dunedin which had been established for research work in the area of intellectual disability.  The guiding principle of all Anne’s work was that of social justice and had the object of improving the lives of intellectually disabled people. Anne and the DBI were at the forefront of the movement to close the large psychopaedic hospitals: she and her team provided the empirical evidence for their closure, the how of the closure, and then the empirical evidence of the success or otherwise of those closures.  She built a strong team of researchers, supervising many through their PhD studies in conjunction with the University of Otago.  She edited the New Zealand Journal of Disability Studies (NZJDS) for many years before handing the editorship on to me when she contracted cancer.  Anne’s legacy is her fearless advocacy for disabled people, the DBI and its ongoing transformative – emancipatory research with intellectually disabled people in Aotearoa/New Zealand (ANZ).

Associate Professor Christopher Newell of the Tasmanian School of Medicine was a well known and much loved disability activist and intellectual in Aotearoa New Zealand.  So much so that he was accorded honorary Kiwi status whenever he visited.  He was in much demand as a keynote speaker and would do at least a conference a year in Aotearoa.  News of his death led to an outpouring of grief on our side of the Tasman. We held a special remembrance ceremony at which a number of us from the disability community spoke of his lasting impact and the lessons he had taught us in his gentle, persuasive way.

Christopher began his working life in a sheltered workshop and ended up as an Associate Professor lecturing medical students in ethics.  Often he would lecture his students from his hospital bed, which he would get wheeled into the lecture theatre in the Hobart Hospital.  Christopher was an academic activist to the core.  He was also an Anglican priest who chose not to take the high road but trod the backroads and byways where he befriended, counselled and supported the abandoned, destitute and lonely – many who were disabled people.

Christopher’s big thing was about “moving disability from other to us”.  He did this on a personal level among disabled people and struggled to inculcate it in the consciousness and public life of Australia.  He was instrumental in approaching me to extend the NZJDS to become an Australasian journal.  He will live on in journal we are planning: Disability Studies: Aotearoa and Australia.  He lives on in his work, and, more importantly, in the hearts of the many he touched and whose lives he transformed.   

Two mighty totara have fallen in the forest of Tane.  Haere ra Christopher.  Haere ra Anne.

In preparing for this key note, I had a look at the abstract I had written some months earlier to remind me of what I said I would say today. I thought it prudent to have a look at some of the work of my Australian colleagues so as to avoid carrying coals to Newcastle and looking rather stupid.  In one paper, Helen Meekosha, makes the point that the insights emerging from Australian disability studies seem to have little relevance to the makers and shakers in disability studies in the UK and USA who are immersed in their own projects (and, I might add, rivalry).  It then occurred to me that disability studies in Aotearoa New Zealand are probably just as irrelevant and unknown to Australian disability studies and scholars as their’s are to the North. Hence, rather than sticking religiously to my abstract, I though this might be a good time to tell you what has been going on across the ditch in disability studies, disability policy and disability generally.

Disability Studies 

The only programme in ANZ dedicated to disability studies is the one I teach.  It is a Post Graduate Diploma in Arts with an endorsement in Disability Studies.  A number of students go on to take an MPhil which gives them a masters degree by completing a disability related thesis. 

The programme began in 1993 with a paper called Disability Studies which concentrated on theory, policy and methodology.  It could be taken as an elective in either the Masters of Social Work or MSP programmes.  In 2003 we got permission to offer a PGDipArts with an endorsement in Disability Studies, so a paper concentrating on the Disability Rights Movement, rights, advocacy, ethics and contemporary issues was added.  I would like to add another paper so I could have a named Masters degree but since funding is tight in the tertiary sector the orders from on high have been to cut rather than add papers. People who take the PGDipArtsDS include disabled people, parents and, mostly, people working in the sector.  Next year I begin teaching a 3^rd year paper, Disability in Society, at undergraduate level which I hope will serve as a feeder into the diploma course.

When asked what disability studies are about I tend to say “The social & political aspects of disability”. I’ve modelled the programme more down the British line than the American, so it’s rather paradoxical that an American theorist, Tobin Siebers, more accurately captures what I try to do in the Diploma when he says:

The number one objective for disability studies … is to make disability an object of general knowledge and thereby to awaken political consciousness to the distasteful prejudice called “ableism”. (2008, 81)

I do this by exposing my students to what disabled writers and their allies have to say about disability in contemporary society.  Many find the whole ‘social oppression’ thesis quite shocking; and, indeed, it is shocking: what happens to most of us with impairments in today’s society is shocking. 

