Access by Various artists

I have been interested in autism for about 30 years thanks to my son Oscar. Children can lead you in interesting directions.

My cute little boy walked on his toes, flapped his hands, was not interested in playing with other children, liked to spin the wheels of his toy for hours, screamed inside the supermarket, and when he eventually started to talk referred to himself in the third person. He soon knew everything there was to know about aircraft and airlines.

I was lucky – in those days agencies worked together and even though he didn’t yet have the label of autism he had a great team of professionals who put him in the centre, at home and at playcentre. I was also lucky to have a supportive family and community.

When you have a child who is different your instincts are often to ask why, find out what is it you are dealing with and what can be done. With autism the first two raise too many unknowns and most parents I suspect just get on with getting on. Which for autism usually means a lot of advocating. For me it also meant researching until I got a PhD in 2011 on autism policy, in trying to understand why it all seems so hard to get right. I was lucky to get research funding from the Health Research Council.

I looked at the history of autism and of the disability rights movement and tested some public policy theories, and talked to a lot of people, family members, policy and support people and people on the spectrum.

I found that autism is so complex that it could be considered a ‘wicked’ problem (more about that later). But also that good outcomes for a person on the spectrum largely depend on love and luck, as suggested by my friend Matt Frost, which in practice means having the love of someone (often a mother) who will advocate for you and your needs forever if necessary, and the luck to find the right people and services when you need them. Love and luck depend on chance, so are not a good basis for public policy.

So what is autism?

Everyone probably has their own idea. Perhaps it is a person or people you know, a family member, or maybe you identify as a person on the spectrum. There is a huge variety in how autism presents and what it looks like. As the saying goes if you’ve met one person with autism, you have met one person with autism.

When I first got interested in the topic in the 1990s the concept of autism was dominated by the 1988 movie Rain Man. The character with autism played by Dustin Hoffman was loosely based on Kim Peek, an autistic savant, and was also influenced by Oliver Sacks’ writings. With the addition of a great deal of artistic license. So an autistic man was shuffly, lived in an institution, had savant abilities and frustrated his cool brother who was played in that movie by a young Tom Cruise. Rain Man dominated ‘what autism is’ for years.

Yet there were several other portrayals of autism in movies of the era including Peter Sellers’ Being There and a very youthful Leonardo di Caprio in What’s Eating Gilbert Grape ‒ although autism is not mentioned in either of those movies.

Autism can be a code for a type of behaviour that is different, sometimes scary or confusing. And the code and the label changes over time. And the label itself is contested. Which is all problematic for public policy.

When I first learned about autism in the 1990s I heard about the ‘triad of impairments’ which was the language of the time from the diagnostic bible the US Psychiatric Association’s Diagnostic and Statistical Manual (DSM). The triad involved problems – it was framed in negative clinical language ‒ with social interaction (mind blindness), communication (non or unusual use of language), and restricted interests and activities.

Not surprisingly, as these criteria were developed from the observations of clinical outsiders, there was no recognition of the sensory sensitivities of hearing, vision, touch, taste and smell which we now know are a critical aspects of autism. Clinicians saw tantrums rather than meltdowns caused by sensory overload (which can be manifested for example by the child putting their hands over their ears or in limited food preferences).

Today we know that these sensory sensitivities, and the so-called triad of impairments can also be positive. Many autistic people credit their particular autistic gifts for artistic, engineering, IT or other achievements. As autistic animal behaviourist and writer Temple Grandin has said, probably the major inventions in the world came from people with autism because the rest were too busy socialising.

Where has autism come from?

I suspect there have always been people with autism – in every culture. But with the rise of the science of psychology and psychiatry in the early 20^th century it was inevitable that autism would be studied and named. The ‘aloneness’ (autos ‒ Greek, autismus ‒ Latin, meaning self) of certain children fascinated many and the idea of autism was used about 100 years ago by a Swiss psychiatrist, Eugen Bleuler, to describe a type of schizophrenia. Ominously, he also advocated the sterilisation of people with schizophrenia. Soon the Nazi era would influence significant developments in autism.

Many of the academics and leading clinicians in Germany and Austria were Jewish and they started leaving Europe in the 1920s to escape growing anti- Semitism and discrimination. One of those who left was Austrian Leo Kanner.

