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

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

“You must be Franz Kafka.”

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

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

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

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

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

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

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

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

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

***

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

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

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

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

So here’s what we do.

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

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

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

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

to this

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

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

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

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

Oh, and the pizza isn’t bad either.

Giovanni Tiso

Together they have formed a research team to look at how young people with intellectual impairment like them can have more control over the transition process and resolve barriers many face in going on to work or independent living.  The statistics reveal that, compared to people without intellectual disability, people with an intellectual disability are more likely to be unemployed, have fewer qualifications, have fewer friends and live at home or with caregivers.  And there is a big gap between government policy and what actually happens.

So what can be done to address this? Their research questions include asking how young people can have more choice and control over their lives in this transition from school to post school lives.  Their focus groups include those with answers: young disabled people both at school and school leavers, famlies, educators and employers.

They have been jointly involved in research design. I asked what themes are emerging from their research as to what young disabled people want? After carefully explaining to me that there are ethical and confidential issues around their research which means they can not tell me what individual people might have said, they can reveal that some of the things the young people want are real jobs which pay proper wages, friends, to go flatting, to get married and have a family (ie the same things non-disabled young people want).  The researchers want to be valued for who they are and what they do and this, of course, includes wanting to have their research valued, to make a difference and to be paid, professional researchers. Colin is applying for funding so this can happen.

These two young people are impressive presenters on their topic and I’m sure are very skilled and polite facilitators of the focus groups.

When those with insider knowledge and lived experience conduct research it is very powerful.

Best wishes to them all.

(This was one of several papers presented at the New Zealand branch of ASID (the Association for the Study of Intellectual Disability) in Hamilton 26-27 August on how people with intellectual impairment can be central to the research process.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 But job interviews can prove to be a major hurdle.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am a woman with Asperger’s Syndrome, aged 41 and living in Christchurch NZ. My whole life story would take too long to tell, and is all very sad. I am on the Invalid Benefit, having other health issues as well, and I reckon that I and others like me are treated very badly in this country, forced onto this tiny benefit and treated like it is our fault. I was born like this, and I reckon it was due to chemical exposure one of my parents suffered (but I’m not allowed to say too much for legal reasons). I still have to live with my parents as rents are too much, you are not allowed pets, and group homes expect you to be physically well and able to work. This leads to more and more friction.

Five months ago, my father and I got it into our heads that we needed an easy to heat, easier to care for unit, as opposed to the dilapidated house we previously had in Sydenham. The agent persuaded us we could only get $180,000, when, looking back, the house is on valuable L3 land, and was worth a lot more. We bought a unit out in Bromley for $200,000, using $20,000 of my life savings (from living at home and not spending on myself).

The unit was the biggest mistake of our lives! It is nowhere near the shops, when I can’t drive, the main road (Pages Rd) is impossible for me to cross, and I have lost my independence. We argue every day, as we are jammed into a tiny space. After 22 days, we are considering putting it on the market! I was especially worried when I found out we’d only get $180,000 for the unit! How on earth will we ever get another cottage close into the city on reasonable sized land? My mother is saying no Linwood, which isn’t surprising, as Eastgate and its huge shops are too physically tiring for her or me to get around. My mother has lost her independence too, being unable to back down the drive or walk to the bus stop.

I wish there were safeguards to stop vulnerable people like us from getting taken for a ride. We have enough to put up with. I hope to write again in a few months with a happier story – of having a cottage in Sydenham – and not minding peeling paint, weeds or spiders – and having bought the precious plants my mother lost. I hope the social services recognise my need for space and closeness to town and good shopping, and actually help me with things like the garden, rubbish removal (you often can’t burn garden rubbish in Chch) etc.

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

Dianne says:

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

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

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

FINN’S STORY

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

FINN’S PERSONAL ACCOUNT OF ASPERGERS

An email written a few weeks before his death:

Hi,

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

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

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

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

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

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

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

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

All the best,
Finn

For those who don’t know me, I’m Matt Frost. I work as Policy and Information Researcher at CCS Disability Action National Office in Wellington. I am also proud to say I am an Aspie!

