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.

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’

Che Tibby is justifiably angry in response, and there are some useful comments under his blog post, including one from Finn’s mother, Diane Standen, who notes (as she did to me in an email) that both the review and the Herald story omit any mention of Finn’s Asperger self-diagnosis:

Finn was quite open in identifying Aspergers as an issue with the CATT team. That was ignored then and since in the two CCHB reviews.

The only people with enough information to substantiate Finn’s. conclusions about Aspergers are his family and his partner. We are all confident that he made a realistic analysis.

The treatment Finn received would have been distressing for any individual in that situation. For a person with Aspergers their experience and reaction would have been far more acute.

When faced with removal from his home he was articulate about his extreme fears and refused to go into an unfamiliar environment. This had been an issue for Finn since childhood. It should have been respected. The advice from his family in the UK, phone and home support in his home for 48 hours until his sister Zoe could arrive to take over should have been considered. If felt insufficient, mental health support could have been available in the home for 48 hours. That path of action was not taken and Finn’s suicide was the consequence.

So there are two issues here: the awful incompetence shown on behalf of Capital Coast Health Board and others once a course of action had been set; and the fateful unwillingness to accept Asperger Syndrome as a complicating factor in that action. It is, sadly, not unknown for psychological services in New Zealand to fail to understand autism spectrum conditions: in this case, the results were disastrous.

Meanwhile, Diane’s website Aspergers Syndrome Stories is up and running in Britain, and has its first story, a tale of success out of misery whose depiction of school strikes a chord with our family experience. There’s a breakthrough moment:

Things started to go badly, kept getting ill then depression started to take grip. Couldn’t see a future, everything felt black. There just seemed to be pain everywhere and I was the cause of it.

Things came to a head when I went looking for food one night and found my mum crying fit to bust in the kitchen.

I’d never seen that before. I never realised how much I was hurting her. I didn’t know what to do about it, didn’t know how to help her or myself but something must have broken through a bit cause when two days later she started to talk to me about a job advertised in a local bike shop I didn’t close off.

I let her talk me into going along. I wouldn’t let her come in with me but she waited round the corner.

I wouldn’t say my interview was a great success, I mumbled, shuffled, probably looked at my feet a lot. John must have been desperate but he took me on trial. I owe him one and lots more.

I’m going to try and blog a lot more often here from now on, but for now, I’ll leave you with the concluding paragraph of David Cohen’s blog post for the Guardian website’s higher education section Around the world, parents of autistic children are fighting for their future. It’s this:

While parents of autistic children act as an educational infantry in this global educational struggle, we are usually the least equipped people in the world – in terms of time, resources and energy – to be waging any kind of battle at all.

Amen.

The following story is the work of Finn’s mother, Dianne Standen, for a forthcoming website. Dianne has also written her own story, which will be published both here on Humans in the next few days, and on Dianne’s new website.

Dianne says:

“Depression is regarded as a secondary mood disorder for many people who live with “high achieving” Asperger syndrome. The strain of managing Aspergers characteristics unsupported within society may prove overwhelming. It can lead to depression and thoughts of suicide.

“Sadly, many have not survived the experience — including Finn Higgins, who died February 11th 2008 at Mount Victoria, Wellington, New Zealand aged 26 years.

“Finn is one of many young Asperger people whose early death has devastated their families and friends. Finn’s death could have been avoided if he had he looked for more information and support from others. Sadly what probably proved fatal for Finn was the treatment he received from the Wellington mental health team managed by the Capital and Coast Health Board His story needs telling to prevent further deaths being caused through ignorance.”

FINN’S STORY

Although I now appreciate that Finn showed early indications of Asperger syndrome it was never a problem in our family and Finn considered he had a happy childhood with education at Waldorf schools in England and New Zealand. However he went on to develop feelings of isolation in adolescence that culminated in a depression when he was 15 years old.

He coped with help from his family but silently suppressed the issues. For the next ten years he was employed in a variety of technically challenging IT projects where his ability and application were well-respected. Alongside work he funded and completed a drum course and moved on to self-employment as a music teacher.

He had a dynamic, creative musical career and two warm, loving relationships. In both IT work and music Finn was a, self-taught, accomplished performer. Sadly, beyond the interaction that both activities brought, he felt unable to connect with people around him. The pain that arose from that was a large element of Finn’s depression which he tried to keep at bay by immersing himself in his passion, music.

Around 2006 he identified his long-term depression with Asperger syndrome characteristics and feeling unable to communicate, co-operate or network, despaired of a future in music. Critical of his own abilities and constantly striving for perfection in his drumming he turned away from the creative work which had sustained him and went into a major depression in early 2007. Following that he spent many months supporting his partner through a breakdown.