Kanner was born in the 1890s in what is now part of Ukraine and studied at the University of Berlin. He immigrated to the US in the 1920s and eventually became the America's first specialist child psychiatrist. He was based at Johns Hopkins Hospital in Baltimore. But he did not work alone. As he became established in the US he encouraged and sponsored many of his Jewish colleagues to leave Europe and join him in his developing work on autism. One who did was Georg Frankl, who had been working as a diagnostician with Hans Asperger in Vienna in the 1930s before being employed by Kanner in 1937.

In 1943 Kanner published a significant paper ‘Autistic disturbances of affective contact’ about a group of children he had been studying. He described a condition which he called early infantile autism that could have been caused by poor parenting (meaning distant or cool parents). So Kanner was establishing a diagnostic culture for autism. He published an influential text book called Child Psychiatry which was republished several times over the decades.

Meanwhile in Vienna, a young Austrian paediatrician named Hans Asperger was working at the University Children’s Hospital in Vienna. The first killings by the Nazis started after a German father asked the state’s doctors to euthanise his disabled son. That was the beginning of the mass killings – starting with disabled children and extending to adults and then to other groups, including Jews.

I like to think that as a paediatrician working under the Nazi regime Asperger described the children he was working with as ‘little professors’ to save them. He also suggested autism was a spectrum and supported education for autistic children. This history is contested (and Wikipedia is currently very anti Asperger) but for details of this fascinating era I recommend Steve Silbermans’ recent book Neurotribes.

Asperger’s autism thesis of 1944 did not reach the English speaking world English for several decades until it was translated and championed by UK autism experts Lorna Wing and Uta Frith in the 1980s, after Asperger’s death. For a while Kanner's Autism described those with high and complex needs and Aspergers the so-called high-functioning end of the spectrum. But it appears that the two groups of children studied were very similar.

A few years ago journalists tracked down Kanner’s child no 1, Donald Triplett, and found he lived an independent life in his 70s, including driving himself to golf. His life provides a salutory lesson in not taking an initial diagnosis too negatively.

Meanwhile the blaming of parents for this strange condition persisted. Into the picture came another Jewish American, Bruno Bettleheim. He had been briefly imprisoned in a concentration camp in 1938, released in 1939 and went to the US where he became an apparently self-taught professor of Psychology at the University of Chicago. He was also an early proponent of pop psychology and his 1967 book The empty fortress remained influential for decades. He popularised the term ‘refrigerator mothers', those cold and emotionally detached parents who were the cause of their child’s autism, which he likened to being in a concentration camp but caused by maternal deprivation. In New Zealand this theory made it very difficult for the parents of the few children with diagnosed autism to set up support groups and fundraise.

Autism in New Zealand

In New Zealand in the 1950s and 1960s there were high levels of institutionalisation of disabled children, including those who today would be diagnosed with autism. Eugenics-based public policy had for decades advocated that disabled children should be locked away and families should forget about them. Hundreds of disabled children, young people and adults lived in institutions such as Kimberley near Levin.

But some mothers wanted a better life for their children. One was Marion Bruce who died earlier this year and who helped me a lot with my research. She recalls that her youngest son was ‘different’. In the 1960s she tried to find a local school to take him and community support, without success.

Retired British child psychiatrist Mildred Creak visited New Zealand at that time as she had Quaker relatives in Wanganui. Mildred Creak is another of the significant people in autism history – an age contemporary of Hans Asperger born around the turn of the century.

Creak diagnosed young Andrew Bruce and a few other New Zealand children using the specialised diagnostic tool she had developed. She encouraged Marion to get together with other parents for support and to find out more about this puzzling condition. So in 1967 Marion and her husband went to Adelaide in Australia for the first autism conference in the southern hemisphere. She gave me a copy of the proceedings. It was progressive for the time (remember this was the same year as Bettelheim’s book) and mainly considered the educational potential of autistic children.

A keynote speaker was a young child psychiatrist from London called Dr Michael Rutter, another Quaker. In his presentation he called ‘infantile autism’ a rare disorder occurring in about 3 or 4 children out of every 10,000, three or four times as frequent in boys as in girls with a tendency for autistic children to come from the middle class. The condition usually manifested by the age of two and a half.

Rutter critiqued the operant conditioning of behaviourist psychologist Skinner which was then being publicised by Lovaas and is the basis of today’s ABA therapy. He called on adults to provide role models. He cited Kanner’s classic text Child Psychiatry, but challenged Kanner in overlooking the educational potential of such children and his talk was about the principles upon which the education of autistic children should be based. That marked a significant change in direction.

