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

It’s because he’s just the principal you want your local school to have if you have a child who is autistic, or even just ‘different’, or a free spirit, or if your family does not fit the ‘norm’. Bill became principal about the same time as the 1989 Education Act which brought in community governed self-managing ‘Tomorrow’s Schools’, and also had the landmark Section 8 which meant that every child had a legal right to attend their local school. This has been problematic for many schools, but not Thorndon. School camp - no worries. All the kids went and anxious parents were welcomed to go, but some (like me) subtly encouraged to stay at home. Swimming lessons and swimming sports – all had a go, and in our last year I remember watching as a teacher carefully carried a small autistic child into the pool and walked through the water with him to complete the race.

We were lucky that Bill was principal of Thorndon School even before my own little ’special needs’  boy started school. He was already attending the speech therapy clinic next door and it was recommended that he move onto Thorndon School with its unique ‘language unit’ which had evolved at the school. Children from all over the Wellington region with significant speech/language issues enrolled at Thorndon as ordinary students. They each had a half hour daily withdrawal for one to one speech therapy, although sometimes it involved working with small groups of ‘regular’ children to model appropriate behaviour. There was also a speech language therapist who worked across the classrooms to reinforce teaching and learning. Of course this model did not survive the National Government’s 1996 policy of Special Education 2000, but by then my son’s language and associated skills such as turntaking had vastly improved with this targeted and skilled intervention. For Years 1-8 he couldn’t have had a better educational environment.

I had a child who was different (the autism diagnosis didn’t come till many years later) and he didn’t have much language or interaction when he started school. He walked on his tiptoes, spoke occasional phrases referring to himself in the third person and was often echolalic. But the school had multi-level classes and for his first three years he had the same teacher – the wonderful Margaret Rogers.

Many years later I heard about ABA and realised that Margaret was a natural at it, gently but firmly reinforcing the desired behaviour and discouraging the unwanted. I also remember her sensible advice about encouraging reading, at a parent teacher evening. She told the parents that school can teach the basics but it is up to them to show their child a love for the written word and reading and model it whether by reading the newspaper every day, a weekly trip to the library and bedtime reading. She resisted sending reading books home which then became a tedious homework chore, although school library books chosen by the children were encouraged.

Thorndon School under Bill’s leadership was genuinely child-centred and the children all equal regardless of their background or abilities. When my child was stressed it was OK for him to run out of the classroom to watch the school caretaker sweep the leaves, while another child in his class preferred to do her learning standing on her head. My child was a runner and there were three school entrances onto busy inner city streets but there was never a mention of requiring a fence - somehow they all seemed to look out for each other, and what was happening in the classroom or playground was rather interesting and worth staying for.

 Extensive research shows that that there are three things that make a good school:

• effective leadership
• good community/school relationships
• high expectations of successful achievement for all the students.

In my experience this all happened at Thorndon. So what is it about Bill that is special (although he would probably hate that identification as much as ’special needs’ children do)?

Firstly, he’s an enthusiast for education. He was always on the lookout for new ideas and was prepared to try them. Before Bill’s time the school was one of the first in Wellington to have on-site after-school and holiday programmes and a Maori immersion class. In his time it was one of the first to embrace on line learning and become a networked school. There was flexibility so that opportunities could be taken up. So when Nelson Mandela visited parliament, the Thorndon children walked down the road to chat to him. Bill got cheap tickets to take the children to the International Festival of the Arts (my son went to many events) and even the young children went to the opera. They all regularly walked to the city library, participated in the fringe festival and other local events.

He had a knack of employing enthusiastic teachers and particularly good teacher aides. They also seemed to like the school and stayed.

Bill always seemed calm – whether a child broke their leg in the playground, had a meltdown, or in one case threw a rubbish bin at him after smashing a window. Bill told me once that when he graduated from teachers college the male teachers were all given a leather strap to hit the kids. Of course he never used it (although corporal punishment only became illegal in the late 1980s).

He was also not beholden to compliance requirements from the Ministry of Education (which was just across the road) or when ERO came. His attitude seemed to be to do minimal compliance and get on with the real work of teaching and learning. This  infuriated some officials and board members, but good relationships were soon restored. What he did show was that inclusive education was possible, practical and of benefit to all participants, and all those who experienced this first hand at Thorndon have hopefully taken it into their own future.

So thank you Bill, for helping give my son such a good eight-year educational start. I hope that other autistic children find such inclusive schools with other Bill Suttons in charge. I imagine your retirement will be as creative and child centred as your educational career.

Paula Jessop, a Kiwi aspie and friend of mine, was preparing a presentation on ‘Adults with ASD’ recently, and asked us aspies on Facebook, what were ‘The Top Five Things We Want People to Know About Adults on the Spectrum’. The resulting discussion set me off thinking, and I’ve formulated my own list – with contributions from Gabrielle Hogg, Karleigh-Jayne Jones, Rebecca Lumsden, and Leith McMurray.

Anyway, here’s my five things :-

1) That we are human beings first and foremost. We have wishes and dreams, hopes and ambitions, experience love and anger and happiness, the same as NTs do. We may experience them differently, or have different dreams, but the similarities are often stronger than the differences. Sometimes it’s too easy to perceive our behaviour solely through the distorting lens of ‘they’ve got this Condition’. As Rebecca puts it – “Not ALL our behaviour is autistic, sometimes I’m just having a bad freaking day.”

