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

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

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

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

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

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

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

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

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

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

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

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

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

Soon after that I was in the local supermarket when I saw the Member of Parliament, Allan Peachey who was the new chair of the Education and Science Select Committee – the committee that should have been given the job of examining the bill and hearing public submissions.  As happens in New Zealand, where politicians are seen as ordinary citizens, I introduced myself and expressed my concern about the impact of national standards on autistic students. He suggested that Autism NZ (I was then on the board) contact the select committee. Which I did, and the concerns were covered in an early post on this humans blog.  We visited them twice before my term on the board finished. Both the Ministry of Education and current Autism NZ CEO and staff have subsequently briefed the committee on progress.

However, in three years, nothing much has been resolved, and it seems schools are more or less deciding for themselves whether their autistic students are required to participate in National Standards. The National Standards regime itself remains very unpopular, divisive and largely resisted by schools. It is a pity the initial bill did not go through the select committee process as many of  the difficulties in implementation would have become obvious then (and maybe resolved). Meanwhile the US has largely abandoned the No Child Left Behind Policy on which our standards regime was largely based.

As the current session of parliament comes to an end, the Education and Science Committee of  the New Zealand House of Representatives has issued a report on the briefings it has had over the last three years from Autism NZ over the vexed question of the National Government’s new national standards regime and its impact on and appropriateness for students with autism. That such a report has been published is a victory for citizenship democracy. But this won’t be the last time we need to stand up for people with autism in the formal political processes.

Here is the link to the full report and below is the text.

http://www.parliament.nz/en-NZ/PB/SC/Documents/Reports/5/8/b/49DBSCH_SCR5332_1-Briefing-from-Autism-New-Zealand-Briefing-from-the.htm

BRIEFING FROM AUTISM NEW ZEALAND

 Recommendation

The Education and Science Select Committee received briefings from Autism New Zealand, from the Ministry of Education on the educational needs of students with autism spectrum disorders, and from the Ministry of Education on the arrangements for assessing students with autism against the National Standards. We recommend that the House take note of our report.

Introduction

We received a letter from Autism New Zealand Incorporated, dated 29 January 2009, which expressed concern that they had not been able to make a submission on the Education (National Standards) Amendment Act 2008 as it had been passed under urgency. The letter also set out their view of the implications of this legislation for students with autism spectrum conditions and their families. We initiated a briefing from Autism New Zealand on these issues (and invited the Ministry of Education to attend); subsequently, we initiated briefings from the Ministry of Education on the educational needs of students with autism spectrum disorders, and on the arrangements for assessing students with autism against the National Standards.

Hearings of Evidence

29 April 2009

We heard from Autism New Zealand that their main concerns about the Education (National Standards) Amendment Act 2008 were that it provided for higher fines for parents who do not ensure their children attend school and that it introduced formal testing against literacy and numeracy standards for all primary-age pupils. When a student with an autism spectrum disorder does not attend school it is much more likely to be because of a negative school environment than a lack of effort on the parents’ part.

Students with ASD are likely to have different learning styles, and educational strengths that do not line up with formal definitions of literacy and numeracy. They noted the negative effect on the teaching and learning of ASD students of the No Child Left Behind policy in the United States.

Autism New Zealand also noted the publication by the Ministry of Health (co-authored by the Ministry of Education) in March 2008 of the Guideline for practitioners; recommends complementary, coordinated responses; raises awareness; and seeks to improve practice, knowledge, skills and confidence in services. They would like the Government to follow the guidelines when designing and implementing policy. Autism New Zealand had not been invited to contribute to consultation on the implementation of the National Standards; the Ministry of Education noted that the consultation had not yet started.

3 June 2009

We heard from the ministry about resources it has developed for the education of students with ASD. It noted that a majority of students with ASD could be classed as high-functioning and did very well in the school system; and many of the remainder qualified for support from the ongoing and reviewable resourcing schemes. The ministry’s response to the recommendations in the New Zealand Autism Spectrum Disorder Guideline  dealing with education has been to compile an Autism Spectrum Disorder Action Plan, which focuses on early recognition and intervention, and building a national network of expertise in dealing with ASD.