On February 8th 2008, against his will, Finn came to the attention of mental health services in Wellington, New Zealand where he had been living since 2006.

He was prescribed Citalopram, an anti-depressant. Though its manufacturers warn there can be an initial deterioration and advise monitoring this was not mentioned to Finn or his partner. Within two days of starting the drug Finn’s anxiety and depression deteriorated to the extent that Wellington mental health team (CATT) considered he should enter temporary care for his own safety.

Finn refused and was adamant he needed to stay in his home to feel secure. He gave reassurances about his safety and requested help from his family. Contacted in England, I suggested an alternative to removing him by force . It involved phone support in his home for 48 hours until his sister Zoe could arrive in Wellington from England to help him. This option was rejected without consideration.

The sectioning was started but not completed. The CATT team then left Finn and his partner alone. Finn, distressed by the proposed action, fled and attempted to drown himself in Wellington harbour. Heavily stung by jellyfish, he returned home to his partner and exhausted slept for 3 hours. Although his partner contacted the Crisis team and told them Finn was home and willing to talk to CATT no assistance came.

When he awoke to again face the prospect of enforced sectioning and removal by police he ran to Mt Victoria and committed suicide. I was not aware of Finn’s identification with Asperger syndrome until after his death but Finn was quite open with his assessment of the origins of his depression to the Wellington mental health team.

Whilst self-diagnosis can be contentious, Finn neither sought nor welcomed the involvement of mental health services. When a self-diagnosed Asperger person first presents as a crisis case then their analysis should be respected. His health notes acknowledge he had informed them of Aspergers syndrome by noting ‘self-diagnosis !‘ with an exclamation mark.

Although his notes go on to describe classic Asperger characteristics over the next few days there was no association, advice, assistance or treatment given in respect of Asperger syndrome. The Health team noted: – 1] Reluctance to have personal contact or interact with mental health team. 2] Limited eye contact and, obvious movement disorders. 3] Inability to project or consider future outcomes. 4] Refusal to contemplate respite care as he would be stressed by unfamiliar environments and people. 5] Rapid deterioration in his condition after starting Citalopram which was not monitored or noted. 6] Identification of his need to have his partner around to make him feel secure.

Relationship problems were assumed to be the cause of his depression and his behaviour towards his partner was wrongly identified (sadly a common , inaccurate assumption in Asperger relationships] as being manipulative and selfish. This undermined the support his partner was struggling to give and ultimately led to Finn feeling betrayed, another factor in his ending his life.

His last e-mail to me described the paranoia and mental confusion he experienced after starting Citalopram. Virtually every action of the Wellington mental health team intensified the pressures and despair that was crowding in on Finn. There seemed to be no knowledge of or sensitivity to Asperger issues.

Throughout his life I had supported Finn , often with considerable doubts, in his control of the issues that arose from undiagnosed Aspergers syndrome.

It gives me considerable personal pain that I was unable to help in his last request which was to stop the sectioning action which culminated in his death.

Reflecting on his life I know Finn was correct in identifying Asperger characteristics as the root of his depression. He described them as “blessing and a curse”. His partner described him as follows:

“He had different priorities to most people. Finding a post in life where he could be doing things of worth, such as making good music, or writing aesthetically ‘beautiful’ code was only second to keeping those he was loyal to, safe from harm. Knowledge, truth and perfection all came from code (ie writing computer programmes) and this would perhaps take priority over making dinner or having a shower, or even finding a job. His rationale would be that it would make him happy and he can’t do anything else if he’s not happy.

“He kept at least one difficult programming problem in his head, in case he was bored or upset and needed something calming to think about. Hence solving difficult logic problems made him relax and happy. If he became significantly mentally upset, it would affect him physically and he would shake or twitch uncontrollably.

“Finn valued being creative rather than cooperative. He was attentive to the details as well as the big picture . He wouldn’t want to make a judgement without getting all the perspectives you could possibly get on the topic. He has come across as confident and direct when it came to speaking about intellectual topics. He shied away from small talk and felt extremely awkward around it. In a way he felt safer in solitude as he found strangers to be irrational and therefore scary. This however gave him pain too, as he wanted to be able to connect with people easier. He just felt that when it came to social situations, he forced the group dynamic to freeze and there would always be a kind of awkward feeling between even the people he called friends for so many years.

“There were several examples of times when he had brought up topics that alienated the people around him, and he continued on – unable to recognise that he had lost the people he was talking to. He has never understood why it happens or how to change it, which is why he felt pain about never being able to be in a musical group/close social situations where you need to feel comfortable .

