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.

 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.

One Monday in mid-June of 1996 I took the train from Milan to Vicenza and found my way to the street address printed on the call-up card I had received just a few days earlier. A little surprised to discover that it was an ordinary looking residence, not the office or hospital building I expected, I rang the bell. A tall fellow in his mid-forties opened the door, looked at me for a few moments and declared, with perfect deadpan delivery:

“You must be Franz Kafka.”

And thus began my year of forced employment in the mental health sector.

I look back on it with fondness now, but the beginnings were difficult. Being suddenly drafted into such work – in the time-honoured and very deliberate fashion that the Italian army had of finding a placement for conscientious objectors at the last minute and with no forewarning, let alone training – was a little traumatic. Also, initially I had nowhere to stay but the house itself: I was the first objector in the history of that particular placement who came from out of town, and there was no other accommodation. The residents – half a dozen adult males, mostly schizophrenic – had but a vague concept of personal boundaries or working schedules, and since there were no nurses on duty at night they figured that waking me up to attend to their needs would be okay. I wish I could tell you that I took this entirely in my stride.

There is nothing quite so unsettling as a mind that cannot be read, because it works differently. Isn’t that where the stigma of madness comes from? But then you realise that for the mad person every other person on the planet is a source of ambiguity and confusion, and you find yourself unable to fathom just how unsettling and distressing that must feel, and the loneliness that it must bring. Coming to that realisation enabled me to get a grip on myself and a sense of just who it was who actually needed help; at the same time, having managed to persuade my superiors to find me a bed in a nearby office building made the working conditions a little saner, as it were. But I still didn’t know what my job was. Formally I was a generic adjunct to the nurses on duty, with no specific tasks – which is just as well I suppose, seeing as I had no training. I spent time socialising with the guys, played cards with them quite a bit, helped one with his gardening, another with his job-seeking and his English, but it was hard to shake the feeling that I wasn’t the only one who actually benefited from the arrangement.

The inspiration for a more meaningful way to contribute came by way of food. At the house we got our meals delivered from the hospital kitchen, and it ranged from the acceptable to the barely edible, but for dinner – by which time I was mostly off duty – I had to rely on the mess-tins left earlier that day by the door of my office-cum-bedroom. These would sometimes contain actual foodstuffs, in the form of cold pasta or slices of roast beef with salad, but just as often it would be a cold lump of sauerkraut, or several hundred mushy peas, and went straight into the bin. At 2.5 Euro per day (no, it isn’t a typo, just the pay of regular soldiers) I couldn’t really afford to dine out, and I had no cooking facilities, so I had to smuggle leftovers from the house, if there were any. It was grim.

Except for Wednesdays, that is. Wednesdays were a whole different story.

My friend Marco and I had applied for the status of conscientious objectors on the same day, and received our call-up papers on the same week, eighteen months later, a matter of days before we would have had to have been declared free of any obligation. We were both placed out of town, which was rare and unfortunate enough, but at least we were in the same region, and the council of the small town where he worked had granted him use of a ludicrously large house. So I tweaked my timetable in order to finish early on Wednesday and we got to spend the evening together, which brightened up my week a whole lot. We decided (it was his idea, I think) that on each one of those nights we’d treat ourselves to a sumptuous meal. To be precise, we worked our way through a book of recipes by Manuel Vázquez Montalbán, the author of the Pepe Carvalho novels. I still have it.

And thus some time in the winter came the idea of incorporating cooking into my work at the house. The hospital food was awful but the ingredients were fresh, so would they mind sending those to us instead? And if we wanted to depart from the set menu, we could dip into our modest fund for social activities.

Now if you’ve never cooked with schizophrenics, it’s an interesting experience, and I’m sure it has well-documented therapeutic value when organised by people who know what they are doing. We just gave it a crack, basically, and it seemed to work. There was no compulsion to participate, nor an excessively rigid schedule. The only rule was that we had to eat what we prepared, even if somebody (I’m looking at you, Paolo) had dumped half a bag of salt into the pot for the pasta. For some of the residents, who had expectations of being able to move out and live independently in the short term, there was practical value; for others it was an activity to be enjoyed if they felt up to it, and that reinforced the learning to take care of oneself that the more professional therapists were trying to foster. Plus we really did have quite a lot of fun, which has to be an end in and of itself.

In what is possibly the longest preamble in the history of this very preambley blog: that’s how I came to learn to make pizza, from one of the nurses. It’s reasonably uncommon for Italians to cook it at home, since it can be purchased so cheaply at a bakery or pizzeria, but we couldn’t really afford it at the house and besides it was a very good group activity: it took time, everybody could be given a job, it was physical, and didn’t require too much finesse. Also, while the preparation had some structure and drudgery to it, there was room to be creative with the toppings. It quickly became our favourite recipe.