The ministry has been considering support for ASD students’ transitions between classes or schools, and is developing policy based on individual education plans. Awareness of ASD in the community has improved since the ministry released a DVD called In My Shoes.

We noted that the ministry’s consultation on the National Standards had now begun, and expressed a wish that the ministry not conclude the consultation without reference to the issues raised by Autism New Zealand and the views expressed in the “Education for learners with ASD” section of the New Zealand Autism Spectrum Disorder Guideline.

4 August 2010

We heard from the ministry that about one percent of the population is likely to fall somewhere on the autism spectrum. It has established a training programme for teachers, called “Tips for Autism”, and has introduced a post-graduate diploma in special education. There is an expectation that the national curriculum will be delivered to every child in the education system; the National Standards are used to measure achievement under the curriculum and to report the level of achievement against it.

For students on an individual education plan, progress towards the individual goals set out in the IEP will be reported, and the IEP is expected to include any part of the National Standards that are achievable by each student. The ministry believes that the way the National Standards are assessed should be tailored to the needs of every child, not only special needs children with IEPs.

10 November 2010

We heard from the ministry that the Government’s response to the review of special education had been released, and included further resources to support students with ASD, particularly those receiving ongoing and reviewable resourcing scheme funding. Further work will be done on itinerant teachers operating out of special schools to support the ORRS programme. The graduating teacher standards now include specific requirements concerning special education. The ministry confirmed the policy mentioned in the previous hearing on reporting to parents for students on IEPs, and the ministry’s new guidelines for IEPs was ready to be released to schools. The ministry noted that students receiving ORRS funding, students whose schools have placed them on IEPs, and students with ASD are separate, although overlapping, categories. Students whose progress will not be reported to parents against the National Standards are likely to be only those who are both on an IEP and receive ORRS funding because of high cognitive needs. Reporting against the National Standards to boards on all students will still be required.

23 March 2011

We heard that Autism New Zealand remains concerned about the level of awareness in schools of ASD and its interaction with the application of the National Standards. They are also concerned that many ASD students are not on IEPs, and that most ASD students do not attract ORRS funding, with the consequence that many who in their view are unlikely to ever reach the National Standards will be measured against them, and will have nothing but failure to be reported. A third area of concern is the model answers supplied for assessing student work against the National Standards. A related issue is students with a wide divergence of ability in different parts of the curriculum; students may, for example, excel in reading comprehension but be unable to reach the standard for writing. Autism New Zealand is also concerned that many ASD students, particularly at primary level, have difficulty enrolling at a school; we heard about one student who had been turned away by five schools. They did not believe that schools’ concerns about their National Standards performance was exacerbating this problem.

7 September 2011

We heard from Autism New Zealand that they have had further meetings with the ministry and have been developing resources and tools for use in schools, as has the ministry. An area of concern is that a significant number of teachers still do not have the skills necessary to work with special needs children, particularly ASD children, in the context of the National Standards. Most of their concerns previously expressed to the committee remain.

We heard from the ministry that the implementation of the National Standards is a three-year programme with at least another year to run. The response to the review of special education has prompted further professional development, some for all teachers about the National Standards, and some about special education as needed. The ministry did not believe that the requirement for schools to have targets for the National Standards in their charters would discourage schools from enrolling children with special needs. The ministry considered that the information gathered from reporting against the National Standards would help bring potential problems to their notice, which the ministry would then act on.

Conclusion

We would like the incoming Education and Science Committee to note the progress that has been made on these issues, and to continue to monitor the way the National Standards are applied to students with autism spectrum disorders, particularly in the light of the recommendations from the review of special education.

Appendix

Committee procedure

We received briefings from Autism New Zealand on 29 April 2009, and 23 March and 7 September 2011, and briefings from the Ministry of Education on 3 June 2009, 4 August and 10 November 2010, and 7 September 2011. We considered the briefings on 28 September and 5 October 2011.