2) If you’ve met one person with autism, you’ve met one person with autism. “Every person with autism is an individual, our autism is expressed differently for each of us.” (Rebecca) Autistics are not all maths geniuses (I’m certainly not!), computer nerds, train-spotters, and/or lovers of fantasy/science-fiction. Nor are we all (or even mainly!) recluses and obvious ‘oddballs’, social rejects with no sense of humour and a lack of personal hygiene. Many hold down jobs, or are married and/or raising children. Some of us have become very good at concealing our autism to ‘fit in’ (it’s still there underneath of course). And some of us are female. As Gabrielle points out, “ASD looks different in women.” A stereotype is just that – a stereotype.

3) Autism is a Developmental Disorder. Our development is delayed, meaning that we often can’t do things at the ‘normal’ age, but this doesn’t mean we will never be able to do it. It might just take us a whole lot longer. “Adults with ASD still may need help in independent living skills… [and some] may need help with communication issues… having a communication device may help them to become more independent!” (Gabrielle) Nonetheless, we are capable of much more than people think. “Don’t underestimate us cause with the right support, we can do awesome things.” (Karleigh-Jayne)

4) Many of us have other, ‘co-morbid’ conditions as well. (Gabrielle) This of course complicates the individual picture! These ‘co-morbids’ can include any or several of the following:- Dyslexia, dyscalculia, dysgraphia, dyspraxia, hyperlexia; ADD/ADHD, sensory processing disorder, auditory processing disorder, prosopagnosia, executive dysfunction, communication difficulties; bipolar syndrome, depression, anxiety disorders, social avoidance disorders, alexithymia. All these also occur without autism, but there is a high correlation. Most we are born with, but some are acquired through living in a world we find confusing, overwhelming, discouraging and unaccepting, eg depression. But never assume that a difficulty you have with an autistic person is due solely to the autism – it may be because of the ‘co-morbid/s’. Sensory issues especially “can make life hell!” (Gabrielle) Autism can also occur with unrelated conditions – I have heard of autistics who are blind, deaf, Downs Syndrome or physically disabled.

5) Autism means a different ‘mindset’. We act differently because we think, react, and feel differently to NTs. This different mindset is ‘hardwired’ into us, and can mean – i) A focus on things rather than people, especially our ‘special interests’. ii) An often extreme perfectionism, and rigidity of routines – “Please don’t make plans and change or complicate them at the last minute! Make sure that your aspie friend knows exactly what to expect at an event/appointment etc.” (Leith). iii) A lack of any instinctive ability to ‘read’ other people, which can make us appear ‘rude’ or ‘arrogant’. “Bluntness in speech may cause offence, this is not malicious… It is quite ok to point this out to an aspie (politely) and suggest it be re-phrased or recognised and apologised for… Emotion neutral is the way to raise problems with an aspie.” (Leith) iv) Social difficulties and sensory overload means we can get overwhelmed easily, which leads to shutdowns or meltdowns. This is often beyond our control, so, as Leith points out, “Quiet and patience are the only tools to use, and it may take a couple of days for us to fully recover!”

And above all, remember – “We may not appear stressed, but interacting with NTs is way more stressful than they might imagine.” (Leith) A spoonful of simple kindness goes a long way.

Thanks to Penni and all the others who contributed for allowing this to be reprinted here on humans.

2009 started off beautifully for my family. I gave birth to our third baby in as many years that February, a beautiful baby girl we named Isabella, and life continued on at its usual frenetic pace for me as the stay at home Mum of three children so close in age. Bella’s big brother Stephen and big sister Micah adored their “baa sissy” (baby sister), and all seemed right with the world.

One Friday afternoon soon after she was born, I dropped Bella off to my Mum and Dad’s place so I could go pick my husband David up from work, and Stephen and Micah from preschool. There was a note for us beside Stephen’s name on the sign-in sheet to please see the centre director. A little confused, we found her in Stephen’s room, along with the head teacher of that room, wanting to have a chat with us about Stephen’s development. He had developed normally and as expected up until the time he was about 16 months old, then he lost a lot of the language he had previously acquired and became sullen, withdrawn from the world, and found it very uncomfortable making eye contact with people. Being our first child, we had no benchmark, and thought perhaps it was just a phase he was going through, that he would return to his normal bright, engaging self in time. We shared this with the centre director and head teacher, and they in turn gave us a list of their concerns about how Stephen was doing – he would jam himself into impossibly tiny spaces to escape the hustle and bustle of the classroom on a regular basis, his speech was minimal and was more or less repetitive, indecipherable baby babble, he had no social awareness and would aimlessly wander round the classroom, not wanting to play with the other children, preferring to inhabit his own little dreamland. The list went on. I was shattered beyond words, and went into a period of intense grieving. I berated myself at the time for being silly, but have since found out there was a lot of unspoken mourning going on in my family, and that I wasn’t alone in my sadness.

Through this fog, I realised I needed to get Stephen into our GP so referrals could be made to the right people, and we could get some answers as to what was going on with him. The GP immediately agreed something was quite remiss with Stephen and duly sent off three referrals to our local hospital – one to the paediatrics department to assess Stephen’s development as a whole, one to the ophthalmology department to check the cause of a sudden onset squint he had developed a couple of months previous, and one to the ENT/audiology department to see if the cause of Stephen’s delayed speech was perhaps a hearing problem. Letters came back advising us he was on waiting lists for all three services, so we sat back and waited patiently for Stephen’s number to come up, as it were. The audiology and ENT departments were the first to contact us with an appointment, and while Stephen was unwilling to co-operate with audiological testing, the ENT specialist was able to deduce Stephen suffered from quite significant glue ear and he had surgery to insert grommets within a matter of weeks. The wait for appointments with a paediatrician and ophthalmologist continued.