***

This time last year I made the obvious point that cooking can be a way of transferring ancestral knowledge, of making somebody partake of your culture. My mother puts it more succinctly when she says that ‘food is love’, a maxim whose value has become clearer to me since becoming a parent, and discovering that cooking with the children can be an important part of the family conversation. But a new and altogether less predictable turn of events has recently put this idea into much sharper focus.

The year has been dominated for us by the discovery that our daughter is autistic. That constellation of behaviours of hers that seemed puzzling, difficult or upsetting, as well as those that suggested she may have special abilities and an uncommonly sharp mind, have been given a name, and a fraught one at that. We are fortunate to have been exposed, through friends and advocates and our son’s school, to other kids on the spectrum and their families, and that knowledge has taken some of the edge off the otherwise frightening label. Besides her being wonderful and a very smart cookie, there are lots of positives in the care that Lucia gets and can be expected to receive, giving us every hope that she will grow to be happy in who she is, and equipped to make her own way in the world.

But for the moment there remains that challenge of connecting with a mind that is different, the struggle to learn to speak the same language and to understand the world as she sees it, which can be a cause of mutual distress, for her and for us; and conversely, the joy in finding a way to get through, a space where we can be ourselves with each other, and talk, if not quite in ordinary words, and share the same experiences.

There is her territory, of music and words learned by rote, obeying her rules – the few songs that can be played or sung or danced to, the few books that she will allow us to read to her, the cartoons that she can bear to watch – and then there is the world of interactive play, of drawing or mucking about with water and containers, or the trips to the playground, all with their own carefully negotiated boundaries. But for me personally (her mother has more success with a broader range of things) there is nothing that I find more rewarding than cooking pizza with Lucia. It’s at those times that I feel that she’s stepping into my world, as opposed to the other way around, and that she is at her most receptive to what I have to say and show her. It’s the attentiveness that most kids will freely give, but that with her needs to be won, and is all the more precious.

So here’s what we do.

For the base: 500g (four cups) high grade flour, eight tablespoons of extra virgin olive oil, two teaspoons of salt, one teaspoon of sugar, 25g of fresh baker’s yeast, 250ml (1 cup) of lukewarm water.

The quantities have been refined over several years, so I have every confidence that if you follow them to the letter, you will have success. The first thing to do is to mix the yeast and sugar in the lukewarm water, and let it sit for a while. It’s at this time that Lucia will ask for a wee bit of yeast to taste on the side, and remark that ‘sugar is sweet’. Ten minutes or so later, when it’s had time to start fizzing, she will put her ear to it and delight at the sound. In the meantime you mix the flour and the salt in a bowl (‘salt is savoury’), add the oil, and add the yeast when it’s nice and lively.

Mixing the very liquid mess thus created is one of Lucia’s favourite parts, although she seems quite ginger in the picture. Once the dough has become dry enough to be handled, place it on a chopping board or other suitable surface and knead it, incorporating more flower if it’s still too sticky. But remember, you want to err on the side of soft and moist rather than dry and stodgy. This phase is the key to the whole preparation and should take you not less than ten minutes. Technique-wise, you want to use your palms as much as possible. Allow us to demonstrate.

Once this is done, you put the dough back in the bowl, cover with a cloth and let it rest in a dark place for an hour or until doubled in size. Lucia is going to insist that you check often. What you’re aiming for is to go from this

to this

Then you return the dough to the kneading surface and give it a good bash. Seriously, just pound it for half a minute or so, you want to get all the air out. Place it back in the bowl, cover with the cloth and leave in a cool dark place for another hour. While you wait, you can start working on your toppings.

Mix together in a bowl 300g of boiled peeled tomatoes (tinned is fine) a tablespoon of oregano, a pinch of salt, a tablespoon of extra virgin olive oil. Slice or grate 250 grams of mozzarella and that’s your basic margherita topping ready to go. You’ll add to it as you see fit.

Once the dough has had time to rise again, it ought to be very elastic and easy to work into a disc or rectangle, depending on the size of your tray or dish. My preference is for a very thin base and I generally extract three standard rectangular oven trays from one dough, but if you’re not practised you can initially aim for two. Alternatively, the same base will give you one tray of focaccia (the procedure for that and some alternative toppings are here). Whatever you make, it needs to cook at the highest temperature that your oven will allow, preferably in no longer than fifteen minutes or it will start to burn at the edges before it’s had time to cook in the middle. That really depends on how good your oven is. Naturally, the cooking surface needs to be greased with olive oil, and the oven needs to be pre-heated (sorry, George).