“Finn was overall unhappy with being stuck with a mind for logic, when he wanted a mind for creativity. In his logic world, he felt so far away from feeling human. He was a beautiful, intelligent, selfish, gentle, warm, indulgent, honest, entertaining, overly enthusiastic, amazing human being.”

FINN’S PERSONAL ACCOUNT OF ASPERGERS

An email written a few weeks before his death:

Hi,

I just read your post over at Humans about the issues you’ve been having with schooling . That set off a whole load of bells in my head, as I went through a whole load of chaos with school as a teenager. I was virtually absent from formal education from just before I turned thirteen until well after I turned eighteen.

There was never any medical involvement, but it’s definitely hard to read any accounts of living with AS without feeling a lot of overlap with the experiences I had with school and my early years of working. In terms of qualifications I have virtually nothing: I passed a GCSE in maths when I was 14, but basically all attempts at getting tutors involved and running formal home education ended quite badly.

That’s not to say I didn’t learn – but anything I did learn needed to be interesting to me and applicable to my own projects. I never went to university, although I do have a 1yr diploma from a music school that would qualify for entry in the UK with some fast talking.

If I’m going anywhere with this it’s to say that even the virtually complete rejection of formal education that I managed doesn’t need to be the end of the world. I had to deal with some serious anxiety and a few years of relatively crappy jobs when I started working, but I’m now 26 and have managed to work my way into a situation where I can go after jobs I care about and enjoy, and where I can apply myself and my skills to do things that have value to me.

I’m also comfortable enough socially that I have a wonderful partner who I love dearly, and who can put up with my occasional odd turns very sweetly and effectively. I wouldn’t claim that life is perfect or that I’d not have preferred things to have gone differently, but it’s all survivable and doesn’t have to go bad places.

My experience has been that generally life eases up on people with intellectual/practical skills and social difficulties as an adult Particularly if they’re good with computers or play the drums, two areas where being socially inept are practically badges of merit.

Anyway, let’s just say that being an exception isn’t all bad. It was no fun at the time for either myself or my mother, but I think I’ve come away from the experience with a degree of ability to guide my own learning that many people never get from years at school and university, and it’s actually become very valuable when it comes to being employed (and self-employed). It’s certainly left some scars, but they’re survivable ones.

I don’t know if any of that is helpful to read, but you seem to be doing all the right things in terms of being a caring parent from my perspective. I’ve got a huge amount of respect for you in the way you’ve taken your experiences and turned them into positive things like the Humans site.

All the best,
Finn

Israel is a behaviourist who fits electrodes to the arms, legs and torsos of resistant autistic children — misbehaviour earns a painful electric shock. Typically, the Nine reporter was too witless to do enough research (and we’re talking Googling the guy’s name, for goodness sake) to discover that Israel’s practice isn’t “new” at all.

As Mother Jones reported this week in a story headed Why Can’t Massachusetts Shut Matthew Israel Down? , he has been shocking autistic, and more recently Asperger, children for at least 17 years.

In the same issue of the magazine he gave an occasionally disturbing interview to Jennifer Gonnerman.

Autism Diva had an extensive post on Israel earlier this year, and an Australian blogger with a child on the autistic spectrum responds to the Nine report.

Last year the Boston Globe covered a report by New York City education officials who visited Israel’s “school”:

The report, based in part on an inspection last month of the Judge Rotenberg Educational Center in Canton, portrayed a school in which most staff lack training to handle the students and seem more focused on punishing bad behavior than encouraging good acts.

The investigators said some forms of discipline, such as a device that delivers shocks at timed intervals, appear to violate federal safety regulations, and students live in an atmosphere of “pervasive fears and anxieties.” ….

There have been increasing allegations of abuse at the Rotenberg Center in recent months.

They include several assertions that students have been badly burned by the shock devices, known as graduated electronic decelerators. The Massachusetts Disabled Persons Protection Commission has received 22 allegations of abuse at the school since January, including 12 that involve injuries. Rotenberg officials have steadfastly denied the charges, but commission officials say that at least two have been substantiated.

The full report is here. Remarkably, the centre is taxpayer-funded.

The use of electric shocks as an “aversive” factor dates back to the 1960s, when one of the “fathers” of ABA therapy Ole Ivar Lovass (like Israel, a disciple of B.F. Skinner) used electrodes in therapy for autistic children. The practice was reported in a 1965 Life magazine article, Screams, Slaps & Love: A surprising, shocking treatment helps far-gone mental cripples.

It plays no part in the modern ABA therapy practiced in New Zealand.

And in case you wondering how strong these shocks are, here’s a video: