The Empty Fortress

There are books that, more than others, carry legible traces of their history. This one is well-worn and shows signs of successive repairs. During one of these repairs, the original paperback cover was cut out and glued onto a sturdier one made of cardboard, preserving what was left of the image of a child pensively holding a doll. There is no tenderness on either of those faces – the child or the doll’s – just a sort of detached seriousness.

Because it comes from a library, this book includes a borrowing record, although there is no way to tell if it is exhaustive. The earliest stamp on the sheet affixed inside the back cover is dated 27 May 1982.

Who are you, who read the book at that time? Was it you who underlined in pencil the description of disabled children as ‘self-contained, narcissistic and empty’, or the part about the causes of their ‘emotional and intellectual death’? And what was your connection to those statements – did you evaluate them dispassionately or did they touch you personally? Were you sceptical or did you believe?

It’s thirty years later and the book still sits on its shelf at the library of my university, on the same floor as the letters of Antonio Gramsci, whose history it mirrors in reverse: one is an unlikely collection of writings by a man whom the state had tried, but failed, to extinguish intellectually; the other a work of bad scholarship whose popular appeal and institutional backing made invulnerable to criticism. One symbolises struggle and testimony; the other the persistence of an error. At Victoria’s library, both books have survived a number of cullings and cutbacks. Both books, as objects, carry material yet elusive signs of their successive encounters with their readers.

The Empty Fortress was first published in 1967 and is generally regarded as the text that either originated or popularised the ‘refrigerator mother’ theory of autism (neither charge is entirely correct, as I’m going to discuss later). The book’s author, Bruno Bettelheim, was an Austrian concentration camp survivor most famous in the field of psychology for a 1943 paper on the effects on the psyche of what he called ‘extreme situations’. The paper – one of the earliest attempts to document life in the Nazi camps – was largely based on Bettelheim’s own observations.

By 1967, Bettelheim had been for over twenty years professor of psychology at the University of Chicago and director of the Sonia Shankman Orthogenic School for emotionally disturbed children. It was in this setting that he engaged in the study of autism, a developmental disorder first (and independently) described by Hans Asperger and Leo Kanner in the early 1940s. One especially strong factor that drew Bettelheim to this condition was the resemblance of some autistic behaviours to what he had observed at Birkenau amongst the prisoners who exhibited extreme emotional withdrawal and a seemingly passive resignation to their fate – those that in the argot of the camp were called “moslems”. The book’s intent is therefore twofold: firstly, to argue that these two kinds of autism are manifestations of the same condition, in children and adults respectively; and secondly, that their common psychogenic origin points to psychoanalysis as the only effective form of treatment.

The latter hypothesis shaped the understanding of autism not only amongst laypeople but also in large parts of the scientific community for decades to come, and still enjoys considerable favour in some countries in spite of having been comprehensively discredited. However the larger issues is how it could possibly have been credited in the first place. Bettelheim’s book is so riddled with fallacies and circular reasoning, so devoid of scientifically falsifiable evidence – save for the results that he claimed to have achieved with the children treated by the school (it was decades before the data from his small and likely misrepresented sample was found to be unreliable) – as to beggar belief that it was ever taken seriously. In their study of the fortune of Bettelheim's ideas, Katherine DeMaria Severson, James Arnt Anne and Denise Jodlowski attribute this success to a conjunction of factors, namely

Post-war fascination with Freud and the Holocaust; his careful management of his public image; his careful attention to writing for a popular audience; and a generalized anxiety about the family in 1950s and 1960s America (Autism and Representation, 68).

The first and the last of these factors seem particularly relevant in the context of the persistent tendency to consider autism as a cultural condition, irrespective of its psychological, neurological and social specificity. When contemporary reviewer Eliot Fremont-Smith wrote in The New York Times that ‘The Empty Fortress is […] as much a philosophical and political book as it is a scientific one’ – a statement which he intended as praise and was duly recycled on the jacket of later editions of the book – he unwittingly emphasised one of the most damning and at the most time seductive aspects of Bettelheim’s rhetorical strategy, which consists in making statements of cultural as opposed to logical or scientific appeal.

To this we must add, in Bettelheim’s partial defence, that for contemporary audiences the contention – advanced by both Kanner and Asperger – that autism likely had a primarily organic (we would say genetic) origin was tantamount to denying that the life of the people who suffered from it could be improved. Belief in psychoanalytic treatment could therefore be perceived as the humane option, and in a sense it was: the prescription of conventional psychiatry and medicine at this time was long-term institutionalisation, frequently coupled with electroconvulsive therapy. Psychotherapy wasn’t the only alternative, but it was an alternative nonetheless. However in order for this option to be open at all, in adherence to Freudian theory it first of all had to be postulated (rather than argued or demonstrated) that autism had psychological causes that could be reversed by means of psychotherapy. The origin of autism had therefore to reside in severe psychological trauma analogous, in Bettelheim’s view, to the kind that made some concentration camp prisoners revert to a similar state as adults.

Enter the theory of the refrigerator mother, which wasn’t of Bettelheim’s own coinage but originated in comments that Kanner himself made at the time of his initial studies, when he observed that ‘emotional refrigeration’ was a common feature of the families of autistic children. Later he suggested that the condition might be related to ‘genuine lack of maternal warmth’. Bettelheim took this idea and put it at the centre of his theory of autism. However in so doing he also made it considerably more sophisticated and cruel.

Firstly we must note that the book is highly contradictory on this subject, in spite of its being absolutely central to Bettelheim’s entire thesis. Thus the author protests that ‘it serves no good purpose to make the parents of autistic children feel guilty as having caused the disturbance’ (403), and warns against the ‘myth of the perfect, all-giving mother we all wish we had had’ (28), or even goes as far as suggest that the mother’s role wouldn’t be so central (therefore so catastrophic when she proves to be inadequate) if the raising of infants wasn’t almost solely devolved to her for socio-historical reasons. However these few scattered comments do nothing to blunt the sustained attack mounted in the book against the parents – and most especially the mothers – of autistic children, an attack which admits no possible defence.

In light of the analogy with the concentration camp explicitly drawn by Bettelheim, we might expect him to trace the cause of autism to some comparably severe form of abuse or neglect, but of course that would clash against the observable fact that this is very seldom the case. The author’s only recourse therefore is to posit that there are critical times in the life of an infant when she must develop a deep bonding with her mother based on the carefully balanced and timely exchange of emotional signals. A mother that nurses her baby at fixed times, or who responds either too promptly or not promptly enough to the baby’s various demands, or allows the child to experience the world as frustrating at a particularly vulnerable time, might trigger the autistic Anlage and the inexorable onset of the condition. So it is not simply a case of a mother being ‘cold’ or ‘distant’ – for this too might not chime with real-world experience and call the hypothesis into question. The only way to lock in the Freudian approach is therefore to propose that even a warm or at any rate ostensibly warm mother could fail to read the signals correctly or read them but fail to respond correctly. In one of the book’s most chilling passages, Bettelheim observes:

A mother may be experienced as rejecting by the infant for a multitude of different reasons, connected with either her conscious or unconscious attitudes, her bodily or mental defects, her physical presence or absence, her unavoidable libidinal preoccupations, her aggressions, her anxieties, etc. (69)

In other words: there is no recipe to being a good mother, but if your child develops autism then it means you’ve been a bad mother. And in case the above passage might suggest to you – as the author himself seems inclined to provisionally conclude – that the ‘perception of rejection’ may derive from the child’s own neurosis and not constitute evidence of actual rejection, in the closing chapters Bettelheim shuts that particular door when he writes that ‘the background of all autistic children’ is that they are ‘utterly unacceptable to their parents for one reason or another.’ (355)

That is the indictment, finally: that while the behaviour of parents (by which again we mean mostly mothers) may vary widely, and even appear to be affectionate, the psychological injury stems from genuine rejection. And if a mother protests that she loves her child and seem convinced and convincing in doing so, it will be a simple matter of informing her that she harbours unconscious feelings of rejection.

There are many more examples in the book of such circular thinking, although few of them are quite as callous or as central to its argument. Bettelheim duly reinforced this core premise by selecting for his case studies three children from highly dysfunctional if not downright abusive families, and indeed it’s been speculated that he might have favoured children from that particular kind of circumstances for the institution’s very limited intake, which was of no more than seven or eight patients at a time.

Image via the Center for Social Media

By refining and expanding the refrigerator mother theory with the armoury of Freudian psychology, Bettelheim ensured it would speak to an audience that was culturally predisposed to hear such arguments, thus ensuring the popular legitimisation of his work, the vast increase of his personal prestige and a steady flow of benefactors and funds. Of course nowadays the appeal of pseudo-scientific hypotheses on the grounds that they fit in with dominant beliefs about causation is hardly diminished: so not only are Bettelheim’s ideas still in vogue in some countries, notably France and South Korea, but the equally disproved vaccination theory continues to enjoy significant support, causing unnecessary anguish and diverting resources from the investigation and treatment of autism.

In both instances we are dealing – and in a way that resonates with the autistic experience itself – with the problem of how we respond when faced with the limits of our knowledge. There is so much about the proximal causes and most importantly the dynamics of autism that remains mysterious to us, at the same time as we continue to seek better treatments and more effective ways to improve the lives of people on the spectrum, an effort that turns us increasingly towards treating society and questioning the notion of normalcy. But to acknowledge the mystery means to acknowledge the person. So this strikes me now as the single most enduringly offensive aspect of Bettelheim’s work: that cover, that full title, with its implication – that the fortress is empty, that the self with whom we are unable to communicate has no feeling and does not exist. This is the idea that more than any other we are still called upon to reject.

Bruno Bettelheim. The Empty Fortress: Infantile Autism and the Birth of the Self. New York: The Free Press, 1972.

This seems like the right place to recommend Hilary Stace’s doctoral thesis on autism policy in New Zealand, which you can read about and access from here. 

For a critique of the psychoanalitic approach to curing autism still prevalent in France, see – and consider supporting – Sophie Robert's corageous documentary Le Mur ou la psychanalyse à l’épreuve de l’autisme, available here with English subtitles.

Temple Grandin

Both of these women are Temple Grandin.

The younger woman is dressed as is expected of an actress at a film premiere. She looks stunning. The classic pose – one-quarter turned, leading with the right shoulder – accentuates her lovely figure. She projects total confidence as she looks into the camera with a smile that is both friendly and seductive.

The older woman is dressed like a rodeo enthusiast on a night out. She faces the camera as one would an X-Ray machine, unflatteringly exposing the whole surface of her body to its clinical eye. She lets her arms rest limply by her sides, which gives her a slightly hunched look. Her gaze is fixed into the lens, but she does not or can not fashion a smile, just an air of puzzlement and suspicion. Not cold or aloof, but unfamiliar and slightly apprehensive.

Both of these women are Temple Grandin, although the younger one is also Claire Danes, and tonight she is thoroughly locked into the role of young movie star. She made herself look unattractive for a film. She wore no make up and dyed her hair a mousy brown and wore flashy rodeo clothes decorated with gold and silver cattle pins, and spoke in a tense, loud monotone. But would she even be permitted to look less than totally stunning, and be less than perfectly charming, at the film’s premiere? And which is her self? Could she wear trousers and a loud shirt, could she place her arm around the older woman’s shoulders or hips as the picture is taken? No, she must look the part that is required of her, standing next to this older, less attractive, visibly quirky woman, and have eyes and body only for the camera. As if the older woman weren’t there.

The older woman is Temple Grandin all the time, and she is so much more interesting.

Temple Grandin was born in Boston in 1947 and at age three she was diagnosed with infantile autism. In those days the condition was very poorly understood, the prevailing theory in the United States being that it was caused by a failure of the mother to bond with her child, and virtually the sole course of treament – or non-treatment, rather – was life-long institutionalisation.