That’s all there is to it, it’s nothing complicated although it requires a little application and some free time. Having to pay attention to and be explicitly aware of the learning opportunities that Lucia gets, I’d have to say there’s plenty that we can fit into that one activity: some manual skills, a sense of time and causation (she’s learning to watch the pizza cook through the glass door of the oven) and how ingredients are combined to form something quite different, the taste of each individual ingredient and how to attend to a complex procedure in which she is asked to verbalise each of the steps. But mostly what we get out of it is the time spent together, a time in which we are both happy.

Oh, and the pizza isn’t bad either.

Giovanni Tiso

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. 

Danish Thorkil Sonne has built up a successful company, Specialisterne, which employs people with autism in IT and product testing. He is coming to Sydney for the APAC09 conference in August but, unfortunately, contractual obligations prevent him from coming to New Zealand at this time. This article was published in the Independent.
http://www.independent.co.uk/life-style/gadgets-and-tech/features/better-faster-and-no-office-politics-the-company-with-the-autistic-specialists-1693057.html

Better, faster…and no office politics: the company with the autistic specialists 

A pioneering company in Denmark is giving people with autism the chance to apply their skills to jobs from IT to product testing. The result is a huge success that’s about to be rolled out across Europe. Founder Thorkil Sonne tells Michael Booth how his workforce’s superhuman recall and unflinching focus could teach the rest of us a thing or two

Sunday, 31 May 2009

Anders Birch

‘We know we all have that twist’: Thomas Jacobsen, 27, says that working at Specialisterne has helped him learn how to deal with social situations

• More pictures

Thorkil Sonne and his wife already had two sons when their third, Lars, arrived in 1997, so they had plenty of experience of the behavioural quirks of growing youngsters. But as Lars entered kindergarten aged two-and-a-half, the couple began to notice a more troubling change. Lars wouldn’t play with the other children, preferring to sit alone for hours on end. He began to talk less and less, until he was virtually unable to engage in any kind of dialogue at all. Something was clearly very wrong.

“We were patient,” says Sonne. “Our older boys had taught us that each child has their pace at which they climb the ladder, but Lars seemed to be stuck on a step.” The Sonnes are Danes and, fortunately, the Danish education system is good at diagnosing childhood developmental problems. Unfortunately in Lars’s case, the diagnosis was childhood autism.

“It was scary. The first phase was denial: ‘I’ve known my child for three years, you’ve only met him for two months. Don’t come and tell me he has an incurable, life-long disability!’ Then you have a bad conscience; you remember the situations where you’ve tried to use traditional means of raising kids and they didn’t work. But it didn’t take long, reading the literature, to realise it was describing Lars to the letter and, after time, we realised that Lars was still our happy, caring boy; we just had to get to learn about his world.”

Most parents, upon learning their child has a condition like this, will read up on it, learn about the treatments, therapies and consequences and start planning for the future. Sonne went somewhat further. He became involved with his local autistic society, ending up as vice-chairman of a housing facility for people with Asperger’s syndrome, a type of autism that affects social imagination, interaction and communication. Through the housing association, he got to know an 18-year-old Asperger’s sufferer who was especially gifted with computers. “He had retired on a state pension,” says Sonne. “But I thought that was so unfair as he had valuable IT skills that I could see would be useful for software- testing, support monitoring, programming and so on.”

So, in 2004, Sonne left his job of 15 years at the Danish communications company TDC, remortgaged his house, and founded a company, Specialisterne (The Specialists), to find employment for adults with autism and Asperger’s as software and systems testers. The 18-year-old Sonne had met through the housing association was his first employee.

Five years on, Specialisterne employs 60 people, has a turnover of almost £2m, and works with Microsoft (it tested Windows XP Media Center) and CSC, among other major international companies, helping them to check information systems, databases and other highly demanding, often repetitive, number-crunching tasks. Specialisterne has won numerous business and industry awards, and now has two offices in Denmark. If current plans pan out, a new branch will open in Glasgow later this year. It is a shining model of how to turn a highly skilled yet misunderstood and underexploited element of the population – around one per cent have a diagnosis of autism, but other related “invisible disabilities”, such as ADHD (attention-deficit/hyperactivity disorder) for instance, may account for as much as 3.5 per cent of the population – into productive and integrated members of the workforce.

I am sitting with Sonne, a quietly spoken, rather studious man in his late forties, in his well-ordered office in a hi-tech industrial park on the outskirts of Copenhagen. As we talk about his son’s condition, he plucks a piece of paper from a filing cabinet. It’s a drawing his son made following a family holiday in southern Europe. I peer at the curious pyramidal temple of squares and numbers, trying to make sense of it. “It’s Europe!” I realise after a few moments. “But what are the numbers?” Sonne produces a photocopy of the schematic contents page from his European road atlas, the atlas they used on the journey south. His son had reproduced it entirely from memory. “I’ve tried to find a single mistake, but I can’t,” Sonne says, still amazed by his son’s memory.