I must admit I sometimes feel a bit of a fake teaching the social oppression thesis because here I am sitting in front of class, highly educated and earning a good salary.  My position and income gives me certain freedoms and choices my students don’t have or are ever likely to have.  And I think this is why I like Siebers’ definition so much; it reminds me that no matter how privileged a position I occupy within academia, I am still subject to ableism both within and without academia.

But I digress.

Other programmes featuring disability in ANZ are mostly taught in the Colleges of Education which are involved in teacher training, specifically special needs education.  At the Massey University College of Education, a Centre for Research into Inclusive Education teaches papers firmly based on the social model as do the programmes at Auckland and Canterbury Universities.  

There are of course students dotted around the various campuses completing theses on disability related matters in disciplines such as anthropology, sociology, education, psychology and public policy.  These usually only really come to my attention when they are finished and if I get to examine them.

Numbers at Masters and PhD thesis level have increased in recent years thanks to scholarships established by the Health Research Council.  These scholarships are aimed at increasing the research capacity in the disability area – especially among post grads with disability.  A few years back the HRC asked Anne Bray, Alan Clarke and me to review their disability funding portfolio.  We found that practically all funding had been knobbled by clinicians doing ‘cause’ and ‘cure’ type research.  We introduced HRC to the social model and argued they should direct funds to researching the well-being of impaired people living in a disabling society. They agreed (and have since been true to their word) and we then said “well to do this research we need to increase capacity amongst disabled people by funding them through advanced study.”  Hence the scholarships.

What made this all possible was the policy climate of the day.  As you shall see, we had a NZ Disability Strategy in place and a government with a well developed disability consciousness.  I think it important to spend a bit of time on policy and disability policy at this point, because much of what happens within Disability Studies in Aotearoa is very much determined by what is happening in policy.  By this I mean that when teaching a research based degree, I find that students mostly look to apply disability theory in a critical analyses of contemporary disability policy.

Disability Policy Aotearoa 

To understand social policy in NZ one has to understand the founding document of ANZ, the Treaty of Waitangi.  Te Tiriti o Waitangi was signed on 6 Feb 1840 between Maori and representatives of the British Crown.  It is a short document consisting of three articles.

Article the first [Article 1]

The Chiefs … of New Zealand … cede to Her Majesty the Queen of England absolutely and without reservation all the rights and powers of Sovereignty which [they] exercise or possess…

Article the second [Article 2]

Her Majesty … guarantees to the Chiefs and Tribes … the full exclusive and undisturbed possession of their Lands and Estates Forests Fisheries and other properties which they may collectively or individually possess … but the[y] … yield to Her Majesty the exclusive right of Preemption over such lands

Article the third [Article 3]

… the Queen of England extends to the Natives of New Zealand Her royal protection and imparts to them all the Rights and Privileges of British Subjects. 

But to confuse matters, two texts were signed: one in English and one in Maori.  About 40 Chiefs signed the English version, 500 the Maori version.  I’ll return to these in a moment.

The treaty was by and large ignored by settler governments and following the land wars of the 1860s, much of Maori land was alienated via confiscation, legal and illegal land deals, swindles etc and with the loss of land the loss of language, culture and traditional kin based society followed as Maori drifted to urban centres. Here the ravages of alcohol and disease took further toll. 

By the 1960s, Maori were largely an urban, dispossessed people at the bottom of all social indicators.  Clearly the policy of assimilation was not working and one of biculturalism was suggested as the way forward for Maori.  Biculturalism is a type of cultural pluralism characterised by two partners rather than several.  This was more in keeping with the spirit of the Treaty of Waitangi which implied a partnership between Maori and the Crown. By the 1970s biculturalism had become the basis for Maori policy and through the next decade it quickly became the goal for all government departments.  By the 1990s, substantial progress had been made to at least introducing a cultural dimension and increasing the Maori workforce in the public sector (Durie, 1994). 

Parallel to, and giving impetus to movement within the state, was a renaissance in things Maori within urban settings. In the early 70s a number of young urban radicals formed Nga Tamatoa and began discussing their alienation from their Maoritanga; ie their loss of language and connection to their ancestral land, marae and their culture.  One faction within Nga Tamatoa modelled themselves on Black Power leaders in the US while a more conservative, university educated group set about supporting Maori migrants to the cities to find jobs, representing Maori before the courts, they set up kohanga reo or language nests to teach their children the language, established year long courses for training teachers in the reo and so on. So from the 70s what became known as the Maori renaissance in things Maori dominated the political & cultural consciousness of Aotearoa.  The Treaty of Waitangi, breaches by the Crown and calls to honour it were central to this renaissance (Walker, 1990; Durie, 1994).  