Last month, I was privileged to be able to attend ceremonies at the United Nations in New York. This is somewhere I have always wanted to go as I’ve always been interested in international affairs. I accompanied my friend and colleague, Mike Gourley who is President of the New Zealand Disabled Persons Assembly, as Mike’s support person. This was great as we showed that two disabled people could be a strong support for each other- something commented on very favourably in New York.  

The Franklin Delano Roosevelt prize ceremony was incredibly special for me as a New Zealander. His Excellency the Governor- General, accompanied by Her Excellency and his party, accepted the award on behalf of New Zealand. This prize was awarded to New Zealand as the country which has made noteworthy progress towards the goals of the United Nations Convention on the Rights of Persons with Disabilities. Ban Ki-Moon, the UN Secretary- General was also present. It made me aware as someone with an impairment that we have made a lot of progress and are respected internationally, but that we as a country have a strong reputation to live up to and that we need our future actions to reflect this. It was also really special to attend the Entry into Force of the UN Convention- a policy document which will improve the lives of people with disabilities (including ASD) worldwide.  

In summary, I was immensely proud to represent our country and disabled people in this way. New Zealanders I feel should realise what achievements the awarding of the prize and the Convention actually are. The prize recognises that we as a country (and the advocacy of disabled people in New Zealand) had a powerful role in obtaining world recognition of the concerns of disabled people worldwide. We should celebrate that- but also commit to continuing progress towards a society that fully includes all disabled people- including people with ASD- and their families/whanau. Matt Frost
Policy & Information Researcher
CCS Disability Action DDI    04 801 0861
MOB  027 309 3706
EML   matt.frost@ccsdisabilityaction.org.nz http://www.ccsdisabilityaction.org.nz/  

At the launch five speakers with lived experience of autism talked briefly about the significance of the Guideline. Three were people on the spectrum and two were parents. Among the speakers was Jen Birch who is an adult with autism who has been involved with the Guideline development for several years and is the author of Congratulations! It’s Aspergers Syndrome, and Matt Frost who is a young adult with autism who will convene the ASD Guideline Implementation Advisory Group.

The full Guideline and a Summary are available from the Ministry of Health http://www.moh.govt.nz/moh.nsf/indexmh/nz-asd-guideline-apr08

The next step is the hard job of implementing the Guideline so the services and supports it recommends are available to people on the spectrum and their families throughout New Zealand.

The New Zealand Guidelines Group (http://www.nzgg.org.nz) has the contract for the implementation of the Guideline and will work alongside the Ministries of Health and Education which have led the work so far. An Implementation Advisory Group of representative people from the sector is being set up to decide on priorities, identify gaps, develop various workstreams, and generally oversee the implementation of the Guideline. There will be ongoing opportunities for input from interested people.

…………………………………………..

The following is my speech from the Guideline launch: 

“I am one of the lucky parents in the autism community. I had a supportive family. No one took my child off me and placed him in an institution and told me to forget about him. No one told me that he couldn’t attend their school, no one asked me to pay for a teacher aide, and neither was he asked to leave school because they didn’t understand autism.  No one said his behaviour was too difficult for respite care. No one said he was too disabled for a job, for independent living, to be treated as a human being with feelings, hopes and dreams. No one said it was my fault.

 Many parents have fought and continue to fight for their autistic children to be supported to live ordinary lives like other New Zealanders. Often the mother copes alone – and her whole life involves managing the complex care requirements of her child – the erratic access to education, the turnover of care workers, keeping the family together and the negotiations required to keep all the balls in the air. 

In contrast my experience was of a friendly Plunket nurse who arranged for my son to attend a local 3 year check one day in 1988. In that same hall was a speech language therapist, an educational psychologist and early intervention specialists. Within two weeks there was a plan around my son where specialist teachers came regularly to playcentre and home, and he also had weekly speech therapy. All free, all part of an integrated system. At school he continued daily on-site speech therapy.

Note: this was before the big fragmentation of the 1990s.

I did not regard this as lucky – this integrated approach just seemed sensible and instinctively felt right. It is ironic, and a sad commentary on the world in which we live, that it has taken 20 years and best practice evidence from around the world, and over 300 recommendations, to attempt to build a collaborative system that just instinctively feels right. But this time it is going to be better, more effective and more equitable. This is a whole of life, whole of spectrum, whole of government approach.

But we will not get there without a supportive and skilled workforce. Autism is also the focus of my academic research and I have dug into the 10 year history of the guideline development. Again and again there are the names of the quiet champions of the public service who have kept on calling the meetings, getting the funding, seeking out research, keeping the enthusiasm going.

And thanks to the parents for all their blood sweat and tears for their struggles to ensure our children live and interact and are educated with their families and friends and peers. And to the wonderful children (like my son who has put up with talking about him all these years). And thanks also to Minister Ruth Dyson for her ongoing support.

Now we have to get on with the job.

Dr Abraham’s motivation for this research is to encourage ‘health professionals to consider a diagnosis of autism, rather than suggest purely a mood, psychotic, or personality disorder, in patients presenting with signs similar to Janet Frame’ A correct diagnosis should help them get appropriate support to participate in the community, not be separated from it. She decided on HFA rather than Asperger Syndrome (AS) because of Janet’s own indication that she had early language delay (the only real difference between HFA and AS).However, Janet Frame’s niece who has an adult child with classic autism, has taken exception to this suggestion. She says Sarah is wrong to make such a claim.

This controversy illustrates that the autistic spectrum is wide, growing and hard to define. It shows both the current fascination with autism and the high esteem in which Janet Frame is held. But it also reinforces my own theory of Janet Frame. In the year 2000 I wrote an essay (since lost) as part of my study for a Master of New Zealand Studies about whether Janet Frame had Asperger Syndrome rather than the schizophrenia she was misdiagnosed with in the 1940s. At the time, the fascinating and detailed authorised biography by Michael King had just been published, I had a newly diagnosed teenage son, and I had long been an admirer of the unique and creative way Janet Frame used the written word. For sources, as well as her autobiographical and fictional writings (a distinction often blurred by Janet), the Turnbull Library had an exhibition of her work containing video and audio sources.I discussed the AS theory with Michael King who indicated agreement but advised me not to publicise it at that time. At the Autism NZ conference that year I mentioned it to Tony Attwood. He said many people previously misdiagnosed with schizophrena were actually autistic. But now Janet and Michael are both dead so we cannot get their reaction to this current controversy.

I forget all the indicators of AS I found in the biography and writings but here are a few. As a child she wanted people to keep still while she told stories as she was distracted by movement (indicating the typical AS monochanelling). She was always regarded as ‘different’ and approached her academic and other work in original and unusual ways, and lived much of the time in her own world. She had a very good visual and auditory memory, was very sensitive to light and sound and describes an intense catatonic aural/visual sensory experience by the Clutha River. She tried in vain to soundproof her houses. She was very literal and when asked by a psychiatrist whether she heard voices she answered (of course), Yes. She was very logical and kept on at a job until it was finished. Writing and being a writer were her passion, but she had little interest in her books, sometimes not even keeping copies, once they were published. There are numerous examples of her doing the logical thing not the socially appropriate thing.She had few friends but developed a dependence on the young psychologist John Money to the extent she had suicidal ideation when he cancelled appointments. When he invited others to meet her she quietly turned her back on them until they had left (a logical coping method for something happening out of context). She had a variety of acquaintances who acted almost as her social interpreters, such as Frank Sargeson. She was a keen letter writer but preferred to write with green ink at odd angles across the page. She was an early adopter of IT technology. She hated interviews for their unpredictability and because they required her to converse and interact which made her anxious, rather than write. When she had enough of these dreaded interviews she politely said goodbye and left even if the interviewer hadn’t finished. She had a strong social conscience, and empathy with the state of humanity, but was often naïve about the intentions of others.Trying to cope with the expectations of others was extremely stressful for her. As a new teacher she ran out of her classroom when the inspectors were due and never returned because of the anxiety it caused.