Today, in his 80s, Dr Rutter is an influential and still practising child psychiatrist – and also an advisor to the Dunedin Longitudinal Study. He learned from Kanner, but his more positive approach to children with autism and their families has been influential.

Every country has its own autism history but the circle of international influencers is quite small and our history shows that New Zealanders were up with the latest theories.

However, at that time the only place which would provide any educational support for Marion’s son was Hohepa and he remains in their care today. Marion helped develop a parents’ autism support group in 1969, initially under the umbrella of the Intellectually Handicapped Children’s Assn (later the IHC). Thirty years later the organisation become Autism NZ. Marion joined the Wellington Hospital Board and managed to establish Puketiro as a diagnostic and respite centre. She told me about the relief that followed research showing autism was genetic and not caused by bad parenting, as that stigma had made life difficult for parents for many decades.

The Disability Rights movement

Meanwhile in New Zealand and worldwide the disability rights movement was gaining momentum

A few milestones in NZ:

1975 The Disabled Persons Community Welfare Act provided the first disability allowance, respite and carer support

1980s Rise of the self-advocacy People First movement

1989 Education Act legislated for the right of all children to go to their local school from 5-19 years

1993 Human rights Act included disability as grounds

1999 First Minster of Disability Issues soon followed by the establishment of the Office for Disability Issues

2001 The NZ Disability Strategy recognised the social model of disability – that people have impairments but society creates disability and can also address those disabling environments and policies

2006 The last psychopaedic institution, Kimberley, closed

2008 Ratification of the UN Convention on the Rights of Persons with Disabilities.

There were also some significant policy changes affecting autism.

In 1993, disability support went from the Department of Social Welfare to the Ministry of Health. People now sought support through a gatekeeping Needs Assessment and Support Coordination (NASC) system with narrow eligibility criteria of only intellectual, physical, hearing or vision impairment.

The 1994 DSM IV contained the diagnosis of Aspergers syndrome ‒ autism without intellectual disability ‒ for the first time, but it would be 20 more years until people with autism and without ID could access NASC.

In 1996 the new policy of Special Education 2000 brought in targeted ORS funding for only 1% of children and a small Special Education Grant for each school. There have been several major reviews since, which have all highlighted the lack of support for autistic students.

In 1997 a mother killed her autistic teenage daughter which resulted in two major inquiries, known as the Curry Report (internal to the Ministry of Health) and the official government response, the Werry Report. In the latter, significantly, Professor John Werry urged professionals to listen to mothers when they say their child is different, as they are usually right and need support.

Ten years of policy work on autism led to the 2008 NZ ASD Guideline, led by another autism champion, the late Joanna Curzon. For a few years there was a little bit of money for implementation but in 2016 most research in the Guideline is now 10 years out of date. For a fast moving field like autism that is significant. Last month some specific updates to recommendations were published.

So where are we today with autism?

We now have a new DSM 5^th edition which describes one large autistic spectrum. Although it is US-based, the DSM influences much of the autism research and literature and diagnostic tools in the English speaking world and is similar to the guidance given by the World Health Organisation’s International Classification of Disability.

Prevalence

Just as diagnostic data is fluid and contextual, so are the estimated numbers of people with autism. Thirty years ago it was considered a rare condition affecting perhaps 2-3 children in 10,000 people. Then Aspergers entered the DSM VI in 1994 and by the early 2000s it was 1 in 100. By 2012 the number had jumped in the US to 1 in 88 and by 2014 the US Centers for Disease Control and Prevention, the government agency responsible for such data, estimated that 1 in 68 children had an autism spectrum disorder.

This new estimate was based on data from 8-year-olds across the US, ranging from 1 in 175 children in Alabama to 1 in 45 children in New Jersey. Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities.

The data showed that ASD was almost five times more common among boys than girls: 1 in 42 boys versus 1 in 189 girls. White children were more likely to be identified as having ASD than black or Hispanic children. Levels of intellectual ability vary greatly among children with autism, with about half average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.

But why this dramatic growth in numbers over the years – was something causing an epidemic?

Earlier this year,  new autism statistics from the Center for Disease Control and Prevention suggested that autism is steady at the same 1 in 68 prevalence in schoolkids across the country as two years previously. This was the first time since 2002 that the agency released new autism numbers that did not reflect an upward trend.

Autism remains more commonly identified among white children as compared to non-white kids. And the condition is far more prevalent among boys.

What does all this indicate? I suspect it shows that diagnosis and services are more likely to go to white kids. Girls are probably underrepresented – perhaps the right diagnostic tools are not being used. And what about the adults?