As I have mentioned there were English and Maori versions of the Treaty and this resulted in much debate around interpretation.  [See Durie 1994 p.85 for diagram] Maori argued that a greater degree of Maori authority was promised in the Treaty, while the Government argued that a full transfer of sovereignty had occurred.  In an attempt to reach some sort of compromise it was decided that it would be easier to follow the principles underpinning the Treaty, rather than the actual text itself.  A series of Treaty Principles subsequently emerged in a number of forums including the 1988 Royal Commission on Social Policy (RCSP), the courts and the Crown/government.  These principles were used to guide the implementation of the Treaty in various settings. The ones which concern us in Disability Studies are those which the RCSP formulated to guide the development and implementation of social policy generally.  These are the principles of partnership, participation and protection.  

Partnership

·        sometimes used to describe a working relationship between Maori Iwi (tribes) or hapu (sub-tribe) and government agencies

·        implies an association of equals but it more often refers to a reassignment of government authority to a tribal group within constrained guidelines – I fear that this is about as good as it gets in some of those partnerships between disabled people and the state or professional bodies 

·        symbolism – Treaty partners working together to achieve mutually acceptable goals

Participation

·        refers to Maori involvement in a particular activity or sector eg District health boards (hospitals and their regions)

Protection

·        this relates to Article three in the Treaty which guarantees Maori the same rights and privileges as other New Zealanders

·        implies “active protection” which requires Government to intervene positively rather than just let Maori take their chances alongside other groups ie provide culturally appropriate services

Many within the disability rights movement in NZ see themselves as occupying a similar position to Maori in mainstream society.

·        Maori were colonised by the British crown; disabled people have been colonised by medical and associated professionals;

·        Maori were made strangers in their own land; many people with disability were locked up in institutions and made strangers to their communities;

·        Maori were forced to participate in a biased, mono-cultural system; disabled people were excluded from participating in their communities on their own terms;

·        Maori are discriminated against by racism; disabled people by disableism/ableism;

·        Maori have high rates of failure in an institutionally racist education system; people with disability are routinely excluded from an ableist, mainstream education system;

·        Maori are subject to higher rates of unemployment and lower rates of income than non Maori; disabled people have high rates of unemployment and many are condemned to survive on subsistence level benefits;

·        Just as Maori have had tino rangatiratanga denied and made subject to British law, people with disability have had their humanity denied and made subject to pity, medicalisation and welfarism;

·        Just as Maori have been granted a limited form of tino rangatiratanga over tribal resources, many disabled people have been granted limited control over their lives within the confines of services, individual life plans, group homes and so on.

Given these parallels, it is not surprising that many disabled people in Aotearoa came to the conclusion that they needed their own treaty; a treaty to establish a genuine partnership with government; a treaty to guarantee our equal participation in society; a treaty which affirmed the active protection of our citizenship rights by the state.  With the election of a Labour led coalition government in 1999, this seemed a distinct possibility because in opposition they had promised us a Minister and Office for Disability Issues and the development of a NZ Disability Strategy. 

After extensive consultation with disabled people, the NZDS was adopted in 2001.  It is underpinned by the social model and aims to create a non-disabling society (P.5) by progressively removing the barriers to participation which confront impaired people.  This is captured nicely in the following:  

Underpinning the New Zealand Disability Strategy is a vision of a fully inclusive society.

‘A society that highly values our lives and continually enhances our full participation.’ (NZDS 2001, p.1)

Fifteen objectives are set out for the Government to achieve on its way towards a non-disabling society.  Ministries, departments and state agencies are required to report on the progress they have made in implementing the NZDS in their annual reports to parliament.  In the 2004/05 Progress Report, it was noted that a growing number of crown entities and territorial authorities were willingly taking part in Strategy implementation even though they were not required to. This is encouraging.  As is the broad, cross party support for the Strategy.  

Given this, many disabled people in Aotearoa New Zealand now see the NZDS as their treaty with the Government to build towards a society in which they can participate on their own terms and as much as they want. It also implies a partnership between disabled people and the government as well as the active protection of disabled people by the government.  Such partnership was highly visible during negotiations around the UN Convention on the Rights of Persons with Disabilities; from the beginning the NZ delegation was the only one to consist of State officials and disabled people including one with intellectual disability.