In amongst all this uncertainty, Stephen celebrated his 3^rd birthday, we heard he was to finally be reviewed by the paediatric ophthalmologist, and he had his 3 year Plunket check. The Plunket nurse was straight up with me – “Kate, to me it looks like Stephen has some form of high-functioning autism”. I was by then in a place where I could accept what she was telling me, rather than brush off her concern. She also made a referral to Special Education, for Stephen to receive early intervention, speech language therapy and teacher aiding services.

The day of Stephen’s appointment with the paediatric ophthalmologist came around fast. I got my Mum to come with me; Stephen was quite a handful to take out in public by myself and I appreciated her help. I thought the appointment would be pretty straightforward, maybe Stephen would need a patch to help correct the squint, and that’d be it.

How wrong I was.

The ophthalmologist did a few checks on Stephen, popped some dilating drops in his eyes, and we were called back after half an hour for him to take another look at Stephen. My heart leapt up into my throat and tears stung at my eyes as he told us he was observing substantial bulging and swelling around the optic nerves at the back of Stephen’s eyes, that he was ringing the paediatrics team in the childrens’ ward, and that we were to go there immediately after our appointment with him. I kept moving and talking but inside I was numb. I didn’t have a medical background but I knew those symptoms suggested my precious little boy had a brain tumour.

For the next handful of days Stephen and I spent our days at the hospital while he had a battery of tests, including a CAT scan, a lumbar punch, several blood tests, and eventually a MRI scan. David had to attend a block week for the Diploma in Teaching which he was (is!) studying by distance in the middle of it all, so as he wasn’t able to support me, my parents agreed between themselves that one of them would always be with me for when, not if, the news that Stephen had a brain tumour came. My elderly grandmother who had had three hip replacements wanted to be seen to be doing her bit supporting our family at our time of crisis, so she came over to our place each day and looked after Micah, who wasn’t quite 2 at the time, and Bella, who was 6 months old. It was so humbling and heartwarming to have so much love and support at a time where I felt like I was dying inside all over again.

I prayed around the clock for my wee dude and continued doing so as he was put under anaesthetic for his MRI. He had been put through so many invasive procedures over the preceding few days and lashed out as we held him down to go through another. I tried to be staunch for Dad, he was with me and found the whole procedure very upsetting. We sat outside the room where the MRI was being done in the silent, sad knowledge we’d know for sure that Stephen had a brain tumour soon. The radiographer called me as Stephen was waking up and quietly whispered “we found no sign of any sort of a tumour” to me as he passed by. No tumour? My prayers had been answered! But what was it that was making Stephen present with all the symptoms of a brain tumour then?

We went back to the childrens’ ward and the paediatrician and paediatric registrar who had been looking after Stephen confirmed to us that Stephen didn’t have a brain tumour. Tears came again; this time though, they were tears of happiness. Instead, he had a condition called idiopathic intracranial hypertension (commonly known as IH), which is a neurological disorder not very often found in children, especially those as young as Stephen was. He didn’t need to have a shunt inserted to relieve the pressure (thankfully), and the condition has carefully managed and monitored by Stephen’s paediatrician.

So it was through Stephen’s brush with IH that we got in the back door with the paediatrician. Once we got Stephen on an appropriate course of medication for his IH, I raised the issue of Stephen’s many autistic tendencies, and his paediatrician agreed it was certainly something that warranted being looked at in depth. It was about this time too that we heard from Special Education. An early intervention teacher came over to our place and did a series of assessments on Stephen, all of them showing deficits in areas that positively screamed autism. By now, I knew in my heart Stephen was autistic too and in a strange way it gave me satisfaction to know I wasn’t imagining some of the things that were going on in his life. I looked forward to sitting down with his paediatrician and hopefully getting an official diagnosis for Stephen.

The date for that official assessment came and I will never forget it – 26^th November 2009. I look on that day as the first day of the rest of Stephen’s life. The paediatrician quickly proffered a diagnosis of high-functioning autism, high-functioning meaning that Stephen isn’t as badly affected as others on the autism spectrum. I was delighted, and you might think that strange, but we had that answer we had been seeking and it was the key to Stephen receiving many services he was entitled to.

We were also very fortunate to have a switched-on advocate in the form of Stephen’s early intervention teacher, who sent out referrals to our local NASC so that Stephen might receive some respite care, in addition to letting us know about other services like Riding for the Disabled. We were incredibly grateful as parents of newly-diagnosed children often feel like they’re left to discover a lot on their own accord. At about this time, Stephen was also diagnosed as being vision impaired and was accepted onto the roll of the Southland vision resource centre, who are a satellite campus of BLENNZ (Blind and Low Vision Education Network New Zealand). Stephen’s resource teacher vision (RTV) has been another godsend in helping to make the environment at preschool more user-friendly and accessible for Stephen as a vision-impaired learner, as well as being a vital member of Stephen’s “support crew” who is vitally, and genuinely, interested in Stephen’s health and welfare.