Committee members

Allan Peachey (Chairperson)

Kelvin Davis

Catherine Delahunty

Jo Goodhew

Colin King

Sue Moroney

Hon Heather Roy

David Shearer

Louise Upston

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

Anyway, here’s my five things :-

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

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

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

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

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

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

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

However, the process dragged on. Significant social media interest ensured that Arie was not forgotten, and a more experienced defence lawyer took on the case pro bono as the police continued to refuse diversion (which would have ended the case) at a series of hearings. At the beginning of July he was once again remanded. On 10 July the TV1 Sunday current affairs programme ran an item called ‘A tale of two light bulbs’, in which Arie and his friend Michael were allowed to tell their own story. (As a parent of another 25 year old man with autism I just loved its authentic portrayal of the condition, such as Arie’s temporary distraction by a train while they were filming, and his intense honesty.) The programme also revealed that the building owners (an elderly couple) were not aware of the ‘burglary’ until Sunday contacted them a couple of weeks earlier; they confirmed it was a building derelict even before the first September earthquake, the fittings had little value, and their main concern for anyone entering the site was safety. In the programme Arie was shown visiting and apologising to them.

The obvious solution is for a kind electrician to give Arie a job or apprenticeship opportunity to utilise his extensive interest and knowledge of electrical systems. This is just the sort of initiative that is needed to rebuild the city of Christchurch.

Arie’s ‘case’ has raised interest and understanding about autism and aspergers, and has seen, possibly for the first time, a young autistic man talk about his own life on prime time television without any of that hero/tragedy overlay stuff that is the usual default position of ‘disability’ stories. The ‘case’ came into the public consciousness and stayed there for four months largely because of the power of social media. The intense public and media interest have seen extensive discussion: on dedicated facebook pages such as the one for ‘Justice for Arie Smith-Voorkamp’ (on which Arie and Michael have both commented); advocacy websites including those for Aspergers, and gay rights; as well as the mainstream blogosphere such as Russell Brown’s Public Address;  and commentators Brian Edwards and Chris Trotter. Many websites contain comments from other people with autism and family members on their own, often similar, experiences.

Even though there have been the inevitable negative feedback and responses, and the police and the justice system seem currently stuck in finding resolution, my belief is that Arie’s ‘case’ is one of those seminal and symbolic events which significantly shifts our way of seeing and thinking about difference and inclusion. In the past the only direction for someone like Arie would be incarceration in an institution, or forensic unit, likely with chemical straitjacket as ‘treatment’ for mental illness. However, in 2011 he is a resilient individual with a face and a voice, and expectations of an ordinary life. Without wanting to sound too sanctimonious, it’s an opportunity for the rest of us to reflect on our own individual and collective attitudes to autism, ‘disability’ and humanity.

Here are some links

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10709601

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10711260

http://publicaddress.net/system/topic/2931/ about Arie (First thread from 7 March which had 41,000 views)

http://publicaddress.net/hardnews/angry-and-thrilled-about-arie/   (Second thread from 11 July)

http://strangeringodzone.blogspot.com/2011/07/two-lightbulbs-aspie-and-police.html

http://www.asnz.exofire.net/index.php?news&nid=21

http://bowalleyroad.blogspot.com/2011/03/whose-media.html

http://gaynz.com/blog/bipolarbear/archives/104

Here is the Sunday programme from 10 July

http://tvnz.co.nz/sunday/s2011-e19-video-4292608 Sunday programme

For those from outside NZ who may not be able to access this here are some notes posted on facebook

NOTES FROM TV ONE’S SUNDAY PROGRAMME ABOUT ARIE SMITH (7:30pm 10 July 2011)
Arie, 25 years of age, partner Michael (both appeared on the Documentary segment)

“Arie Smith is a name under close Police scrutiny” (Commentator)
“I’m too scared to go outside now” (Arie – referring to the beating’s effect)
“2 light bulbs from a building condemned” (Commentator)
“feast on Christchurch’s Carnage” (Laws – the building was wrecked prior to all earthquakes)
“I ain’t no wild animal” (Arie – referring to Laws calling him “feral”)
“Arie was charged and paraded by Police” (Commentator – referring to how he was paraded before soldiers for abuse)
“kept on suicide watch” (Commentator – referring to Arie’s remand for a week)
“didn’t wear a bike helmet” (Commentator – extracting information about Arie’s only previous offence)
“I love trains” (Arie – atopping his thoughts while seeing a train pass before him as he was being interviewed)
“an old PDL box-type light switch” (Commentator – referring to the third item that took Arie’s interest that he was dismantling at the time after getting two light bulbs)
“passed (the site) over and over again”, “it drives me bonkers” (Arie – referring to how he became obsessed about the fixtures”
“draws complicated electrical diagrams” (Commentator – noting Arie’s obvious intelligence)
“I’m pretty smart” (Arie – assessing his own intelligence)
“foster homes, neglect, abandonment” (Commentator – noting Arie’s harsh past)
“I was diagnosed at 13” (Arie)
“targetted by bullies and left school at 15” (Commentator)
“did community courses” (Commentator)
“self-taught on electrical” (Commentator)
“fixes light switches from old building sites” (Commentator)
“ignored modern switches” (Commentator)
“saw light bulbs” (and thought) “these will look good on show, on the mantelpiece” (Arie – explaining what he was doing in taking the abandoned items)
“I lit up like a bulb” when I saw them (Arie – referring to what he was thinking at the time)
“they can deny it, but I saw it was” (an assault) (Michael – referring to Arie being beaten)
“common assault, they treated him like a common animal” (Michael – referring to what he thought happened”
“I repeatedly told him not to go in – the building’s unsafe” (Michael – stating why he stayed outside at first)
“went in after 10 minutes to rescue him” (Michael – stating his purpose for being in the building”
“michael did nothing wrong” (Arie – referring to his partner’s role)
“a female cop came in first” (Arie)
“two army guys put handcuff’s on michael” (Arie)
“Arie was hysterical, there were three on him, two holding him down and one” tightening the handcuffs. Arie was saying ‘they are too tight already’” (Michael)
“elbowed him in the face, I heard it, like ‘clunk’” (Michael)
“he was hysterical and cuffed at the time and his face was on the ground” (Michael)
“punch at the back of the head” (Arie)
“Blacked out a couple of times” (Arie)
“Police say any involvement of army is spurious” (Commentator – quoting Police news release)
“common animal”, “physical assault” (Michael)
“if Police had taken a calmer approach, they would have stopped the hysteria” (Michael)
“taking the piss out of him ‘you a bit funny are you?’” (Michael – giving example of Police making matters worse because of Aries stutter etc.)
“coz of the punishment what I got I’m even too scared to go out” (Arie – referring to the life he now leads as a result of the beating)
“I don’t ever want to go to jail. It was terrifying” (Arie – suggesting why he was not up to make a complaint against Police)
“Andrew and Irene Matsis have been the buildings owners for over 40 years” (Commentator – introducing a nice oldish couple who owned the pre-earthquake derelict structure)
“I realise I put Police in jeopardy” (Arie – referring to the harm of his actions in going into the dangerous building”
“nothing of value” (Matsis – referring to the items Arie was interested in, took)
“telling them off” (Matsis – referring to correct punishment due because the building was dangerous to enter)
“would not have pressed charges – of course not” (Matsis – referring to correct punishment due)
“he is welcome to them and you can tell the Police” (Matsis – referring to the two light bulbs)
“serious nature” (Commentator – referring to Police press release of how they considered the charges)
“unblemished record” (Commentator – referring to Arie’s past)
“4 months, 6 remands” (Commentator – referring to ordeal for Arie)
“long backlog of cases” (Lawyer – referring to legal situation in earthquake damaged Christchurch at present)
“a forensic enquiry that will be expensive and a waste of resources” (Lawyer – referring to what path the Police have chosen)
“I want to apologise for taking two light bulbs” (Arie – to the Matsis couple)
“they (Police) should have rung us up” (Matsis – not understanding why this was all being done in their name without any say so)
“a bright future” (Commentator – referring to Arie’s future in electrical work etc.)
“hopes to be an electrician” (Commentator)
“Police have visited the Matsis’ twice” (Commentator – referring to the sinister way Police have leant on the Matsis couple to retract any concern they had for how Arie had been treated)
“Police have told us that Sunday are under criminal investigation as a result of our story” (Commentator – ending with the most sinister part of all, that Police are trying to muzzle/prosecute Sunday for running the story)

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

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

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

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

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

How wrong I was.