The NZDS has its limitations.  For example, it only applies to the state and those contracted by the state to provide services. And while its philosophy is right, the objectives could do with refinement, and implementation is quite lumpy.  But what it does provide is a multitude of entries for analysis and critique within disability studies.   And then, two questions are critical: is it working for Maori? Is it working for non Maori?

And therein lies the rub.  When I, a pakeha, am talking about disability, am I talking about the same thing as when Maori are talking about disability?  Up to twenty-five years ago it would have been acceptable for me to go out, do the research and become the ‘expert’ on Maori and disability.  This is unacceptable today because of Treaty consciousness, tino rangatiratanga and the reality that only Maori can speak for Maori with any authenticity.  And this presents a problem insofar as there are very few Maori disability researchers in the field.  

Maori and disability

One source, Maori Concepts of Disability, by Jo Kingi and Anne Bray reveals the potential for our talking past each other.  When Kingi asked Maori what the word disability or the concept disability meant to them, they generally saw it in terms of the effects of colonisation: 

It’s disability to have your land taken off you, it’s a disability to have your family dissolved and shifted to an urban environment where you’ve never been before.  It’s a disability to be told that you can no longer grow your own food so you have to get a job in a system that has been set up by white people for white people….  (Kingi and Bray 2000, p.8) Maoris are being brainwashed into doing things the pakeha way – that’s disability – it’s got to be done the Pakeha way – brainwashed. (ibid. p.8) We are disabled in the Pakeha world – in our world we’re not. (ibid., p.21) Poverty was seen as more disabling than any physical, psychiatric or sensory impairment. Drugs, alcohol and tobacco use by Maori were issues that were also perceived as disabilities by Maori (ibid., p. 12).   Policies of assimilation, especially the legislation which made the teaching of te reo Maori (language) in primary schools illegal and which remained in force until 1967, were seen as especially disabling.  One person spoke of his loss of language as his disability. Most spoke of the process of colonisation and its particular effects on identity and self worth as a disability:  We have a tendency to think of people in wheelchairs but I think from my understanding, and no doubt others, that disabilities is that people have lost their knowledge of whakapapa [genealogy] and how they are related to whanau, hapu and iwi [family, sub-tribe and tribe].  (Kingi and Bray 2000, p. 18) When asked if they thought there was a difference between Maori and pakeha concepts of disability, many commented on just how different the worldviews actually are:  Well I think the Maori health view is far more holistic than the pakeha health view – it takes into account the whole being and I believe the pakeha health view separates it – fixes one thing (ibid., p. 22)  Well I know we are different because we accept people as they are. (ibid.) There was no such things as manic-depressives or schizophrenic in Maoridom… . (ibid.)  It is important to note that Kingi stresses there is no such thing as ‘the’ Maori view on disability and what she presents is ‘a’ Maori view of disability.

This tends to be born out by an earlier report He Anga Whakamana. A Framework for the Delivery of Disability Support Services to Maori, (1995) which takes account of the effects of impairment as well as those of colonisation and assimilation.   In one of the earlier quotes, a participant mentions the loss of whakapapa and the knowledge of relationships between whanau, hapu and iwi as a disability.  This person is talking about whanaungatanga or relationships; the sense of family connection built through shared experience and working together which gives people a sense of belonging.  Whanau translates into extended family or family group.  So Maori do not see themselves as individuals so much as part of an extended group, be it whanu, hapu or iwi.  Identity and place in the world is closely tied to these groups.

This has implications for disability studies and disability support services, because while it may be appropriate to treat disabled pakeha as individuals, disabled Maori must always be seen as part of a whanau.  This already happens to a certain extent when Maori are negotiating over services etc. They are encouraged to bring members of their wider whanau to support.   When my pakeha friend is having another confrontation over DSS for her autistic daughter, I usually attend these meetings as whanau support even though there is no blood relationship between us.  This is entirely consistent with contemporary meaning of Whanau.  I guess you could call this biculturalism in action.  In summary, it is evident that disabled Maori see themselves as Maori first and as disabled people second.  This has huge implications for disability studies and the disability movement in Aotearoa in terms of developing a true partnership with Maori if disability studies and the movement are to have any relevance.   