From then on in, I’ve been armed with a passion to learn as much as I can about the conditions affecting Stephen and be as proactive and assertive an advocate as I can for Stephen, which hasn’t come easy or naturally but I’ve made it happen! I linked up with my local branches of Autism New Zealand and Parent to Parent, which has lead me to participate in events like the Southland May Day disabilities expo in 2010 and 2011, the Parent to Parent 2^nd Generation workshop in Auckland in July 2010, the Autism New Zealand national conference in Wellington in September 2010, and more recently, I’ve joined the Special Education Southland parent reference group as the represetative of a service user in an early childhood setting, and have just completed a series of four workshops facilitated in Wellington by SAMS, called Partners – Influencing Change, which helped me to learn more about being an effective advocate and how to go about making meaningful change in the disabilities sector. I’m also the secretary/treasurer for the Southland branch of Autism New Zealand. So life sure is lived at breakneck speed for my family and I! I am very lucky to have the unwavering support of my extended family who are always willing to step into the breech and help where and when needed, as well as the love and strength of David. We’ve been together for 13 years and married for 8 of those this year, and while raising three children -including one who happens to be autistic- so close in age can be pretty tough, we sometimes have to stop and remember our relationship was the rock on which we built our family, so we have to take the time to keep it strong and durable against the battering tide of life and the highs and lows that come with it.

Looking back, I came full circle from being in complete denial to openly embracing the reality of us having an autistic son. It’s something I’ve never hidden and I’m unbelievably proud of the progress Stephen’s made and continues to make each and every day. He receives help from an early intervention teacher, speech language therapist, educational support worker (otherwise known as a teacher aide), paediatrician, occupational therapist, ophthalmologist and resource teacher vision, and has a fantastic teaching team on his side at preschool who strive to provide an inclusive classroom environment for Stephen. He’s treated just like every other child, but with understanding. We love that. We’re now just under a couple of months out from Stephen turning 5 and starting at a mainstream school. We’ve just found out our application for ORS funding for him from the Ministry of Education was successful, and it’s a huge relief to know he’ll have the help and support he requires to make a successful transition from preschool to school. He’s the most wonderful little boy and we’re blessed to have him in our lives.

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.

In the full print story, Latta dishes out jumbo servings of his usual faux common-sense parenting advice, lurching into this bizarre statement:

“But I’ve been around the family area more than 20 years, long enough to watch fads come and, and now there are huge numbers of kids being told they have features of autistic syndrome disorder [sic].

“Without doubt, autism exists. I’ve seen good research on that. But people who don’t know enough about it are diagnosing it. I don’t know enough about it to diagnose it or work with children who have that diagnosis, but I know people who know a lot less than me who are diagnosing it – kindy teachers, teachers, psychologists, therapists.

“This is a small country, with a small number of people qualified and able to diagnose this. Right now, there are lots of kids who are not autistic, they are just different, but what happens is these parents have these labels thrown at them.”

So Latta, who can’t even get the name of the condition right, knows more than those unnamed “psychologists” and “therapists”? I think it’s actually quite clear he doesn’t, and that he knows very little about how ASD diagnoses are actually made in this country.

“Just different,” can indeed be a reasonable proxy for autistic spectrum disorders at the milder end of the spectrum, but that hardly means a diagnosis is irrelevant. In my experience – and I have two very different children diagnosed as Asperger Syndrome via very different routes — a diagnosis, correctly given, is a gamebreaker.

It is but a systematized collection of related symptoms – not all of which will apply to your child – but it gives you somewhere to go. Somewhere that will almost certainly lead to something better than Latta’s feeble “common sense”. So allow me to point out to Nigel Latta that children who are “just different” may well have a very different idea of what is common and what makes sense.

Update: The full story has finally been published online.

 So began a lifetime of therapy. Getting him out of hospital was hard enough, as his feeding was very difficult to establish, and we were mostly feeding him expressed milk through a nasal gastric tube. But we stuck at it, and finally got the little man home.

 Auckland hospital provided a physiotherapist who came to the house, as it was seen as highly likely Marcus would need extra care. Likely turned to certain as he developed, and continued to be well below his age for weight and gross motor development. We were encouraged to learn as much as possible from the therapist who opened our eyes to the tender art of weaving therapy into every activity.

 Curiously, the underdevelopment of gross motor led to heightened development of other areas. Marcus never crawled, probably on account of weak arm and shoulders, so he spent a lot of time sitting in one spot playing intensively with toys, and learned very quickly that he could use his mouth to get various things. He talked well before he walked.

 Because the cause of his stroke was never known for sure, and could not be attributed to a pre-existing condition, we were encouraged by the obstetrician to make an Accident Compensation Commission claim for him. I’m often struck by just how different things might have been in a country where medical accidents can only be compensated for by suing the doctors, who are likely to deny that it was an accident to whatever extent they can – but here the very doctor who delivered him was instrumental in pushing for the successful claim, and Marcus now has lifelong coverage for pretty much all costs which are linked to his accident.

 Upon the acceptance of the claim, the level of care for Marcus jumped hugely. He started to receive regular visits from physiotherapists, occupational therapists, speech and language therapists, and dieticians. He has made huge progress in every area, putting on weight, gaining strength, learning to crawl, walk, run, climb, use toys that require hand and finger strength, learned to talk about what he is doing, what he has done, and to plan what he will do.

 But he has shown for over a year now some features that led his pediatrician to give a tentative diagnosis of  ‘on the autism spectrum’. This manifests in familiar ways, that he prefers highly repetitive activities, loves to repeat long lists of things he has learned by rote, takes very little notice of other children, and generally avoids contact with them. For instance, he would often sit and play with the telephone book for up to an hour, just flipping through the pages. Or he would speak to anyone who would listen at great length about ‘Mouskatools’ which he had seen on TV, pretty much repeating the lists over and over. Or he will just stand giggling and flapping his arms, staring at a wall, for many minutes at a time.