It’s a powerful illustration of the incredible, verging on superhuman, attention to detail, recall and unflinching ‘ focus many autistic people have, whether expressed in architectural terms (as in Stephen Wiltshire’s work – he can draw a landscape after seeing it once); linguistic (autistic author Daniel Tammet is said to have learnt Icelandic in a week); or, as is the case with many of Sonne’s employees, numerical.

“There are so many different types of phones and services to be tested,” Sonne explains. “And the work is very repetitive but requires full attention all the time. Most companies use students or outsource to India or wherever. The first couple of tests they’ll do will be fine, but by the sixth, their attention wanes and it will always be the last test that’s the most important.” Aspergerians, on the other hand, relish the repetition, their focus doesn’t waver and their numerical skills are superlative. “My staff are motivated all the time. Our fault rate was 0.5 per cent, compared with five per cent from other testers. That’s an improvement by a factor of 10, which is why we can charge market rates. This is not cheap labour and it’s not occupational therapy. We simply do a better job.”

From the start, Sonne was clear that the company would operate under market conditions, and turn a profit, which made it virtually impossible to apply for government or EU support (“They just want people who will spend their money”). But, oblivious to the economic downturn, Specialisterne continues to pick up new clients largely by word of mouth. Organisations in more than 50 countries have approached Sonne to explore the idea of starting similar projects, with Norway and Switzerland likely to follow soon.

“I knew that the autistic people I met had dreams and ambitions, personalities and motivation,” he continues. “The trick was to create an environment that supported them. If you think of a high wire, suspended between two buildings, you aren’t going to take a chance and walk across it, even with a net. But if the wire was just a metre off the ground, you might try. It’s the same with our company. We created stable ground for autistic people to walk on and I see them develop self confidence and open up to new things as a result.”

Leading UK software-testing consultant Stephen Allott of ElectroMind has been acting as an unpaid adviser to Specialisterne as the company prepares to enter the UK market where, currently, only about six per cent of people with autism are in full-time employment. He is very clear on the advantages of using them: “Simply, they are better, faster and do higher-quality work than the people we can currently get from the labour market in the UK or India,” he says. “One of their guys can read a technical document the size of a book and spot inconsistencies between something on page three and page 37, which is incredibly useful. I already have clients in the UK who are interested in what they have to offer. The only thing we need to be careful about is their working environment. I know lots of companies with noisy, chaotic, open-plan offices, where the work is like fire-fighting most of the time, and people from Specialisterne wouldn’t be able to work there. That said, the environment they need is the kind of environment we should all be working in anyway.”

Remarkably, about 70 per cent of Specialisterne’s employees are stationed in client premises. I asked Sonne how easy it is for them to fit in with other working environments. “We create virtual Specialisterne environments in our clients’ offices. Everyone who will be in contact with our consultants is briefed about the conditions they require. They have to be nice to our people, avoid stressing them. In Denmark, we use a lot of irony and sarcasm, but people with autism can’t decode that. We make sure that the clients know how important it is to be direct, to outline tasks precisely and to stick to routines, particularly if any queries arise.”

“That’s how you avoid an ‘I only fly with Qantas’ freak-out?” I blurt. “Yes,” says Sonne. “We’ve never had a ‘freak-out’. In fact, saying what you mean, meaning what you say, being nice, avoiding stress are all good things in general for companies to take on board. Many have said to us that having one of our consultants has softened the atmosphere.”

It must actually be a relief to work with colleagues for whom office politics, backbiting and bitchiness are anathema. “Yes, they are a happy and loyal group, no one ever talks badly about anyone else. It’s nice to work with people who are honest, without filters. In fact I am working on a new management technique based on our experience with working conditions that are more open and direct.”

This doesn’t mean there aren’t misunderstandings from time to time. “One of our consultants was working in an office where they introduced a free fruit basket. He went straight up and took a whole bunch of bananas back to his desk. Someone had to explain that it was expected to take perhaps one or two pieces of fruit a day, and then he got it.”

It also doesn’t mean that Specialisterne’s workforce – 90 per cent of whom are male – are somehow robotic and unfeeling. “Oh no, in fact we have two employees who met at the company and are now engaged. Many socialise at the weekends and go out in Copenhagen together.”

Sonne introduced me to one of his colleagues, Thomas Jacobsen, 27. Jacobsen’s autism wasn’t diagnosed until he was in his twenties and, meeting him, you can understand why. There is a slight social awkwardness (though probably little more than you would experience with anyone confronted by an inquisitive journalist), and nothing to alert you to the fact he has endured lengthy periods of depression in his life.