It also means that disability studies in Aotearoa has to become bicultural and within that bicultural framework provide active protection for Maori academics and Maori students.  Active protection suggests to me a parallel development in which Maori have rangatiratanga and are resourced to do disability studies according to tikanga and in a culturally appropriate way.    Just as the Treaty of Waitangi implies one nation, two peoples, a Treaty centred disability studies programme will be bicultural and involve exchanges and opportunities for learning between te Ao Maori and Pakeha worldviews on disability I think it would be very useful for disability studies in both Aotearoa and Australia to do some research into whether any indigenous disability movements have developed, and if so, what forms do they take, their culture, objectives and so forth. I think we have a lot to learn from indigenous people when it comes to disability. 

On that note I would like to finish.  I have attempted to provide some insight into disability studies in Aotearoa NZ by unpacking the cultural context which influences both disability policy and disability studies.  I have done this at the risk of conveying a view of disability studies as been narrowly policy focused and obsessed.  Nothing is further from the truth as all the debates about the utility of the social model, of structural as opposed to poststructual approaches, the problem of impairment and how to bring the body back in without slipping into medicalisation etc, etc are alive and well on our side of the ditch.  These are worthy debates but, perhaps it is time for us in the global south to be shifting our attention to what is distinctive about disability in our part of the world, what we can learn from it and how to ameliorate it.  

Durie, M.  (1994) Whaiora. Maori Health Development. Auckland: OxfordUniversity Press.

Kingi, J. and Bray, A. (2000) Maori Concepts of Disability. Dunedin, N.Z.: Donald Beasley Institute Inc.

Ratima, M., Durie, M., Allan, G., Morrison, P., Gillies, A. and Waldon, J. (1995)  He Anga Whakamana. A framework for the delivery of disability support services for Maori. Wellington, N.Z.: Core Services Committee, Ministry of Health.  

Siebers, T (2008) Disability Theory. Ann Arbor: The University of Michigan  Press.

Walker, R. (1990) Ka Whawhai Tonu Matou. Struggle Without End. Auckland: Penguin Books.

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. 

Barack Obama
 

In New Zealand an update to the ASD Guideline was sent out

Information backgrounder for
Altogether Autism

New Zealand Autism Spectrum Disorder Guideline and World Autism Awareness Day (2 April)

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/whānau. 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/whānau 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/whānau, 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.

Elliot’s 14. He’s pretty much non-verbal. He would be classed as severe autism, but his amazing skill of memory and retention of skills just surprises us all the time. He has learnt through therapy programmes how to read, his alphabet, colours, numbers, shapes but his verbal expression is pretty low. He can make his needs met. He can ask for a juice or sandwich, but he couldn’t tell me what he’s done today.”

Wendy Duff,

“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.”

Hilary Stace,

“A lot of us do notice a lot of detail. That is a typical feature of ASD, and sometimes those details of course are important to be noticed. That makes us very precise workers, for instance, in certain jobs when an eye for detail is required.”

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 ASD’s a real advantage in those situations because I think there are certain skills that a Chair needs in terms of keeping order, in terms of making sure that people have a chance to have a contribution, but do that in a very structured way.”

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 whānau

·        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 ASD. In December 2007 the United Nations passed a resolution to make April 2 every year World Autism Awareness Day.  The intention is to increase awareness of autism and the importance of early diagnosis and treatment.

Contacts

For health and disability-related queries

Lester Mundell

Chief Advisor (Disability Services) & Director IDCC&R

Health & Disability National Services Directorate

Ministry of Health

lester_mundell@moh.govt.nz

Phone: 04 496 2371

Pat Tuohy

Chief Advisor – Child and Youth Health

Ministry of Health

pat_tuohy@moh.govt.nz

Phone: 04 496 2373; 021 313124

For education-related queries

Joanna Curzon

Team Leader Research

Professional Practice

Ministry of Education

joanna.curzon@minedu.govt.nz

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

ï‚· Cabinet approved the ASD implementation plan and the Ministries of Health and Education

ï‚· We are pleased to announce that the Ministry of Health has made progress against the

ï‚· Living Guideline

 Delivering on the ‘investment’ activities, consolidating initiatives and incorporating measures

ï‚· Development of ASD Recognition, Referral and Diagnosis Handbook

ï‚· Autism Spectrum Disorder Training package for Specialists

ï‚· Autism New Zealand contract for resources for Home and Community Support Providers

ï‚· Needs Assessment Service Co-ordination (NASC) ASD Service Enhancement Programme