 The therapists have generally sought to discourage this kind of behavior, typically by encouraging him to do something else more ‘constructive’. They even made the harsh call of suggesting we take books away from him for a while, because they were distracting and he was not using them as books, but as tactile toys. A bit of soul searching was required for that. This worked out very well in the end, though, his range of play expanded very rapidly after the week or so it took him to get over the fact that there was not a book to be found anywhere. We’ve given them back now and his obsession with flipping the pages is gone.

 It is always hard to know just how much of the improvement comes from therapy, both direct from the therapists, and what we have learned to apply, and how much of it comes directly from Marcus, who has a stubborn nature which enables him to persist at tasks until he attains some kind of mastery. My opinion is that it is all of these things, that therapy has helped a lot, that his persistent nature could be nature’s response to his accident, as well as somewhat innate, and that our trust in the therapists and attempts to incorporate their teaching into everything we do with Marcus, have all contributed to his ongoing improvement. I’m very hesitant to generalize anything about Marcus to other autistic children, and can only say what we’ve done that has helped to encourage development towards a stronger, more able child who can handle socialization.

 It’s been very hard for me to finish this story, the above paragraphs were written months ago, and yet I could not commit to publishing it. I guess I have to be honest that I’m conflicted about the condition itself. Marcus is only ‘mildly’ autistic, and it’s possible that love makes me blind, so that I only see the things he does that indicate autism as parts of his character. It seems rough to want to train these things out of him. And yet, the training has seemed to work, the features that seemed autistic being generally discouraged (usually by changing the focus of the activity when he seems to have fixated on something), has expanded his range of play, talk and movement. I have no idea how much of this would work with other autistic children, in whom the condition is more innate, and more severe. Each child is different, but all are beautiful, all need the time and love of their family. However they turn out.

Ben Wilson

 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.)

Autism Spectrum Disorder

June 2009 Newsletter 

This newsletter brings together information about the progress being made to improve autism services for people in New Zealand from some of the key groups who have been involved.  It updates the information that was provided in the March 2009 newsletter. The last newsletter was structured by organisation.  This newsletter is structured by the areas where progress is being made, and references the key parts of the New Zealand Autism Spectrum Disorder Guideline (NZ ASD Guideline) that are being worked on.  This newsletter focuses on activities that are coordinated nationally.  But the NZ ASD Guideline belongs to everyone in the ASD community, and its implementation cannot rely on what is done nationally.  Indeed, any implementation is in the end done by people in their local communities and families.  If you have been involved in a project or activity that helps to implement the NZ ASD Guideline and you would like to share that experience, then please let us know.  You can contact the New Zealand Guidelines Group through asd@nzgg.org.nz.  You can use the same email address to ask questions in relation to any of the projects outlined below.

 Implementation Priorities

The Ministries of Health and Education agreed a set of priorities for the next three years of NZ ASD Guideline implementation.  They made this decision after discussions with the ASD Implementation Advisory Group, the ASD Inter-sectoral Advisory Group, and a group of senior officials from a range of government departments. The priority areas are (not in any particular order): 

1. Assessment and diagnosis
2. Support to strengthen families
3. Interventions
4. Respite
5. Coordination

The next parts of this newsletter provide updates on the projects that are underway in each of these areas. 

Assessment and Diagnosis

There are five projects currently underway in this topic area.  They are: 

1. Development of a handbook for assessment and diagnosis for education and health specialists involved in performing assessments and making diagnoses

·         Leading organisation: NZGG, supported by an expert reference group

·         Goals: a.      To provide education, health and disability practitioners with a cut-down version of the NZ ASD Guideline, targeted at them, and focused on assessment and diagnosis.  b.      To provide options for the dissemination of the handbook.  c.      To provide analysis of options available for tools that will assist the standardisation of assessments.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Part One of the NZ ASD Guideline. Also 2.3.02 – 2.3.15, and the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·         Status: The handbook has been drafted.

·         When can you expect to see something from the work? The content should be completed by the end of June 2009.  It will be accompanied by a paper that provides options for the distribution of the Handbook; which should occur prior to Christmas 2009. 

2. Development of training materials for specialists in the assessment, treatment and management of ASD

·         Leading organisation:  Werry Centre, supported by an external reference group

·         Goals: to develop a training resource for specialists (paediatricians, psychiatrists, clinical psychologists & educational psychologists) in the assessment, treatment and clinical management of ASD for young people aged between 0 and 19.

·         Links to NZ ASD Guideline Recommendations: All recommendations from Parts One and Four of the NZ ASD Guideline, the sections of Part 6 that relate to specialists, and relevant recommendations from Parts 7 and 8 relating to the involvement of Maori and Pacific carers in the assessment process.

·       Status: The Specialist training package is in its final stages and currently being reviewed by the Ministries of Health and Education. Once the training package is finalised further work will be required to scope how it will be implemented (delivered).

·         When can you expect to see something from the work?  The final draft of Specialist training package is expected by the end of June 2009. An implementation plan will then be established so that the training can commence.  