But on the positive side, was can say that the whole scare debate of the last couple of decades about an autism epidemic has probably been due to increasing access to diagnosis and widening diagnostic criteria, rather than anything more sinister.

Today’s NZ data

We have little New Zealand data. Although the last census has a disability prevalence of 24% of people with a significant impairment lasting longer than 6 months, it does not have a specific category of autism and the Ministry of Education doesn’t use diagnosis labels.

However, the Ministry of Health’s NASC data from 2014, the first year autism in its own right became a criterion for NASC assessment, has recently been released. It shows 16% or 5077 people had autism as their primary disability (so a lot of people had been missing out on support). Many of those with ID, which was by far the largest group, also had ASD.

Figure 40: Age and sex of Clients with ASD

• The median age of clients with ASD is 12 years.
• ASD clients are predominantly male (81%).

• ASD clients are predominantly young (80% of ASD clients are aged under 20).

Carer support is by far the most common service usage.

So, a good start and we will be watching the trends from now on.

Ministry of Health Demographic Report on Clients Allocated the Ministry of Health’s Disability Support Services as at September 2014 (released June 2016)

Minds for Minds is a clinical research group based at the University of Auckland which is crowdsourcing autism data from New Zealanders. The latest Minds for Minds newsletter (Issue #5, May 2016) reveals some new data:

Some of the key points to come out of this analysis are listed below:

• We observe the well-reported male to female gender bias (4:1)

• The population distribution reflects New Zealand’s latest census

• Anxiety disorders, depression and epilepsy were highly prevalent amongst individuals with ASD and their families

• 48.5% reported at least one other co-occurring condition  The most common co-occurring condition in those under 7 is ADHD, then in decreasing frequency dyspraxia, followed by depression and anxiety

 The most common condition in those aged 8 to 17 was depression and anxiety, then in decreasing frequency ADHD, followed by dyspraxia

 The most common condition in those over the age of 18 was depression and anxiety, then in decreasing frequency gastrointestinal symptoms, followed by ADHD

• The number of co-occurring conditions increased with age

• 91.2% of individuals reported one or more condition among first-degree relatives

• The most common conditions occurring in relatives were ADHD, depression and anxiety, ASD

They are also doing genetic testing of volunteers and ‘observing just how varied and complex the genetics of ASD can be’… ‘involving several different regions of a person’s DNA including multiple chromosomes’.

Yet despite all this progress we still have people with autism institutionalised, sometimes in seclusion. One is Ashley Peacock, a victim of an abusive and uncaring system. Despite the best efforts of his parents over many years, and some prominent media coverage, he remains institutionalised under the mental health system.

And as for the numbers of people with autism locked up in our justice system – we have no idea.

Meanwhile, people with autism have an estimated life expectancy of about 20 years less than those without.

So what about autistic adults? It is an unresearched area. There is not even a straightforward diagnostic pathway for autistic adults in our public health system.

Competing autism agendas

Autism is not something that can be seen, touched or measured. There are different and often conflicting agendas. So how to make sense of it?

An attempt at sorting the competing agendas has been made by US academic Dana Lee Baker (2011). She writes about cause, cure, care and celebration.

Cause attracts the bulk of research money and status.

Although not evidence-based, seeking a cure for autism is big business – and some parents use dangerous interventions such as testosterone injections for their children, or dosing with bleach.

Care sees autism as a negative economic cost.

Celebration of autistic identity and neurodiversity is the preferred approach for self-advocates and some families.

I like to think that celebration of the diversity of humanity could also underpin an inclusive future which also values caring and nurturing.

Meanwhile, most weeks there is the latest theory about the causes of autism – with many confusing causation and correlation. But latest research indicates a complex interaction between genes and environment, a condition which is highly heritable, to do with brain connections and possibly gut microbiome. For me though, it is more important that everyone belongs in an inclusive community which is welcoming of diversity.

So drawing all these threads together it seems obvious to me that we are dealing with a ‘wicked’ policy problem. A ‘wicked’ problem is resistant to an easy solution with no one definition of the problem, is socially complex and risks unintended consequences with any interventions.

The only way forward is to be innovative, so we could start by giving policy power to people with autism and their families and allies. Perhaps we could let the self-advocacy movement find their own solutions for their own lives, deal with their own conflicts and create their own leaders?

How about the future?

Technology will continue to have a huge influence. Those apparently non-verbal autistic people, can now ‘talk’ through technology such as iPads and smart phones and can tell us a lot. Of course, they also need access to the technology and particularly the skilled teaching in how to use it. I urge people to presume competence in anyone with a diagnosis of autism, however impaired they appear, as they probably know and understand a lot more than the rest of us assume.

As well, we neurotypicals (those of us without autism) need to find more effective ways of talking and communication with people with autism – we should perhaps take care to be more literal and logical and use fewer metaphors and colloquialisms and keep instructions simple.

What I have observed is that there is often a lot of anxiety in people with autism and it is largely caused by not being able to predict the future. Just because something happened yesterday does not mean it will happen today. We need to be sensitive to that anxiety and explain carefully the full sequence of what will happen in daily activities and what needs to be organised to ensure it all goes smoothly.

I have noticed a great deal more awareness of autism in the last 20 years or so, which is not surprising if prevalence is 1 in 68. That means each school and community has people with autism and their families.

Employment is a big issue for many. We need patient and flexible employers who see strengths not weaknesses. Our welfare system is punitive and keeps many in poverty. So a Universal Basic Income could remove a lot of anxiety and stress and value the various way autistic people contribute to society.

I would like more integrated support systems around the person with autism.

I would like to see people with autism find their place in an inclusive society and not have to depend on having the love of a family and the luck to find good supports.

Parents are important. Parents can be the key to their children’s inclusion After all my research I realise firstly and forever I will be a parent of child with autism. As parents of children, young people and adults with autism we all probably accept that this job is for a life time. The future is always a worry.

So there are many threads in the autism story.

It is a Māori perspective on time and progress that we walk backwards into the present and future. So we acknowledge and bring the work and wisdom of those who have come before with us in our work and understanding of the present situation and in anticipating the future. 

Walking backwards into the present and into the future and seeing where we have been, and acknowledging those who went before, highlights the complexities of a fascinating condition that is hard to describe or pin down.

Personally, I hope there will still be people with autism in the future and I hope they are valued.

But there is never a last word on autism.

–––

(Edited from a presentation at Victoria University, 13 July)

The Wellington High Court is at the bottom of Molesworth Street, directly across from Parliament and the Beehive. Sometimes there are bored reporters and camera people waiting outside for some "infamous" person (or someone on their behalf) to emerge so they can report the verdict and reactions in time for the 6 o’clock news.

I have walked past the Court thousands of times but I have never been inside the sliding glass doors. Until now.

Inside the first set of glass doors is a noticeboard with a typed list of the cases on each day. There are nine court rooms in the Wellington High Court. Courtroom 1 is where most jury trials happen and a security check is required before entering that room. A couple of weeks ago you could walk into the building and visit any of the other court rooms unchecked. But last week the security post was shifted to just inside the second set of glass doors so it is now unavoidable for anyone visiting any courtroom.

It could be coincidence, but the shift might have been because there is a court case on currently about the incarceration of disabled people in our mental health system.

Perhaps someone thinks that those wanting to come and listen to proceedings, such as survivors of psychiatric treatment or historic abuse, may be dangerous? I have heard of a couple of people threatened with trespass for merely trying to come into the building. One angry person went back the next day and sorted it out with the security guard, but a woman tearfully told me she has been permanently trespassed, she says, just for wanting to watch the proceedings.

The case being heard currently in Courtroom 6 downstairs is the one we are interested in. To get there you walk past rows of photos of former and current judges and some historic interpretation of the court site. I remember it – years ago ‒ as the site of the Tivoli theatre where I once cried in a movie called Freckles about a man with one hand. There was a cake shop there later, called the Artcraft, which had big jars of homemade biscuits. In the 1980s there was a building on the site which housed the Dictionary of New Zealand Biography where I worked for a while. Professor Bill Oliver’s pipe smoke wafted along the corridor and the fierce Miria Simpson taught us to spell and pronounce iwi names correctly.

Downstairs in the High Court building you eventually find the correct court room, pull open the metal (not wooden) door of the courtroom and find a few rows of public seats. The room is basically an enclosed box, like a large classroom. No natural light, no decoration, no gesture towards biculturalism. Here the arcane and privileged world of the law is in action. No one is obviously wearing a wig but they wear these intricately pleated black gowns with little pockets on the back which are a remnant from the era when clients inserted coins, like in slot machines, to get some more work out of the lawyer.

The judge in this case is a young woman. Confusingly, the human rights lawyer has the same surname. Other lawyers represent the defendant organisations. They all have numerous volumes of paper in front of them as well as computer screens.

It is a slow process as they all find a particular cited reference on screen and paper. One day about 10 people spent 45 minutes trying to get a video to work. It was an interview with one of the anonymous complainants so pretty important. Then they gave up and went to lunch.

They seem to have a lot of breaks – understandable for the intensity of the topic and the airless fluorescent-lit room. Much of it is very slow and waffly. When the judge signals a break she stands up and everyone has to stand until she has left the room. Then all the lawyers stop being adversarial and become part of the same legal tribe again. When she comes back a registrar announces the entrance of the "Queen’s judge" and everyone has to stand again.

So what is the case and why is it so significant to disability rights? This is its name: “X” & ORS v ATTORNEY GENERAL & ORS (ORS here means ‘others’ and nothing to do with special education ORS), and it is about multiple claims relating to the treatment of patients in psychiatric care.

This case is not about Ashley Peacock, although he gets regularly mentioned. This is about some disabled adults in psychiatric care, and human rights lawyer Tony Ellis is taking the case on their behalf. The claimants are three men with intellectual disability/autism and assorted "co-morbidities" (other health conditions possibly caused by the stress of their situation?) referred to as patients X, Y and Z. They were made special patients under the 1992 Mental Health Act after supposed violence (meltdowns?). The Act has a particular legal diagnosis called "mental disorder" which seems a catch-all for assorted negative behaviour and heath conditions.

One man has been in care for 17 years, one for 14 and the other was released after 13 years. They are suing Waitemata and Capital Coast DHB and assorted other government agencies and each claimant is seeking $100,000 plus $25,000 for each year they were incarcerated.

The court is hearing stories of seclusion, restraints, violence and abuse including fractures, lack of access to proper facilities and the denial of personal possessions. The units they live in have powerful or pretty Māori names. It is the face of modern institutionalisation, but all those giving evidence seem to have the best of intentions for the people in their care.

There is a lot of discussion about the Mental Health Act and the Intellectual Disability Compulsory Care & Rehabilitation Act, which is a more recent innovation for people with intellectual disability who have been charged with offenses but deemed not suitable for the normal legal system.

Either way, people appear to be able to be locked up indefinitely. Exit processes seem mysterious. Sometimes the UN Convention on the Rights of Persons with Disabilities gets a mention. Sometimes they don’t get the details or the language right, which is frustrating for those of us watching for whom this work and policy is very familiar.

Ashley is a patient under the Mental Health Act who has committed no offence, so much in the evidence presented in this court is relevant to him too. This morning, for example, there were discussions about informed consent for medication, and what is meant by seclusion. Auckland human rights group Justice Action has been collecting evidence for many years and persuaded Tony Ellis to take on the case. Whatever happens they are developing useful case law.

So if you are in Wellington and have some spare time, go and watch our legal system in action. It would be good to show the Judge that we care about these complex issues and those members of our disability community who can’t advocate for themselves. It’s scheduled to continue for another two weeks or so. Check the website for details as they don’t sit every day. It is nice and warm there. But don’t argue with the security guards. 

Tomorrow I’m seeing the orthopaedic surgeon who amputated my right leg in October 2014. I saw him once after I was discharged but this is the first time I’ll see him now that I’m properly ‘healed’.

It took a while to come to terms with my decision to amputate and longer still to accept it once it was done and there was no turning back. I think I was in shock for a considerable time and it took a lot longer than I anticipated to recover, physically and psychologically.

Now that I have recovered for the most part, I have fully integrated my “stump” into my body image, which has always been quite healthy considering I have spina bifida. I can look in the mirror without thinking about what I looked like before. I no longer try and put a sock on a leg that isn’t there and it’s been a long time since I’ve grabbed at thin air, which happened daily for ages. That was pretty upsetting. Actually, I cried like a baby the first time that happened.

To begin with, I didn’t want to go outside or to see people because I was overcome with the idea that people might stare. That was such a foreign feeling. It was so difficult for me to comprehend, even at the time, that I might feel so self conscious. After all, I have always used a wheelchair to get around and people have always stared.

Eventually, I did start going outside more and people did stare, as they always had. It’s just that now I was noticing. I felt so exposed and raw in those first few months back home. Even that passed. I’ve gone back to not paying so much attention to people’s lingering gazes.

The whole process has been really a surprise from start to finish. I was amazed at how many different extremely strong pain killers I needed to be on considering I didn’t expect to feel anything much but feel it I did. When the drugs started to wear off and I was due for more, I felt like death. Pain management has come such a long way though compared to 20 years previous, the time of my last major orthopaedic (spinal) surgeries. For that I am eternally grateful.

So, with all of that behind me, I’ll be discussing with my surgeon the unfortunate fact that I’ve started having problems with the other leg now. I’m not sure that I’m ready yet for round two but at least if I have to make the same decision again I know now what to expect.

Chelle Hope blogs about stuff at To be perfectly honest ...

Congratulations to New Zealander Robert Martin from Wanganui who has just been elected to an important United Nations position. He is now a member of the Committee on the Rights of Persons with Disabilities and the first person in the world with an intellectual/learning disability on that body. The Committee, which monitors how countries implement the United Nations Convention on the Rights of Persons with Disabilities CRPD, is made up of 18 disability experts from around the world. New Zealand ratified that Convention in 2008.

The election took place during the current Conference of States Parties to the CRPD, an annual meeting for representatives from governments and civil society from countries which are signatories to the CRPD.

Robert was the New Zealand government's nominee for the whole region and the campaign goes back to the days when Tariana Turia was Minister for Disability Issues. His bid has been strongly supported by the Disability Rights Commissioner Paul Gibson and People First New Zealand, the self-advocacy group which Robert helped found in the 1980s.

There is something very wise and calm about Robert. He is also a very generous person. This can be hard to understand when you hear his backstory. As a baby in the late 1950s he was removed from his family and raised in various institutions and foster homes. Life was harsh and abuse frequent. But, as he says, at least he could walk, talk and fight back, unlike some of the others. When Robert reached 15, the State tossed the angry teenager out of care. He had been denied not only human rights, but culture and identity. He often relates how as an institutionalised child he never heard of the All Blacks.

As a young man in the late 1970s he lived under the auspices of the NZ Society for the Intellectually Handicapped (which later became the IHC) where he led what is likely to have been the first ever strike by people with intellectual disability. They wanted to be treated as adults, make their own decisions, and be paid for their work. This activism became the basis of the People First self-advocacy movement in New Zealand. Robert’s leadership potential was noticed and nurtured by the head of the IHC JB Munro and others, and he became a local and international self-advocate.

He spoke at the United Nations during the drafting of the United Nations Convention on the Rights of Persons with Disabilities as a representative of the NGO, Inclusion International. He was made a Member of the New Zealand Order of Merit and became the first inductee into the Attitude Hall of Fame. His 2014 biography by John McRae, Becoming a Person, has recently been translated into Japanese.

Robert and Cindy Johns from People First have been in New York for the last couple of weeks doing last minute campaigning. From there he has been following the story of Ashley Peacock, a victim of modern institutionalisation. Robert’s new achievement seems to have been, not surprisingly, widely supported. It is sad that we haven’t heard much about it in the media. Attitude TV have sent a tiny team of two to cover the election.

Robert was a keen sportsman and remains a dedicated follower of sports. So it would be great if the ‘stadium of four million’ which Helen Clark hoped would support her UN nomination, congratulated Robert on this latest achievement.

Several years ago I was contacted by a man seeking help for his autistic son. As a researcher on autism I regularly get questions on the topic. But this story was shocking.

Their adult son Ashley was locked up in a unit on the old Porirua Hospital site, and the stress and anxiety of the incarceration was causing deteriorating mental health. The parents were living in Gisborne and travelling down as often as they could, but they needed to get him out of there and into quieter and more appropriate accommodation in their local community.

Could I suggest anything to help the gentle Peacock family? I have a middle class pākehā background that has given me an expectation that systems can be made to work. Something was broken that we could surely fix. Was it a referral to a better psychiatrist, an advocate at the DHB, or even a drama therapist for Ashley’s PTSD? Local disability organisations to provide ongoing support? I thought of the Peacock family over the years and hoped things had improved.

Meanwhile I was learning about wicked problems. Here was a classic example. Man locked up in an inappropriate facility at vast expense to the State. But how to get him out? The going in was easy, probably a mere signature by someone senior somewhere in the past at a time of crisis. Over the years there have been various diagnosticians with labels for the ‘illness’ they have identified from their training background. Numerous funding streams depend on those labels with most traced back to the Ministry of Health. But is this mental health or disability, as they don’t overlap? Policy in this area is extremely complicated and full of changing acronyms.