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

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

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

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

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

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

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

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

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

We shall note for a start that they were both diagnosed at three years of age. Although when we say that Lucia was diagnosed, that isn’t quite correct: she was referred to the specialist services of our District Health Board after an informal assessment by a speech therapist contacted via her kindergarten. The DHB came back with a letter stating that she would be unlikely to be seen for a more formal diagnosis before nine to twelve months, while educational support at kindergarten wouldn’t be provided before six to nine months. And… that was it. We didn’t receive any psychological support or information or any other form of assistance, except in the form of a very small weekly disability allowance – but only after we saw a paediatrician privately. Nobody from the DHB had in fact even told us that the allowance was available.

Now compare this:

Our son Ambrose was admitted to the Accidents and Emergencies Department of Wellington Hospital last Saturday afternoon. Before the acute stage of the illness had even been resolved, the diabetes nurse and the doctors had begun to explain to us the nature of the disease and how it would impact on his life and ours. It was a patient instruction delivered with the utmost sensitivity and care by a well-coordinated team of professionals with clearly defined roles. They all stressed that the ultimate aim was to allow us and later our son to manage his condition and grow to share as much as possible in the same experiences and lifestyle as his peers. (Think about that statement.) By the time Ambrose was discharged, three days after admission, we had seen two diabetes nurses, several doctors, a dietician and a social worker, and had been given a great deal of information not only on how to manage the disease on a day to day basis but also on how to access further publicly-funded support and services. (And, yes, the form to receive a separate disability allowance.) We remain in regular telephone contact with the child diabetes specialist and the diabetes nurse, know what kind of situations are likely to arise and whom to contact if we need information or help.

None of this was the case for Lucia. We were lucky to know advocates and people with autistic children and to have the means to tap into their knowledge. We were even more fortunate to be able to afford some of the help that we needed. But the fact that we could provide shouldn’t be allowed to cover for the fact that we were left to fend for ourselves, and that we (and Lucia) could really have used a great deal more help by a more caring and philosophically robust service.

Now you could opine that diabetes and autism are fundamentally different conditions that require fundamentally different types of intervention. But are they in fact so very different? A diabetic who is denied insulin might die. An autist who is denied specialist psychological and developmental support will fail to thrive. So long as the objective of a fair and equitable public health service is not simply to allow individuals to exist, but also to participate in society as equals, the two services should operate in broadly similar ways: which is to say, by seeking to empower families, schools and communities to care for and include the little boy with diabetes and the little girl with autism. Equally.

And if you still think that no, the two situations aren’t comparable, consider this kicker: one of the services offered to us as parents of a diabetic child by the DHB is a psychologist, in recognition of the impact of the disease on sufferers and their families. It happens to be the same doctor that we’ve been seeing, and who has helped us immeasurably, in the last two years with Lucia – but with her we’ve had to do it privately, since apparently nobody thought that the parents of an autistic child could use something like that.

Justine Fletcher, Giovanni Tiso

For my thesis I have tried to untangle the current policy process and hope to recommend a consistently better way of doing things that includes the lived experience of people with autism and their families. I’ve got a way to go yet but here is a summary of what I’ve found out.

New Zealand Autism Spectrum Disorder Guideline initiatives

Much of the current concern and awareness of ASD goes back to the death of a teenage autistic girl in 1997. Since then there have been large numbers of papers and reports, committees and research projects mainly from the Ministries of Education and Health. This work culminated in the publication in April 2008 of the New Zealand Autism Spectrum Disorder Guideline, with over 300 recommendations based on best practice knowledge from around the world. It was a world first in that it took a whole of government, whole of spectrum, whole of life approach to ASD (although the adult section was particularly light as least work had been done in that field).  The Labour-led government gave $17.5 million in 2007 for this work over 4 years. This has almost run out but hopefully some funding will be ongoing.

A contract was won by the New Zealand Guidelines Group to work on implementation. They set up a group of people including people with autism, parents and ASD professionals as their Implementation Advisory Group*. It is chaired by Matt Frost (who has written for humans). This group has its last meeting next week and an ongoing cross agency group will keep monitoring work programmes. (There is also an ongoing Living Guideline Group which is updating evidence and they first worked on ABA and are now examining medication.) 