3. Review/ Revision of core Needs Assessment and Service Coordination (NASC) Standards, Protocols, Guidelines and Practice Resources

·         Leading organisation:  Needs Assessment Service Coordination Association Incorporated (NASCA)

·         Goal: To enhance NASC practice through reviewing and updating its existing standards and guidelines and good practice resources

·         Links to NZ ASD Guideline Recommendations: Broadly takes into consideration all parts of the NZ ASD Guideline

·         Status: Project well underway. A review of the key NASC documents is underway.  Workshops with NASC managers occurred in May and a stakeholder workshop is planned for June.  The workshops aim to test out findings from the document review and gather feedback on issues.  Further workshops will occur in late June to provide input to the development of the final report and implementation plan

·         When can you expect to see something from the work: A final draft of the revised NASC Standards and Guidelines is due in early July 2009. 

4. ASD Specific Guideline for NASCs

·         Leading organisation:  NASCA

·         Goal: To develop a new ASD-specific Guideline for NASCs

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8.

·         Status: The project has started. Peer review workshops with NASC managers occurred 21/22 May and a stakeholder workshop (with consumers and front line NASC staff) occurred on 29 May, with the aim of getting input into the design and development of the ASD-specific Guideline for NASCs.

·         When can you expect to see something from the work: Finalised ASD-specific Guideline for NASCs will be completed by the end of June 2009. 

5. Development of NASC Resources

·         Leading organisation:  NASCA

·         Goal: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASCs.

·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project well underway. This project is working in parallel with the development of the ASD-specific Guideline for NASCs, as the resources will need to support the ASD NASC Guideline. Peer review workshops with NASC managers occurred on 21/22 May. Valuable information on existing resources was gained as well as the need for robust tools and resources to assist in ensuring that the ASD NASC Guideline is implemented. A workshop with stakeholders (consumers and front line NASC staff) occurred on the 29 May with the aim of getting input to the design and development of the ASD Resources.

·         When can you expect to see something from the work: Resources will be developed by mid July 2009. Training for NASC staff in the new NASC ASD Resources will commence in July 2009. 

Support to Strengthen Families

There are five projects currently underway in this topic area.  They are:  

1. Improving information and advisory services

·         Leading organisation:  Altogether Autism

·         Goals: To ensure that that NZ ASD Guideline and its messages and recommendations are widely distributed amongst the ASD community.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.3, and the recommendations from Parts 7 and 8 relating to the language-appropriate information provision.

·         Status: Altogether Autism has been funded to support communication of the NZ ASD Guideline.

Activities undertaken include:

                                               i.            Website development 

                                            ii.            Targeted media follow-up

                                          iii.            Developing promotional packs for stakeholders

                                         iv.            Identifying conferences for communicating the NZ ASD Guideline

                                           v.            Distributing conference materials

                                         vi.            Library development

                                        vii.            One off training for professionals

                                      viii.            Evaluating the reach and effectiveness of the NZ ASD Guideline distribution 

Additionally: 

                                            i.            Pod casts are being been developed for the website which will soon include audio and video files for download of lectures and talks undertaken for Altogether Autism. Pod casts will also include people’s experiences of living with autism. These will be accessed from the Altogether Autism.

                                           ii.            Altogether Autism has developed a reference library accessible to the public.                                           iii.            Training for professionals using a tool called ADI-R is planned for August and September in Hamilton and

                                         iv.            In May a questionnaire has been sent to a sample population of the people who were sent the guideline for feedback on the guideline.  The feedback will assist future communications and planning. Feedback from the survey will be analysed by the end of June. This will inform the Ministries of Health and Education about areas to target further distribution of the NZ ASD Guideline. 

2. Parent Education

·         Leading organisations:  Ministry of Health, Ministry of Education

·         Goals: To provide quality-driven parent education programmes that will improve parents’ knowledge of the impact of ASD. Focused on parents of young children (i.e. before the child starts school), the programmes are expected to enhance parents’ ability and confidence to support their children to communicate, manage themselves and interact socially.

·         Links to NZ ASD Guideline Recommendations: 2.2.1, 2.2.2 and 2.2.3, plus detailed information on pages 71 and 72.

·         Status: Currently, the Ministries of Health and Education jointly purchase EarlyBird from Autism NZ. The Ministries have been running an open procurement process from November 2008 until the present.

·         When can you expect to see something from the work? The process is expected to conclude with contract(s) with one or more providers by July 2009. 

3. ‘tips for autism’

·         Leading organisation:  Ministry of Education and Ministry of Health

·         Goal: To extend the reach of the ‘tips for autism’ programme through funding additional programmes and additional facilitators

·         Links to NZ ASD Guideline Recommendations: Overview 2.1, 6.6, 6.8; Part 4, 4.3.3; Part 6: 6.17.

·         Status: ‘tips for autism’ provides teams of parents, carers and school teachers with practical knowledge and skills to support children with ASD who are between the ages of 5 and 12.  Each team completes a comprehensive long term plan and short term goals which they can action the day after the course ends. ‘tips for autism’ was written for the New Zealand context and is regularly updated to reflect new evidence and changing policies.  In 2009 (up until the end of May), ‘tips for autism’ has been delivered in 7 locations (in Manukau (Auckland), Porirua (Wellington), Invercargill, Gisborne, South Canterbury, Hawkes Bay and North Shore  (Auckland)) with a further 11 courses planned (Auckland Central, Christchurch, Stratford (Taranaki), Hamilton, Nelson, Whangarei, Bulls (Manawatu), Central Otago, Taumaurunui, Rotorua and one location to be confirmed). 

 ·         When can you expect to see something from the work?  It is happening right now. Further information and applications for the course are available at www.tipsforautism.org.nz. 