“I wouldn’t say it was a relief, but it was nice to have a name for it, for my problem,” he told me of his diagnosis. “Actually, I don’t call it a problem, I call it a twist. Before, I felt I was different because I wasn’t very social, I preferred being on my own and had lots of special interests: earthquakes, tsunamis, geography, GNPs…” GNPs? “Yes, you know, the gross national product of different countries. Since I started work here, I have learnt to cope better with social interaction,

I haven’t had a depression in two-and-a-half years. I am getting more involved in bringing new ideas to the company and am part of shaping the Specialisterne Foundation [responsible for rolling out the concept to other countries]. You do have to have the right environment for people with Asperger’s to function – there needs to be an acceptance that I am special, that I might not work regular hours, that I might have down periods – but if you have that in place, we can do any job.”

Most Specialisterne employees tend to work 20- to 25-hour weeks, but Jacobsen has brought his hours up to 35. “You really blossom here. I see it with so many Aspergerians who join the company and get proper training. I have a lot of friends at the company now, and we socialise and go out together in town. We know we all have that twist.”

I begin to wonder about all those other, less number-oriented skills that about 30 per cent of higher-achieving Asperger’s sufferers display (to the extent that I rather wince to use the word “sufferer”). With a little lateral thinking, where else might fulfilling, productive roles be found for them in society? “Well, I would be very confident to know there were autistic people running air-traffic control towers,” says Sonne. “In any company, at least one to five per cent of all tasks would fit well with the skills of people with autism. This could apply to recognition patterns in the medical industry, to accounting, to banks? Of course, some experts have identified autistic traits in people such as Mozart, Da Vinci, Newton, Einstein. If they were alive today, perhaps they would be recognised as having Asperger’s, and look at what they achieved. Unfortunately, there is such an emphasis on being a team player and social skills in the workplace that there is still this resistance. But why do we all have to be like that? There should be room for other kinds of behaviour.

“My company is a showcase, but my end game is to get one million specialist people into meaningful work by providing a management model for large corporations to become attractive to people with special needs, so they know that they will be understood and supported. You know, in the UK you spend £12bn a year on the half-a-million Brits with autism. Why not get them earning that for the economy instead?”

Sonne’s hopes for his son must have changed radically from that first diagnosis, nine years ago. “Well, he can work here, but only if he wants to. He’s approaching some interesting times now as a teenager, but he is the nicest, most gentle and caring child you could imagine. It’s a pity to think he might be bullied in society because of his way of being.”

……….
And for another positive story – here is one from Canada

Mar 30th, 2009 | By Reesh Lyon | Category: Featured Article, Front Page Layout, Student Features

Asperger Syndrome is a mild form of autism that affects one in 300 people, but what is it and what is it like to live with? REESH LYON put these questions and more to a local Asperger and found insights into living, working and dealing with the syndrome.

ALAN GEORGE (pictured)  struggled for years to work out why everybody else seemed so different from himself.

He says people often assumed he was “stupid or perverse”, when in fact it had never made sense for him to do what everybody else did.

After dealings with mental health services got him nowhere, Alan, 52, started researching his symptoms and figured he might have Asperger Syndrome.

Typified by social awkwardness and behaviour that might seem odd to others, Asperger Syndrome is a form of autism. But there are significant differences - in particular, some people on the Asperger spectrum don’t exhibit learning difficulties and are highly intelligent. This characteristic is certainly evident in Alan’s conversation.

Diagnosed two years ago by a private clinical psychologist, he says the diagnosis itself gives him an understanding of what he can do and who he can relate to as he copes with what he calls an “invisible disability”.

Before the diagnosis Alan was “exceedingly isolated” as he didn’t know how to relate to others. He spent most of his time at home, had a long beard and long hair, and didn’t wash often.

“It wasn’t armpit smell, I suspect it was book dust,” he says, referring to his obsession with collecting books.

Pre-diagnosis he used to climb over piles of books to get to bed, and then have to kick books out of the bed once he got there. Before he could wash, he would have to throw books out of the bath tub.

Close friend Peter Stjernfelt, who has been helping Alan get to grips with the small things in life, observes that the book collection is now an “organised chaos”, with banana boxes full of books piled everywhere rather than piles of books: “He’s making things work for himself… there are no longer books in the sink.”

The diagnosis – for which Alan paid $1400 from his own pocket – allowed him to be treated accordingly and he now benefits from anti-depressants and anti-anxiety drugs.

He says his social skills started to improve soon after he got a job to pay his clinical psychologist’s bill.

Working as a dishwasher at a local restaurant, he found other employees would ask him how he was doing. This helped him learn to be more social, as he realised other people were interested in him and his progress with Asperger Syndrome.