Temple’s behaviour at this time would have to be characterised as profoundly disturbed: she was non-verbal and prone to screaming fits, aggressive physical outbursts and flinging or smearing her faeces. Her mother however refused to accept the bleak prognosis. She was convinced that Temple could be brought back from the strange, distant place to which she had gradually disappeared from the age of about six months. She taught Temple to speak and to read, and enrolled her at kindergarten at age five and then at primary school. It was around this time that Temple, while still exhibiting many of the behaviours associated with autism, began to demonstrate special abilities, chiefly in art and in technical disciplines. These talents were allowed to develop into a sufficient foundation for her to enrol at college. There were still several subjects in which she didn’t do well – languages were a weakness, and she could never master algebra – and by all accounts she had very significant social difficulties as a teenager, but she had already achieved by now what according to medical science ought to have been unthinkable.

It is on those late teenage years, in the transition between boarding school and college, that Mick Jackson’s HBO biopic on Temple Grandin is primarily focussed, and for sensible reasons: there is much drama in Grandin’s struggle at this time against the rigidity of society and the education system, as well as her own, and it generates a tension that is quite beautifully portrayed by Ms Danes. Out of this struggle came independence: a career as a scientist specialising in animal welfare and as a consultant for the meat industry and designer of more humane and efficient feedlots, slaughterhouses and facilities for cattle.

However of greater interest to a wider public is Grandin’s other life, as an advocate and chronicler of autism. The boundary between these two lives is marked by her double online presence – Temple Grandin’s animal science website, Temple Grandin’s autism website – but in fact they are deeply intertwined. One of Grandin’s most consistent claims is that it was her autism that allowed her to gain her remarkable insight into the inner lives of animals, and conversely it was by studying animals and the apparent similarities between their thinking and emotions and her own that she developed her theory of the autistic mind. Her writings reflect this, and so the introduction of Animals in Translation is as touching and insightful a document of her life with autism as you’ll find, just as Thinking in Pictures – her main treatise on autism to date – is full of fascinating accounts of and speculations on how animals think and behave.

The correlation is at the centre of Grandin’s work, and concerns both the modes of perception of animals and autistic people and their emotions. On the latter, Grandin writes:

Animals and people with autism have simpler emotions. They are either happy, angry, fearful, or sad. They do not have complicated mixtures of emotion. Another similarity is that fear is the primary emotion in both autism and animals. (Thinking in Pictures, 202)

But just as crucial to understanding the balance of these emotions is her description of how other mammals perceive the world, based on the observation of Grandin’s own predominantly visual thinking.

One day I was driving on the freeway when an elk ran across the road. A picture flashed into my mind of a car rear-ending me. That would be the consequence for putting on the brakes. Another picture flashed up of an elk crashing through the windshield, which would be the consequence of swerving. A third picture came up of the elk passing in front of the car. That would happen if I just slowed down. Now three pictures were on the computer screen in my mind. I clicked on the slowing down choice and avoided an accident. I think what I have just described is how animals think. (Thinking in Pictures, 221)

If it’s true that at the core of autism there is an inability to develop a theory of the human mind – that is to say to understand the inner life of others, what motivates people to think and behave in the way that they do – then it is paradoxically matched in Grandin by a highly sophisticated theory of the animal mind. Just as importantly, hers is also a computational theory, as we can not only observe in the use of computer-based analogies evidenced in the passage above, but also infer from her reliance on a compartmentalised model of the mind in which different functions are not deeply enmeshed but rather neatly distributed.

Computational theories are central not only to fields of research such as evolutionary psychology, but also to our pop understanding of how the mind works. I believe this to be one of the reasons of autism’s remarkable mass cultural appeal. If the geeks of The Big Bang Theory really are everymen and not just objects of voyeuristic ridicule, as I would like to propose, it is because autism – and especially its so-called high-functioning manifestation – is increasingly seen as a cultural condition that is relevant outside the bounds of its clinical diagnosis.