4. SPELL evaluation

·         Leading organisation/s: Kiwikiwi Research and Evaluation Services Ltd, Ministry of Health

·         Goal: To evaluate the success of the SPELL programme.  This will inform the Ministry of Health as it determines whether or not to continue funding the programme.

·         Links to NZ ASD Guideline Recommendations:  2.2.1

·         Status:  The evaluation has been completed and is under consideration by the Ministry of Health.

·         When can you expect to see something from the work?  A draft of the report has been submitted to the Ministry.  It will be finalised in June 2009. Decisions will be made following consultation with the Implementation Advisory Group and the cross sectoral Senior Officials Group. Autism NZ continues to provide this education programme. 

5. Bright Sparks: Programme Enhancements

·         Leading organisation/s: Autism New Zealand (Auckland Branch), Ministry of Health

·         Goals: To build on the positive evaluation of Bright Sparks by further developing and documenting the programme.

·         Links to NZ ASD Guideline Recommendations: Part 5 of the Guideline, 5.2.1-5.2.8

·         Status: Following the evaluation of Bright Sparks; an Auckland community-based recreational based programme for children with ASD, the Ministry has contributed to one-off funding to respond to recommendations contained within the report.

Work is continuing on programme enhancements with the current focus on the access of the programme to Maori and Pacific children and young people and their whānau and aiga.

·         When can you expect to see something from the work?  The work remains on schedule for completion on 30 June 2009.    

Interventions

There are three projects currently underway in this topic area.  They are:  

1. Family/Whānau community outreach services

·         Leading organisation: Ministry of Health

·         Goal: To provide ASD-specific family and whānau community outreach services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 1.1.1,1.4.6, 1.4.7, 1.4.9

·         Status: The Ministry of Health has negotiated a contract with Autism New Zealand. Autism New Zealand will delegate responsibility to Ohomairangi Trust and the Auckland Branch of Autism New

 ·         When can you expect to see something from the work? The new services will be available by August 2009. 

2. ASD-specific communication and behaviour support services

·         Leading organisation: Ministry of Health

·         Goals: To provide ASD-specific communication and behaviour support services to the ASD community in Auckland

·         Links to NZ ASD Guideline Recommendations: 4.3.2, 4.3.4, 4.3.5

·         Status: The Ministry of Health is negotiating this contract at present.

·         When can you expect to see something from the work? The new services should be available prior to Christmas 2009. 

3. Assessment of the feasibility of having ASD-specific behaviour support services

·         Leading organisations:  Bennett & Bijoux Ltd, Ministry of Health

·         Goals: To assess the feasibility, in the New Zealand context, of having behaviour support services that are developed specifically for people with lived experience of ASD

·         Links to NZ ASD Guideline Recommendations: 4.3.7

·         Status:  Bennett and Bijoux have this contract. They have established a Specialist Advisory Group to advise them with this work

·         When can you expect to see something from the work? The report will be presented to the Ministry in August/September 2009.  Whatever steps are taken after that will depend on the findings of the report.  

Respite

There are two projects currently underway in this topic area.  They are:  

1. Extending disability respite services

·         Leading organisation:  Ministry of Health

·         Goals: To increase access to respite services

·         Links to NZ ASD Guideline Recommendations:5.2.6

·         Status: In progress

·         When can you expect to see something from the work?  The Ministry has now signed contracts for the five following services:  i.        Waikato service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

ii.          Bay of Plenty/Lakes (to be located in Tauranga) service for people 17 years of age and over with an intellectual disability and/or ASD – Spectrum Care Trust

iii.         Bay of Plenty/Lakes (to be located in Tauranga) service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

iv.         Hawke’s Bay service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation v.    Wellington service for people under 17 years of age with an intellectual disability and/or ASD – The Open Home Foundation

 These services are currently in set-up phase.  The purchase proposal process is not complete and contracts for the provision of other services may be signed in other areas in the future.  Respite continues to be an important area of priority. 

2. Describing ASD-specific respite services

·         Leading organisations:  New Zealand Guidelines Group, Acqumen Ltd supported by the Implementation Advisory Group

·         Goals: To describe ASD-specific respite services

·         Links to NZ ASD Guideline Recommendations:  5.2.1 – 5.2.8 ·         Status: The paper has been completed and submitted to the Ministry of Health, along with a draft service specification that could be used in any changes to respite services.  The Ministry is now considering how to progress this, within the context of the overall increase in disability respite services.

·         When can you expect to see something from the work?  As it is under consideration, it is difficult to forecast what will happen next.  The Ministry should make decisions prior to Christmas 2009. 

Coordination

There are three projects currently underway in this topic area.  They are: 1)      Business case for DHB Developmental Coordination

 ·         Leading organisations: New Zealand Guidelines Group, Ministry of Health

·         Goals: To develop new resources and tools to support the revised NASC Standards/ Guidelines and ASD-specific Guideline for NASC ·         Links to NZ ASD Guideline Recommendations: 1.2.9, 2.4.1- 2.4.4, 7.3

·         Status: The Ministry has conducted preliminary consultation with child development centres and with the ASD Implementation Advisory Group.  As a result of this work, the Ministry decided to complete a formal business case with options for how best to achieve the outcomes desired by the guideline.  Work has commenced on this business case.