He likens his social learning curve to a snowball rolling down a hill: The more he socialised, the easier it got. This was a positive step for someone who used to be so anxious he would rarely leave the house

“You get more and more comfortable with people,” says Alan.

In contrast to his previous hermit-like existence, he now socialises at pub quiz nights (pictured), walks dogs for his neighbours, and enjoys get-togethers with other adults with autistic tendencies.

A member of Autism Wellington, Alan attends its adult support group once a month in Johnsonville. He says it is much easier for him and others in the group to relate to people on the autistic spectrum.

The meetings give members a feeling of safety, as they are not “under pressure to be social in a regular type of way”, says Alan. “We accept each other.”

But he points out that within the group, some sub-groups and individuals are harder to deal with than others.

Knowing his diagnosis, and taking his medications, means Alan can live much more socially. He says while he is still progressing, people feel more comfortable with him now than they did previously.

Alan was first prescribed Prozac in 2002 and he soon found that his obsessive-compulsive tendencies began to diminish. He cites being able to leave the house without having to worry about leaving things behind, as he knew he could always go back and get them, “except the keys”.

This is in stark contrast to the countless times his ex-wife had to remind him “keys, puffer, purse” every time they left the house.

The couple met in the 1980s and Alan recalls they were married for “about five years” although she assures him it was “much longer than that”. At first they found that his condition was matched by her bi-polar disorder but eventually they divorced, and now remain good friends.

Born in Levin in June 1956, in his teens Alan attended Horowhenua College – a school he “thoroughly hated” except for history and English classes.

He says back then psychological disabilities were regarded as a personal or moral failure and people like him were seen as psychiatrically unwell. Autism was deemed a learning disability and those with the condition were therefore “retarded”.

Jen Birch, author of Congratulations!  It’s Asperger Syndrome, was also diagnosed with the syndrome as an adult. She says: “Asperger individuals being assumed to be ‘mentally retarded’ is a fairly common reaction from other, ‘normal’ people.”

Even brilliant people with Asperger Syndrome or autism can get this reaction, she says.

“This can still happen. Fortunately, there is now somewhat more societal awareness of autism spectrum disorders, but ordinary people who are not familiar with the characteristics of these disorders are still quite likely to feel that Asperger individuals are strange, weird, mentally retarded or learning disabled.”

Although the concept of Asperger Syndrome was originally developed by Austrian paediatrician Hans Asperger in the 1940s, it was not until the work of Lorna Wing in the ’80s that it began to get widespread attention.  But even then, the syndrome was normally attributed only to children and adolescents, with little emphasis on adults with autism.

For a long time, Alan was treated in the mental health and psychiatric system, but he believes that along with a lack of time and staff, psychiatric authorities were reluctant to diagnose patients.

He says a fundamental flaw was that staff were focused “not on self-help, but them helping you”, which often simply meant prescribing medication.

People with Asperger Syndrome were often given jobs of little or no responsibility, and in many respects he didn’t mind that. He says one of his favourite jobs was working on a poultry farm soon after leaving school.

While people like Alan can learn to live more social lives, he says it is “still near-on impossible to find meaningful work”.

Many people with the syndrome have a good memory, are patient and diligent in their work. Mechanical jobs that require memory, repetitive action and focus on detail are ideal, Alan says.

 But job interviews can prove to be a major hurdle.

Alan finds it hard to relate his skills to prospective employers and feels that he and others with autistic tendencies are wasted because job interviews are “socially mediated, not by facts”.

“We don’t even get close to the jobs. If you don’t have social skills and experience, you don’t get in the door.”

This is another area to which Jen Birch can relate: “Unfortunately, what Alan says about getting jobs and even getting interviews is more or less true for many Asperger individuals.”  

She too had many workplace difficulties during her adult life, until her own diagnosis at the age of 43.   The diagnosis helped her get into the workforce as she could apply for supported employment services – agencies which help people with disabilities get good jobs.

This, she says, is preferable to “sheltered workshops or any other demeaning sort of work for people with disabilities”.

Currently on the invalid’s benefit, Alan gives back to the autistic community by doing volunteer work for Autism Wellington. He helps five-to-nine year olds learn social skills – work he finds both enjoyable and rewarding.

“Their social skills and my social skills are pretty much equivalent.”

Although Alan is in his early 50s he can occasionally slip into behaviour of someone in their mid-teens – “and the next minute start acting like a six-year-old”, he says.

For example, he can be immediately enthusiastic about something small and it can overwhelm him. He cites once standing in the middle of a quiet library laughing hysterically about something minor.