Psychiatrists alarmed by autism meltdowns assume he is dangerous. But why should we surprised that a sensitive autistic man who enjoys the outdoors has meltdowns when returned to a cell where there is nothing to do or see for hours and days and months on end? When the assumption is that the visit to the outdoors with his parents caused the ‘overstimulation’ the answer is therefore to the stop the outings?

Then in 2013 there was a picture of Ashley on the front page of the Dominion Post. Ashley was still locked up in seclusion with only a short daily outing into a fenced area. How come he was still there? I asked around and almost every disability organisation and many agencies knew about his story. Dave and Marlena were tireless advocates for their son.

Surely this DomPost publicity would help. But no. Many had, like me, tried to do something and had spectacularly failed. Even the intervention of the Disability Rights Commissioner hadn’t made a difference, although the Human Rights Commission and the Ombudsman both admitted this setting was not the right place for Ashley. New Zealand has ratified the United Nations Convention on the Rights of Persons with Disabilities but without the signing of the Optional Protocol individuals cannot take cases to the UN.

Until recently, there has been no real mechanism to get all those powerful people together to share and stretch the pots of money. We now have a national committee and senior officials and clinicians can meet at huge expense. Parents, even as official welfare guardians, have no power against such gatekeeping authority, and are often regarded as part of the problem.

Then last year Attitude TV screened an excellent documentary on Ashley’s seclusion in their 8.30 am Sunday slot. But only the disability community was watching and although viewers were shocked and horrified at such a blatant abuse of human rights and human care, we are not very powerful.

Then, earlier this year, a mother of a young autistic child who had seen the documentary decided to do something. She called a meeting with Ashley’s parents and advocates. I invited myself along. We called in people with specific skills. So we had a loose collective with the aim to free Ashley.

There had been some progress in the background including a change of clinicians. A trained team of care workers was ready to support him in his community house. (Although funding such a residence was a major stumbling block). Ashley needed urgent dental treatment for abscessed teeth but the ongoing risk aversion, which was at the root of the whole situation, meant it had been delayed for years. Autistic children and adults all over New Zealand get dental treatment under general anaesthetic, so why not him? In May he had several teeth removed and was reportedly much happier for the ending of such long term pain. Unfortunately, the State does not provide new teeth to replace those it allowed to rot.

We needed sit-up-and-take-notice publicity to get things moving. Something effective and powerful in the mainstream media that would force change. A journalist who had won an award for the exposure of disability abuse, and who was known to many of use for her investigations into ‘special’ education, was an obvious choice. Kirsty Johnston eventually got the go ahead from the Herald to work on the story, and she came to Wellington and sorted through the papers and complexity. She met the gentle man who liked the outdoors and horses and made delicate trout fishing flies. But, like his parents, she was not allowed to see the room where he lived.

On the morning of Tuesday 8 June two  stories went out with the Herald. By 7 am there were almost 300 Facebook shares, and the Facebook Page A Life for Ashley was buzzing. Various members of our group braved the broadcast media. By early afternoon both the Green and Labour Parties were calling for action. The Associate Minister was soon on the radio news saying it was complex but not a funding issue, and with a hint of blame said the parents (as if they had power) were working with the DHB to resolve the situation.

For anyone who spends any time in the world of autism policy, people and families, it is no surprise that services are often unprepared, inadequate or even non-existent for some people on the spectrum, particularly those who require a nuanced, complex, inter-agency response. Awareness of autism is generally low, although there are some helpful people who get frustrated when they can’t, for various reasons, provide the service required. So for families and parents commitment needs to be lifelong.

Only a generation ago many of our adults, and children, would be fully institutionalised, heavily medicated and largely invisible to the rest of us. Janet Frame’s novels and autobiographies provide glimpses of these constrained lives. The Porirua Mental Hospital itself ‒ and fortunately a ward has been preserved as a museum – harks back to days not so long ago when hundreds of residents lived in dormitories on this hillside forming their own community, beholden to the all-powerful clinicians and their latest treatments. This museum ward is now only a few hundred metres from where Ashley spends his days and next to the chapel he is now allowed to visit.

So what happens now? We must keep the pressure up for Ashley, his family, and now the other cases of disabled people in seclusion which Kirsty’s latest article has revealed.

Perhaps there are some lessons from this story. Wicked problems can (eventually, hopefully) be solved or at least subverted by astute collective activism. We shouldn’t accept injustice to humans. If something feels wrong keep at it. Fresh attempts are worth trying. Parents and families don’t give up.