ï‚· SPELL evaluation

ï‚· Bright Sparks

 ‘tips for autism’

ï‚· ASD-specific parent education: jointly purchased by the Ministries of Health and Education

ï‚· Feasibility Study for ASD specific Behaviour Support Services

ï‚· Auckland based Family and Whanau community outreach services

ï‚· Auckland based ASD specific communication and behaviour services

ï‚· Develop other respite models

ï‚· are working on the assessment and diagnosis handbook (with an external reference

ï‚· working with the Implementation Advisory Group to consider the principles to underpin

Some notices 

Hope everyone’s holidays have been good? I have really enjoyed taking time out and recharging the batteries with my family here in Blenheim. But in truth, my New Year has started with a bit of sadness. One of my heroes, Helen Suzman, M.P has died. It’s a funny feeling as I never met Helen Suzman (she was a South African M.P) but I’m sad just the same. Let me tell you briefly why.

Helen Suzman was an M.P in the South African Parliament during 36 years of the most challenging times in that country’s history- namely, the Apartheid era. And what was so special about Mrs. Suzman was that for 13 years, she and the party she founded, the Progressive Party, were the only opponents to that system in the South African Parliament. Helen Suzman was very much ‘on her own’ as she opposed apartheid, and other members abused her and told her she was wrong to do so.

But she carried on. The thing I most like about Helen Suzman’s approach to opposing apartheid was that she realised that ANY issue was an apartheid issue (partly because many African people who could not vote would come to her and ask her to ‘put their case’ in Parliament.) She would speak on the vast majority of ideas put before Parliament- often as the only one with her liberal point of view. And she did it because she believed in universal human rights for people.

Helen Suzman retired in 1991, by which time South African’s were starting to make changes in their society to make sure that the values Helen Suzman stood for: non discrimination, autonomy, human rights, were being brought into society.

You might wonder what this person has to do with autism? For me, Helen Suzman is a fine example of how a consistently powerful message, delivered by one or two people, CAN make change. She also is a fine example for me of how we should listen to and value the perspectives of ALL people, as the ‘one person giving a diverse view’ may be right. She also epitomises what people in authority and leadership (especially in places like Parliament) should do and be in my view- principled and pragmatic. Her work, which she undertook forcefully and ‘In No Uncertain Terms’ (this is the title of her autobiography which I recommend) is an example to everyone- and this is why she is a hero for me. Her leadership example is certainly one I try to follow.

Rest in Peace, Mrs. Suzman.

Hello, 

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America.

At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year:

 1) Supporting and Empowering autistic adults,

2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and

3) Balancing the Research Agenda in Support of Quality of Life.

You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.  Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community. 
Nothing About Us, Without Us!

Regards, 
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530__._,_.___

Dear President-elect Obama:

On behalf of the Autistic Self-Advocacy Network, we would like to provide your office with the attached policy recommendations addressing our top three public policy priorities for the new administration, as per the requestmade by your transition team. The Autistic Self-Advocacy Network is an international civil rights advocacyorganization of autistic people across the lifespan advocating for our community in public policy, service-delivery,research and media representation. Our organization is unique amongst autism advocacy groups in that we are run entirely by and for autistic people, the all too often unheard stakeholder in autism policy.

We want to applaud your efforts to ensure that this will be a fully inclusive and transparent transition process andhope that the same spirit will govern the upcoming administration.  As 2009 begins, autistic people across the country and the world continue to face many obstacles preventing the full realization of quality of life,communication, rights and opportunity. The public conversation about autism continues to be one that is held largely without autistic people, who should be the central stakeholder. It is necessary to implement the central tenet of the disability rights movement, “Nothing About Us, Without Us,” in our community.

Furthermore, numerous service-delivery and rights protection infrastructures designed to protect individuals with disabilities are not yet proficient at meeting the needs of autistic people across the lifespan. This must change. At the same time, it is also important that we not disconnect autism issues from the values and principles of the cross-disability rights movement. With that in mind, we have been active participants in the consumer-led Disability Leaders Caucus alongside other disability rights organizations such as the American Association of People with Disabilities, theNational Coalition for Disability Rights, the Special Olympics and other groups. We wholeheartedly endorse and are proud to have helped to develop the recommendations of that coalition alongside our own more specific recommendations focusing on the top three priorities of the autistic community.