He has a sharp sense of humour and, although his jokes sometimes fall flat, there are occasional moments of comic brilliance. The jokes he tells are often the result of his ability to make unusual connections between things – another quirk he puts down to Asperger Syndrome.

While many other adults with the syndrome live with family and are dependent on them, Alan lives by himself in the Wellington suburb of Brooklyn. He is learning to cook proper meals with the help of his friend Peter, who taught him skills such as shaving that seem natural to most people.

Whereas Alan’s diet used to be strictly potatoes three times a day (he does have an Irish heritage), he is now likely to eat a more wholesome dinner such as pork and rice with cream sauce – followed by watching one of his two favourite TV shows: Spongebob Squarepants or Fox News.

Peter, who holds a psychology degree, believes having friends to support Alan is very important. He notes that children on the Asperger spectrum have much more support than adults and speculates this is because “kids are cute, adults are not”.

Having toured North America twice, Alan doesn’t rule out travelling again as it helps him get perspective on life back home.

“[Travel] gave me a sense that social behaviour is different in different places,” he says. “You got the feeling that because you were from outside the area, people could accept you were different.”

Still collecting and trading books, Alan would love to run his own bookstore one day, although he doesn’t have a long-term plan and lives day to day.

One thing he is keen to pursue is tertiary education: He is looking into university history courses. As someone who comes across like a walking encyclopaedia, Alan may well find he feels at home steeped in historical information and analysis.

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 

29 January 2009 

Allan Peachey MP

Member of Parliament for Tamaki

Chair

Education and Science Select Committee

Parliament Buildings

Dear Mr Peachey

EDUCATION (NATIONAL STANDARDS) AMENDMENT ACT 2008 

I am writing on behalf of the board of Autism New Zealand Inc to express concerns about the Education (National Standards) Amendment Act 2008 which was passed under urgency in December. We had hoped to have the opportunity to make a submission to the select committee but were denied this opportunity because the Bill was passed under urgency through all its stages in two days.

This Act has serious implications for students with autism spectrum conditions and their families. But we do not think this has been taken into consideration by Parliament in passing this Act. In this letter we set out our concerns and ask some questions about the legislation.

There are two particular aspects that concern us for their potential negative effects on our children and families.

Part 1:  Increased fines for parents who do not ensure their children attend school, and extending the powers of prosecution beyond the local school board. 

Many students with autism have very negative school experiences. This could be due to bullying, the school not understanding their learning needs, sensory overload caused by the school environment, or a combination of these. Many students become reluctant to attend school to the extent of becoming school refusers or even school phobic. Others have been subject to ‘kiwi suspensions’ whereby they and their families are made to feel so unwelcome at the school that they find it easier to stop attending, although official procedures might not have been followed.

Whatever the cause, many students of legal school attendance age do not attend school. Many parents sympathise with their children as they see the stress the formal school environment causes.  But these parents are now liable for a $3000 fine on the second offence of not enforcing their child’s attendance. 

Will there be counter measures put into place to make school a more welcoming and appropriate environment for students with autism, and their families?

Part 2: Literacy and numeracy standards 

We have three questions about this section:

1. If all children are to be tested against national standards in New Zealand what provisions will there be for those with different learning styles, and for those whose strengths are not in literacy and numeracy?

2. We would like to know what extra support will be provided for children with special educational needs, including autism, in mainstream settings? All children with special educational needs (not just those with autism) are likely to need extra support to sit these tests and schools may be unprepared to enrol them as they will potentially drag their league tables down. Most children with autism and other special needs in

3. How will the testing regime impact on those in special schools, satellite classes and units? Will they also have the same tests and reporting requirements?

We are also concerned that this legislation is signalling that New Zealand will follow the No Child Left Behind policy of the Bush administration of the United States.

Temple Grandin, PhD, an adult with autism, has criticised the No Child Left Behind policy of standardised testing of literacy and numeracy for its negative effects on the teaching and learning of children with autism. Most autistic children have special learning needs, and many have strengths in areas beyond literacy and numeracy, while they may struggle with the narrow range of abilities being tested. But because the tests are publicly notified and the teachers must use them, there is little time for the personalised learning these children require. Some children in the

NCLB has recently been evaluated by the independent No Child Left Behind Commission. (Beyond NCLP: fulfilling the promise for our nation’s children, 2007 www.nclbcommission.org).

Their report provides valuable information for those of us interested in education of children with autism and special needs. NCLB came into force in 2002 with the admirable intentions of closing achievement gaps and having high expectations for all students. The Commission’s report approved the aims of the legislation but found it is not achieving its goals.