In the last two years the NZGG’s IAG, and their sponsors in the Ministries of Health and Education, have been very busy. They started by sorted all the recommendations into five priority areas 

• Assessment and diagnosis
• Support to strengthen families
• Interventions
• Respite
• Coordination

Several initiatives have resulted. They recommended putting more funding into programmes that were already working well. An example is the training for parents of pre-schoolers with ASD. Autism NZ has been given more money to take their Earlybird course to parents in most of the North Island. Idea Services won the contract for their new ASD Plus parent education course in Northland and the South Island.  Tips is a school based programme that was boosted.

Respite was another urgent area and contracts have been given to groups in various parts of New Zealand, and work reviewing respite is ongoing.

A big need was support for families through the diagnostic pathway and a tender was announced earlier this year for ASD coordinators in the DHBs for people under 19. There was not enough money for all the DHBs to have one each so they were encouraged to work collaboratively. The successful tenderers have not yet been announced, and it is possible that some regions will miss out. There is also the issue of people over 19 to address, and currently there is no pathway for diagnosis in the public system. For children and young people there are still long waits up to a year in many regions for diagnosis and as most Needs Assessment and Service Coordination agencies only work with people with ASD plus intellectual impairment (ie not Aspergers) there needs to be a cognitive assessment as well to determine whether the child has intellectual impairment (which may take another 18 month wait). Education has its own diagnostic and support pathway and their assessment process means a child may or may not get help with a teacher aide in pre-school or school.

However, some good news is that resources about ASD have been developed for GPs, health professionals and others (called recognisers and referrers). These have been developed jointly by the Werry Centre, Altogether Autism and the NZGG, and there is now a website where they can be found (as well as a hologram of IAG chair and Aspie Matt Frost) www.asdguideline.com

Behaviour support is a big issue for some autism families and Idea Services recemtly won a contract for services in the Auckland region. A tender for services in the rest of New Zealand has closed and the successful group or groups will be announced in a couple of months.

Apart from all of this the Ministry of Education Special Education is developing a network of ‘go to’ ASD experts so there will be regional expertise available through their 14 Group Special Education offices. 

Overseeing all this is a senior officials groups with representation from several government departments as well as Health and Education, including Work and Income, Minstry of Social Development, CYFs and Justice.

Threats

However, while the ASD Guideline work is rolling out new and enhanced programmes, other parts of government are facing cuts and we need to be alert to these.

In education the cuts to community education and restrictions on entry to universities are very negative for people with autism as many have had bad experiences at school and need a pathway back into education such as through night classes. The Training Incentive Allowance which helped people on benefits access tertiary education has gone. There used to be funding for a cluster of schools to get together and employ an ASD specialist who would work across schools in the area and do such things as staff training (including all school staff). A very successful programme ran in the Wairarapa a couple of years ago and is now underway in the Upper Hutt area. However, funding for this was cut for new ventures in last year’s Budget.   The special education workers in the Ministry of Education are not considered front line and there have been several staff cuts including to pre-school autism advisors and people who liaised between families and schools. I have also heard of cuts to speech therapist positions. Other staff, already busy, will apparently also take on these jobs. This will probably mean that families have to tell their stories over and over to new staff.  My opinions on national standards can be found in earlier posts on humans. A review on Special Education has been underway over the last few months and they will report soon.

Welfare and employment are big issues in ASD. Getting the Child Disability Allowance (not means tested) has been almost automatic for any child with ASD under 16. It is now much harder and parents have to prove that ASD means significant extra costs. On turning 16 a young person with ASD could go on the Invalid’s Benefit even if they were still at school, and they wouldn’t need to keep proving they still had autism. The criteria are being tightened and many people with ASD on the IB are being put on the sickness benefit and work tested. Most people with ASD are willing and able to work but this may require significant support and employers and workplaces to understand about ASD, for example the sensory issues, the need for order, clear instructions and quiet spaces. But funding for employment support has been cut.

Changes to the Needs Assessment and Service Coordination system are likely with current work happening in the Ministry of Health looking at alternative systems such as the Local Area Coordination and Individualised Funding. These will be made public later this year.

However, there are organisations around New Zealand providing information and support. Autism NZ (www.autismnz.org.nz) is running a conference in Wellington in September which includes a stream run for and by adults on the spectrum. ANZ also have branches around new Zealand and some employ field workers and information staff. Altogether Autism (www.altogetherautism.org.nz) also provides information. The Ministries of Health and Education have ASD information about services on their websites. You can also get a free copy of the ASD Guideline or the English or te reo summary through the Ministry of Health and access regular ASD update newsletters.