Our top three priority areas are as follows:

1. Support and Empower Autistic Adults

2. End School Abuse and Ensure a Free and Appropriate Public Education for All Students on theAutism Spectrum

3. Balance the Research Agenda to Support Quality of Life

We have included a one page description of each priority area as well as recommendations on specific means of policy implementation. Please feel free to write to us if you have any follow up questions and we look forward tocontinuing to be a part of the policy process under the incoming Obama Administration.

Regards,Ari Ne’eman 

President

The Autistic Self Advocacy Network

Support and Empower Autistic Adults:

Current CDC statistics estimate the ratio of autism spectrum diagnoses amongst children at 1 in every 150. Systems designed to meet the needs of adults with disabilities are unprepared to deal with the large numbers of identified students on the autism spectrum preparing to transition into secondary and post-secondary environments. We must work to help high schools and adult services infrastructures meet the needs of autistic adults. Furthermore, a growing number of studies analyzing factors such as diagnostic trends, IDEA statistics and other factors suggest that rather than an “autism epidemic” what we are seeing is increasingly accurate diagnosis of previously un- or mis-identified individuals due to better diagnostic criteria and awareness. As such, there exists a large population of un-diagnosed or only recently diagnosed autistic adults whose needs must be met.We recommend the following:

▪ Ensure that autism health insurance reform addresses the needs of all autistic people – including coverage of methodologies such as speech and occupational therapy and Augmentative and Alternative Communication(AAC), as well as adult needs such as mental health services and vocational counseling programs.

â–ª Increase capacity of existing disability service-delivery and rights protection infrastructures to meet the needs of adults on the autism spectrum by:

-Ensuring that future re-authorizations of the DD Bill of Rights Act, the Rehab Act, IDEA and other major disability service-delivery and rights protection laws incorporate language requiring covered infrastructures to increase capacity and expertise needed to serve individuals on the autism spectrum across the lifespan.

-Work with Congress to Pass and Implement an Emerging Needs Protection & Advocacy Program as well as other initiatives discussed in Sen. Clinton’s Expanding Promise for Individuals with Autism Act. (S.937)

-Fund pilot programs to develop models for emulation on issues like employment supports, housing, socialsupports, post-secondary transition, community integration and other issues of importance to autistic adults.

-Appoint individuals knowledgeable in autism spectrum issues to lead OSERS, OSEP, ODEP, the DOJ Disability Rights Section and the EEOC.

â–ª Aggressively enforce disability discrimination laws in regards to autistic people across the lifespan.

-Direct the EEOC and DOJ to develop technical assistance materials outlining the rights of and frequent accommodations for autistic adults in contexts such as employment and interaction with police.

-Fund an extensive outreach program to inform autistic adults and families about relevant rights.

-Convene an inter-agency advisory group on the civil rights of autistic people across the lifespan, includingrepresentatives from self-advocacy and family organizations.

â–ª Work to address the lack of physicians knowledgeable enough to accurately diagnose adults on the autism spectrum by providing funding to improve medical education about the autism spectrum across the lifespan.

▪ Provide states with incentives to address the needs of autistic adults of all kinds across the lifespan. Models to  explore include the Pennsylvania Bureau of Autism Services and the Florida CARD system.

â–ªEnsure that all task forces, commissions, committees and other entities tasked with making autism policy include substantial representation from autistic self-advocates.

End School Abuse and Ensure a Free and Appropriate Public Education for All Students on the AutismSpectrum

Our nation is facing a critical civil and human rights issue with respect to the education of students on the autism spectrum. The frequent use of restraints, aversives and seclusion place students with disabilities, including those onthe autism spectrum, in the position of being abused in the name of treatment. Students with disabilities are at risk and students on the autism spectrum, who often have significant challenges in communication and social interaction,are at particular risk of many kinds of abuse. States across the country continue to allow methods that include pronerestraint, electric shock, slapping, seclusion and other unethical and dangerous methods. This must end. Despite a requirement that all students with disabilities be educated in the “least restrictive environment”, students on the autism spectrum continue to face rates of school segregation over three times higher than those faced by otherstudents with disabilities. For too many students, the promise of inclusion remains far away. Not only has enforcement of relevant special education law civil rights provisions been lax to non-existent in many jurisdictions, but recent judicial decisions have weakened the ability of parents to fight for the rights of their children.We recommend the following:

â–ª All federal laws and regulations which protect persons – of all ages – with disabilities from abuse in institutionaland treatment settings must also be applied to schools – all schools: public, private, day, residential.