Why? Because, after intense research, they have concluded that what makes a difference are effective teachers (such as those who can teach and engage with a diversity of students), principals who provide strong community leadership, and schools that foster learning communities. They also found that those children with the greatest educational needs tended to get the least effective or most inexperienced teachers.  We in New Zealand already know all this and it has provided the basis of our teaching and learning policies for years. NCLB has now been shown to have done little to lower the numbers of high school drop outs and has even lowered achievement in some groups. One recent report details the unexpected consequences of threats of non-achievement on students, schools and parents, with manipulation of scores, inaccurate classification of students, and reduced flexibility in the curriculum. (Fetler, L, ‘Unexpected testing practices affecting English language learners and students with disabilities under No Child Left Behind’, 2008,  http://pareonline.net/getvn.asp?v=13&n=6) 

This is why we are concerned if the intention of the Education Amendment Act is to adopt an American system that has been shown to be deeply flawed.

I have attached two short papers from the Commission on No Child Left Behind (The Facts: ensuring students with disabilities achieve academic success and Teacher and Principal Recommendations: effective teachers for all students, effective principals for all communities www.nclbcommission.org) 

New Zealand Autism Spectrum Disorder Guideline

We would like to remind members of parliament and the committee of the extensive work done on the development of The New Zealand Autism Spectrum Disorder Guideline. It assessed the evidence about what works for children with ASD in educational settings and has found that the most suitable education setting ‘will be one:

• That provides adequate structure and gives the child or young person opportunities for contact with typically developing peers
• Where staff are well trained and have a positive attitude, expertise, understanding and a willingness to work in a team with the family
• That has the ability to be flexible in meting the child’s needs over time (Recommendation 3.4.3)’.  (NZ ASD Guideline, 2008, page 129).

It recommended that:

‘tests and other cognitive assessments should be administered  by a psychologist with experience and training in ASD (Recommendation 3.2.4.1) The setting needs to be chosen with particular care and extreme care is required when interpreting test scores, particularly with young children.’ (Pg 116)

We would be very happy to come and talk to you and/or your committee about the educational needs of students with autism spectrum conditions.

Yours sincerely

Hilary Stace

Board Member

Autism New Zealand Inc

This week I received the following letter back from Mr Peachey. 

‘10 February 2009

Dear Hilary

Thank you for your recent letter relating to the Education National Standards Amendment Act 2008.

 I have not yet had time to study your letter in detail but will do that in the next few days and bring to the attention of the Minister for Education concerns that I have in relation to how our autistic children are treated in schools.

I have raised with the Honourable Chris Carter Deputy Chairperson of the Education Select Committee the thought that the committee might do some work on the schooling for autistic children.

I can not guarantee that this will happen but it is something I am quite keen to do.

 Kind regards

Allan Peachey

Member of Parliament

Tamaki’

As a clinician working with a range of general patients, but with a research and clinical interest in developmental disabilities such as AS, I’ve been thinking recently about the ethics of when to diagnose AS, particularly when someone is in my care for another psychological problem.

People with AS who have discovered the diagnosis themselves will often have enthusiasm for the concept of AS, reasonable insight and good psychological awareness. But what about people who have little insight and/or little psychological awareness and interest? Should they be introduced to this concept without asking, when they are presenting for care for something else? How would this affect their relationship (and mine!) with their existing psychiatrist and/or psychologist, who have often seen the patient for many years and provided the best care they can? Can I be sure that the person would not do better believing they have Bipolar Disorder or some other diagnosis? Interestingly, those with the most obvious symptoms, even with relatives with ASDs, are least likely to bring up the idea of whether there is another diagnosis, due perhaps to the reduced insight in more severely affected people.

I’ve struggled with this idea for a while now. I had thought that surely everyone would rather know the truth about all their diagnoses, but I feel now there are some people who really would not. These include:

-Those who have no current psychological complaints, no interest in psychology and are happy with their lifestyle, even if they seem odd or their lifestyle seems restricted to others

-Those who do have psychological complaints but no interest in psychology, and who are currently dealt with adequately under other services and labels.

One group I am uncertain about, though, are those who appear to have AS, had a stressful upbringing or some other major life stresses, current psychological problems and some interest in psychology. They may attribute all their complaints to the environment. If I suggested there was another reason apart from the environment for their complaints, this may disrupt their whole world view, especially if they’ve been seeing a Freudian psychoanalyst!

An example might be Janet Frame. Her clinicians in England decided that her problems later in life: lack of social skills, depression etc. were “caused” by being in hospital. Perhaps, instead, the long hospital stay worsened her pre-existing symptoms, and her lack of social supports further worsened her symptoms. Most people would never act in the way she did, even if they were in hospital for years, buts its very likely she might have been more “normal” if she had never been in hospital. But perhaps she might have preferred to believe this, rather than believe she had a disability, especially as both ways would have allowed her to get appropriate help when she needed it. 

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.