Memory is central to this. One of Grandin’s cognitive advantages, the skill that perhaps more than any other has allowed her to succeed as an engineer and as a scientist, is what she describes as her computer-like capacity to retain highly detailed images in her working memory and save them in her long term memory, creating a repertoire to be manipulated to produce ever more complex conceptual and technical designs. When she had her first professional breakthrough – the design of a dip vat for vaccinating cattle for John Wayne’s Red River feed yard in Arizona – Grandin could not secure the services of a draughtsman in time for her deadline. However just by looking over his shoulder for a few minutes she was later able to produce a perfect design by means of what she stresses was an entirely mechanical process of imitation, down to the detail of purchasing the same brand of pencils.

Now most of us don’t have photographic memories, or the capacity to remember long lists of symbols and names, but our computers do, and if we could just use them to remember everything then maybe we could do anything, or at least keep our jobs, and live more ordered lives.

This is the inverse of the fractured autistic reality described by Jeff Noon, but it still carries a significant measure of anxiety. The stress of conforming and acquiring the required level of marketable skills; the struggle to carve out one’s place in a world that is increasingly socialised by means of algorithms: these are pressures that make the emotional palette of autistic people more broadly shared. The fear for one’s livelihood, the darting around of the eyes in search of economic predators are anxieties that define our times.

(Some of the analogies are almost depressingly obvious. Grandin writes touchingly about the complex system of rules that she designed as a teenager in order to comply with the demands of her peers and of her educators – rules that she had to be develop painfully, step by step, since they made no intuitive sense to her, nor could she infer one based on the others. Now consider our social media platforms, consider Facebook and Twitter and Google+ and who follows whom and how you manage your lists and who gets excluded and why: this is a direct translation of neurotypical patterns of socialisation into an autistic puzzle.)

Sometimes with Temple Grandin one can be blinded by the insight and the achievements and forget about the person. In this respect she was fortunate to find in Oliver Sacks an early biographer, and I commend his 1995 essay ‘An Anthropologist on Mars’ – the wonderful phrase is hers – for a characteristically humane account of Temple Grandin and her struggle not just for personal affirmation, but for meaning in a life that had no place for conventional friendship or romantic companionship. I hope that there are philosophers out there studying Grandin’s remarkable hyper-object-oriented ontology (in Thinking in Pictures she reveals, tantalisingly: ‘To this day certain verb conjugations, such as "to be," are absolutely meaningless to me’ (15)), but it’s her ethics that is at the same time more hopeful and more challenging.

There is in Grandin – and Sacks was perhaps the first to notice it and put it in words – a deeply felt, almost harrowing desire to make a lasting contribution to improving the lives of domesticated animals and autistic people. It is likely this aspiration for enduring meaning that makes her especially upset at the thought of memoricide, at assaults such as those on the library and the Olympic stadium at Sarajevo, designed not primarily to kill people or damage buildings but to obliterate culture itself.

Grandin has in fact garnered more than just recognition: she has become a heroic figure. But along with the possibilities that her remarkable achievements have unlocked for us, along with the hope that she inspires, come the implicit, bundled expectations: that with appropriate support and dedicated parents any autistic person can, and therefore should, become, if not like Temple Grandin, at least high-functioning. It is not a claim that she would make herself, quite the contrary, but the expectations are heavy, and fraught, and Grandin’s own attitudes towards the divide between the polar ends of the autism spectrum remain somewhat problematic.

When she published her first autobiographical work, in 1986, Grandin spoke explicitly, as did noted researcher Bernard Rimland in the foreword, of individuals who ‘recovered’ from autism, amongst whom she evidently included herself. She also described her own journey with a very uncharacteristic turn of phrase:

In 1950 I was labeled autistic and groped my way from the far side of the darkness. (Emergence, 11)

It is possible that this characterisation of the more profound depths of Grandin’s autism as a darkness came to her co-author, Margaret Scariano. In her later work Grandin never referred to the experience of those pre-verbal years as a void – in fact some of the most remarkable passages in her writings are the ones in which she describes those early states of being, still intact in her memory, as being awash with sensation and thought. The obvious connection here is with the stunning short film In My Language, in which Amanda Baggs asks us to accept that that world of sensation is not devoid of meaning, to see past that ghastly label, low-functioning, and to broaden our conceptual model of what counts as a full mind and a full person.