-Issue an Executive Order implementing circuit court decisions stating that the Developmental Disabilities Bill of Rights Act applies to schools and should be enforced through all available measures. Clarify that aversives, seclusion and non-emergency restraint are in violation of the DD Bill of Rights Act.

-Place responsibility and budget funds for enforcement of laws protecting students with disabilities from abuse in HHS rather than USDOE, as HHS is better equipped to ensure proper enforcement.

-Fully fund the Protection & Advocacy (P&A) system. Have USDOE instruct state DOEs not to retaliate infunding against P&A agencies for seeking to enforce the law against schools that violate it.

▪ Transfer responsibility and budget for enforcement of IDEA complaints from USDOE Office of Civil Rights to the USDOJ  Civil Rights Divison. Failing this, transfer responsibility for complaints including acts of retaliation and intimidation against parents by school districts to USDOJ to address the more egregious illegal activity.

â–ª Ensure that IDEA is fully funded and that implementation of said full funding comes along with program andfiscal audits of IDEA funds to ensure effectiveness, quality and freedom from abuse in implementation. Precedent for program and fiscal audits of federal education funds exists from similar auditing in NCLB.

â–ª Create a National Technical

assistance to school districts on effective and inclusive educational practices for students on the autism spectrum and to develop teacher training programs to help prepare teachers for all subjects and grades on the needs ofstudents on the autism spectrum.▪ Restore IDEA’s due process rights, allow reimbursement to prevailing families for expert fees, and place the burden of proof in IDEA challenges on school districts.

▪ Instruct the Office of Special Education Programs to issue a “Dear Colleague:” letter clarifying that students should be eligible for an Individualized Educational Plan on the basis of social as well as academic challenges.

â–ª Instruct USDOE to embark upon a nation-wide bullying prevention program through the use of technical assistance to schools and the funding of studies on effective means to reduce bullying, harassment and violence.

Balance the Autism Research Agenda to Support Quality of Life

The autism research agenda has been near-exclusively focused on causation and cure, two priorities out of step with the needs and desires of the autistic community. In the year 2008, only approximately 1% of the NIMH autismresearch budget was allocated towards services-research. In the private foundation sector, the situation is similar,with autism services and education research vastly underfunded in favor of causation and cure research with little impact on quality of life. The priorities reflected in the current autism research agenda send a concerning message.Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for aneffective education across the lifespan. Such a research agenda would compliment other aspects of federal disability policy, such as de-institutionalization mandated under Olmstead v. L.C., the IDEA and NCLB requirements for evidence- and research-based methodologies, the IDEA “Least Restrictive Environment” right and increasednumbers of individuals with disabilities, including the autism spectrum, in the workforce.

We recommend the following:

â–ª Require that no less than half of the federal autism research budget across all departments and agencies,including NIH, CDC, HRSA, HHS, DOL and others, be allocated towards services-research.

â–ª Pursue a vigorous quality of life autism research agenda focused on issues such as improved service-deliverymethodologies, social barriers to full participation and quality of life, effective systems change models, means ofeffectively and respectfully addressing social, behavioral, emotional and other challenges, empoweringcommunication and other priorities.

â–ª Mandate that the Inter-Agency Autism Coordinating Committee (IACC) include representation from autistic self-advocacy organizations, such as the Autistic Self-Advocacy Network, and that there exist parity between the number of parent, provider and self-advocate representatives in the public membership to the IACC.

â–ª Fund research into Augmentative and Alternative Communication (AAC) options for autistic people across the lifespan, including Assistive Technology, so as to empower all autistic people to meaningfully communicate.

â–ª Establish a moratorium on federally funded autism-related genetics research until ethical concerns surrounding a possible pre-natal test and eugenic abortion are addressed to the satisfaction of the autistic community.

â–ª Allocate no less than one third of the federal autism research agenda towards the needs of adults on the autism spectrum, addressing the near total lack of research funding towards the needs of this population to date.

▪Fund Community-Based Participatory Research (CBPR) models including autistic self-advocates as full partners at every stage of the research process, from topic selection to study design and implementation. Look to existing projects as models, such as the Academic Autistic Spectrum Partnership in Research and Education( AASPIRE – http://www.aaspireproject.org).

â–ª Provide for Student Loan Forgiveness for services-related and quality of life/participation-based researchersthat is comparable to the loan forgiveness offered for researchers who work on basic science research.

▪ Look to research funded by the National Institute of Disability and Rehabilitation Research (NIDRR) as a model for autism research priorities. 

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

 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.

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.