·         When can you expect to see something from the work?  The business case will be available to the Ministry by September 2009.    2)      NASC ASD Coordination 

 ·         Leading organisation/s: NASCA

·         Goals:

a.      To develop and establish a NASC ASD coordination function to support existing staff identify, plan and review packages of service/ supports required to meet the prioritised needs and goals

b.      To improve knowledge skills, attitudes of NASC staff

c.      To support NASC managers and team leadersd.      To improve linkages with and across existing disability support services ·         Links to NZ ASD Guideline Recommendations: Part 1 (overview recommendations 1 &2) Part 2 (overview recommendations 1,2,3,4,5,9,11,12)  Part 3 (overview recommendations 1,2,6 &11), Part 4 (overview recommendations 1,3,&5), Part 5 (overview recommendations 1,2,3,4,5 7,9,10,11,) and generally Part 7 and 8

·         Status: Project started. Initial concepts and approaches have been worked through with NASC managers at peer review workshops in late May. A stakeholder workshop (with consumers and front line NASC staff) occurred on 29 of May aimed at getting input to the design and development of the ASD Coordination Function 

·         When can you expect to see something from the work? The ASD Coordination Function will be trialled from the end of June 2009 with the view of full implementation being completed by June 2010. 3)      Review of interagency protocols (Equipment and Therapy) between Ministry of Education and Ministry of Health for school aged children 

·         Leading organisation/s : Ministries of Health and Education, Acqumen Ltd

·         Goals:  To review the current Equipment and Therapy (physiotherapy and occupational therapy) protocols and make recommendations for revising the protocols within existing policy and resourcing. This includes:

a.      achieving the best outcome for children and young people and their families/whanau

b.      clarifying funding roles and service provision responsibilities

c.      maximising cooperation between agenciesd.      development of complementary roles and responsibilitiese.      assisting families/whanau and fundholders in making appropriate referrals ·         Links to NZ ASD Guideline Recommendations:2.4.1- 2.4.4, 3.2.4.5, 4.1.1-4.1.5

·         Status: Following consultation with key stakeholders and families of students in four locations nationally and feedback from a questionnaire distributed to individuals and key organisations, the protocols are being updated into:

a.      A Memorandum of Understanding

b.      Therapy and Assistive technology/equipment Operational Guideline: Roles and Responsibilities.When can you expect to see something from the work? 30 June 2009.  Once the revision is complete further work is required to scope how the above documents will be implemented  

Associated activity led by the Ministry of Education   In addition to the work that is led by the Ministry in the fields of parent education and teacher support (noted above), the Ministry is also leading the following projects in support of the NZ ASD Guideline: 

1. Living Guideline

·         Leading organisation:  New Zealand Guidelines Group, Ministry of Education, supported by a Living Guideline Group.

·         Goal: To ensure that the NZ ASD Guideline remains up-to-date and relevant as evidence changes.  This process will not add new topics to the NZ ASD Guideline, but keep the current topics up to date.  It will focus on areas where the evidence since 2004 has changed enough to warrant changing a NZ ASD Guideline recommendation.

·         Links to NZ ASD Guideline Recommendations:  Not directly linked to any as this project is about ensuring that the recommendations remain derived from current evidence.

·         Status:  A Living Guideline Group has been convened and met in early June, chaired by Professor Ian Evans (with Matt Frost as the deputy-Chair).  Its first job is to identify topics in the NZ ASD Guideline where the evidence has changed enough to possibly change a recommendation.  Applied Behavioural Analysis (ABA) is one topic that is already confirmed. The Ministry of Education recently funded two literature reviews that can be put through the living guideline process to determine if the evidence identified in the reviews requires changes in the current recommendations about ABA.

·         When can you expect to see something from the work?  The work plan will be with the Ministry of Health at the end of June 2009.  The next newsletter should contain more information about timeframes. 

2. Education ASD Action Plan

·         Leading organisation:  Ministry of Education

·         Goal: To develop a coordinated national plan for professional learning and development, including establishing a network of ‘Go To’ people who will take a leading role in providing evidence-based support and current information.

·         Links to NZ ASD Guideline Recommendations: 6.6, 6.7, 6.9-6.14, 6.16-6.25, 6.27.

·         Status:  The plan has been drafted and consultation is underway.  The draft plan stresses the need for activities to be connected and coherent and affirms that everyone has a role to play in supporting children and young people with ASD to learn, achieve and contribute to society, and outlines support for these roles.

·         When can you expect to see something from the work?  Initial scoping of the associated and detailed work plan will be completed by 30 June 2009.   

3. Early Intervention ASD Project

·         Leading organisation:  Ministry of Education

·         Goals: Exploring the use of the Social Communication, Emotional Regulation and Transactional Support (SCERTS) framework in early intervention in NZ. Specifically, during Phase Two (2009-2010), the goals are:o        Improved outcomes for more children, families and whānau;o        SCERTS effectively adapted and operating in the NZ context;o        More staff with a wider range of skills in providing effective interventions for children with ASD, their families, whānau and education teams;o        Further refining an effective model for providing professional learning and development and sustaining effective practices;

·         Links to NZ ASD Guideline Recommendations: 3.1.1 – 3.1.12, 3.2.1.10, 3.2.2.1 – 3.2.2.7, 3.2.3.1 – 3.2.3.3, 3.2.4.1 – 3.2.4.5, 3.2.5.1 – 3.2.5.3, 6.6 – 6.7, 6.9 – 6.12, 6.16 – 6.23, and 6.27.

·         Status: Phase Two (2009 – 2010) underway, involving thirteen teams across the country, 77 early intervention practitioners and at least 144 children, their families and whānau.

·         When can you expect to see something from the work?  There is a website for the project – www.inclusive.org.nz/asdev (part of the website is restricted to participants in the project). As resources are developed by the teams, they will be added to the website.