There are also several facebook pages and websites relating to autism and Aspergers. The current estimate of one percent of the population on the autistic spectrum means many families, schools and communities will have autistic members.

(*Disclosure: I was part of the group which bid for that contract and am a member of the NZGG’s Implementation Advisory Group)

Sean has Asperger’s. Or is that Had Asperger’s? It is very hard for us to tell anymore. I hope this story will offer some hope for those parents who are willing to love their children unconditionally, nurture them unfailingly, and believe that we all have a place in this world.

Sean is our third child. He has an outspoken older sister – state competitor in track, homecoming queen; an introspective older brother – Eagle Scout, bass player in a band. We, his parents, are college graduates – self employed professionals. We are junkies of ‘positive mental attitude’ with our mantras being “there is no difference between the mind and the body” and “whether you think you can or think you cannot – you are right.” We have seen most of the big names in that industry: Chopra, Dyer, Canfield, Tracy and others. We were all of this before Sean was born, thank you God.

Sean had tendencies at an early age: he would not step on the cracks in the sidewalk, he would only wear sweatshirts with hoods and most of the time he had them up. He pumped (flapped) his fingers at most things he watched. He did everything in a routine. He hated bugs! And loud noises.

He had a very hard time with transitions – any transitions, places, people, clothes, food, everything. He had tantrums.

But he loved books, music and games – logic and spelling games on the computer at a very young age were his favorite. He could make his way through the steps of any game and could spell virtually anything. We discovered he could read when he was 3. When listening to music we would ask him “what note is this song?” He would go to the piano and without hesitation plunk the key that the song was in, also when he was 3.

When we discovered something called Asperger Syndrome we were terrified. Of course he had this! He had most of the signs & symptoms. What do we do?! Well, our beliefs and training told us to focus on the positive. Sean had so many positive qualities. Maybe he really didn’t have this Syndrome… then, yes, he really does.

We did not seek any medical advice. Not to diagnose, treat or even to ask questions. We sought out no help, no medication, no alternative care treatments, no parent groups, no books, not even any seminars or tapes. We went forward with these thoughts: Sean is our son and we love him just as he is. He has so many wonderful qualities and talents we are going to focus on them and deal with the rest keeping this in mind – Sean is our son and we love him.

We would be lying if we said everything went great. School was a challenge in the social aspect, which is classic. Sean had a great friend early in elementary school, but once they hit middle school his friend realized he could have just as much fun with kids who played sports and didn’t get so upset at seemingly small things. We confronted each issue as it came along doing the best we could to find a resolution he and we could be happy with, if even just for a moment. We had to be brutally honest with Sean at a young age. In third grade he was having break downs at school and the teacher called our home several times. Finally, we sat with him and said “Here’s the thing – we know the naughty kids make you mad, we know you don’t like milk, we know you know all the answers, we know you hate gym, and everything else but you have got to make it through the day without falling apart. You have to. Mrs. Smith’s job is to teach all the kids. You have to let her do her job. Your job is to do all the tasks she asks of you, the ones you like and the ones you don’t like. Our job is to love you and we do! We don’t want to say this, but you have to hold it in. You have to.” The teacher did not call again.

Over the years we have learned to help Sean deal with things one at a time and that seemed to help but we chaperoned most school trips just in case. We adjusted our working hours so dad could take the kids to school and mom could pick them up and one of us was always home. This reaped rewards beyond measure with our other children as well. As Sean matured he learned, with some help from us, to acknowledge when things started to bother him – even the kids at school learned that if he just had a second to decompress he could go on. That all seems like ancient history now. I suppose if we had written it all down we would have proof of how very difficult it was at times. The times we cried and broke down ourselves. But we didn’t keep track of the bad, only the good. Always, always, we focused on the positive – music, books, scouts. Family.

Tonight Sean will drive himself to church for Confirmation practice and after he and some friends will head to Subway to eat. So, it’s like this – does he or doesn’t he? If he was never diagnosed then maybe he never needed a cure. So we just don’t mention it. And everyday he still hears I love you.

Jamine & Brian Deal

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

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

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

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

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

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

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

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

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

Ben Wilson