No one uses the written language in quite the same way as Janet does. Temple Grandin talks of various types of autistic abilities: the visual (artists and engineers), the aural (musicians), those with an affinity for numbers (the mathematicians) and those whose special ability is with words (such as writers).

In Janet’s writing there are frequent descriptions which make sense from an Aspie point of view, such as the title: An Envoy from Mirror City. Her children’s book Mona Minim and the Smell of the Sun – another Aspie title – is about an ant finding herself in the wrong place. It also contains endless word plays on the word ant.

Since my initial research in 2000 two more sources have become available. A 2004 documentary called Wrestling with the Angel contains interviews with many of her friends and acquaintances including the last interview with Michael King. Although autism is not mentioned many describe behaviours that are highly suggestive of it.In this documentary Michael King also gives the historical context. He believed eccentric geniuses like Janet did not have a place in conformist mid century New Zealand where ‘normality’ was very circumscribed. When the lobotomy was suggested to her she was reassured that someone who previously had one was now ‘happily selling hats in Dunedin’. This vision of normality was horrifying for Janet who just wanted to be left alone to be a writer.

An exciting resource is her recently published autobiographical novel Towards Another Summer. This was written in 1963 but never published in her lifetime possibly because of the childhood she describes would be regarded today as abusive. But it is the insights into her life and mind which are fascinating. Living in London and with the schizophrenia label revoked she writes, ‘I was a certified lunatic in New Zealand. Go back? I was advised to sell hats for my salvation’. But her character Grace still feels alienated and puzzled by the human world, ‘for so long she felt not-human, yet had been unable to move towards an alternative species…’.So she becomes a migratory bird. It also contains the most brilliant insight into anxiety as she prepares for a weekend visit to the family of a journalist interested in her work (note it is also one sentence – yet another example of her inventiveness).

‘Now journeys were not simple matters for Grace; nothing is simple if your mind is a fetch-and-carry wanderer from sliced perilous outer world to secret safer inner world; if when night comes your thought creeps out like a furred animal concealed in the dark, to find, seize, and kill its food and drag it back to the secret house in the secret world, only to discover that the secret world has disappeared or has so enlarged that it’s a public nightmare; if then strange beasts walk upside down like flies on the ceiling; crimson wings flap, the curtains fly; a sad man wearing a blue waistcoat with green buttons sits in the centre of the room, crying because he has swallowed the mirror and it hurts and he burps in flashes of glass and light; if crakes move and cry; the world is flipped, unrolled down the vast marble stair; a stained threadbare carpet; the hollow silver dancing shoes; hunting-horns…           

It’s no use saying Freud, Freud. People do, you know. Like squeezing a stale sponge.’ (p 13)

(Later she dismisses psychiatrists after meeting a young medical student ‘Harvey would make a good psychiatrist, although his face has not yet that certain expression which betrays the necessary constipation of feeling’) p. 31

Towards Another Summer reveals other common AS traits such as issues with linear time, coped with by being extremely early for appointments and public transport. She also refers to literal interpretation of words, for example being puzzled by the constant instruction in childhood to ‘pay’ attention.This is all very well but some like David Cohen in the Listener (10 November) have questioned the point of posthumous diagnosis. However, I agree with Sarah Abrahamson that there needs to be more understanding of autism by health professionals so people presenting with such traits are properly understood. Linking famous names to AS is one way to do this. It also helps to reframe the autism traits in positive terms when they are linked with famous people. They become special abilities not obsessions or abnormal interests. The special abilities of those on the spectum can be astounding and boundary pushing. We need to have a wider view of what constitutes creativity, humour, empathy, friendships. And accept this might go with a preference for one’s own company or different ways of ‘being’ in the world. And certainly broaden our view about what is ‘normal’.

Janet Frame clearly felt different from other people. She may have welcomed membership of the autism community, had she known about it. She may have: Michael King indicated her fascination with the autism of her grand-niece. There are rumours that she even had an official diagnosis.Whatever the real situation was, there is a powerful message in Janet Frame’s incredible life and writings about understanding, acceptance of diversity and inclusion.