By contrast Temple Grandin includes amongst her achievements ‘becoming more normal’.

More knowledge makes me act more normal. Many people have commented to me that I act much less autistic now than I did ten years ago. […] My mind works just like an Internet search engine that has been set to access only images. The more pictures I have stored in the Internet inside my brain the more templates I have of how to act in a new situation. More and more information can be placed in more and more categories. The categories can be placed in trees of master categories with many subcategories. For example, there are jokes that make people laugh and jokes that do not work. (Thinking in Pictures, 31)

We are deep in the fraught territory of ‘overcoming disability’ here, and we might ask what is the point of appearing more and more normal – measured against the cognitive cost, the sheer work of it – once one has already been accepted by the community. Indeed several high-functioning autistic people have reported that continually smoothing out their symptoms for the sake of social convention can breed its own anxieties. Grandin’s cautioning against the possibility that a cure for autism, should it ever be found, would rid the species of the geniuses and highly creative thinkers that a mild combination of the genes might produce – expressed most recently in her 2010 talk at TED – is similarly problematic in that it subordinates the validity, the meaningfulness of the life of autistic people on what they can achieve, their utility. And while it is not my place to pass judgment on this belief, or pretend to be able to grasp the anguish and the distress, the isolation and the unhappiness that autism can bring, there is a growing chorus amongst ASD sufferers against this view, and one of the strongest voices belongs again to Ms Baggs. And so perhaps low-functioning autism is the new frontier, the new disabling label, operating as the autism label did when Grandin did the unthinkable and wrote an autobiography.

The spectrum of autism itself is an emblematic thinking tool: it grades people according to the degree of strangeness, of otherness, according to whether or not they are capable or prepared to mimic normal behaviour, and function – that most loaded of verbs – amongst their peers. We may have come to a new place, a place where we are ready to accept that diversity has other dimensions that cannot be plotted on a linear scale. But if we are there at all we owe it also to the courage, the strength and the clarity of Temple Grandin.

Temple Grandin and Margaret M. Scariano. Emergence: Labeled Autistic. New York: Grand Central Publishing 1995.

Temple Grandin. Thinking in Pictures: My Life with Autism. New York: Vintage Books, 2006.

Temple Grandin and Catherine Johnson. Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Orlando: Harvest Books, 2005.

Oliver Sacks. ‘An Anthropologist on Mars.’ In An Anthropologist on Mars (London: Picador, 1995), pp. 232-282.

The Woman Who Thinks Like a Cow, dir. Emma Sutton. UK, 2006. (Available on YouTube)

Temple Grandin, dir. Mick Jackson. USA 2009.




On an entirely separate note, Toby Manhire has written a very generous review of this blog for The Listener - you can read it here. I'll see you in two weeks.

The Questions Asked

This is not our daughter's story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it's not an untypical story. We're likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.

The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We have deferred to their expertise and initiative for too long, waiting to be told. We didn't know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don't wait. Don't labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I'm prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don't have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It's only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You're not going to run out of extra expenses any time soon.

That's the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here's where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it's not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don't get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister's doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.

It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?

One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:

This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 

It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven't changed a bit.

Via Timeframes

How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:

This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 

What’s 'meaningful learning', and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.

It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:

The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child's needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.

All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.

Falling Out of Cars

'Nothing can be trusted. That's the worst of it. Nothing can be saved, nothing retrieved. Nothing can be stated, nothing mapped out. Nothing can be fixed. Where then shall we go from here?'

A sickness that spreads between people but whose effects take place in the pathway between a transmitting device and its receiver. A slow, drawn out, worn out apocalypse in which the world ceases to produce meaning and grinds to a semiotic halt. A book that is only eight years old and already out of print.

I can’t get my head around the last part. Jeff Noon’s Falling Out of Cars came out early in the life of my dissertation and I had it down as a paradigm-shifting novel, the kind of work that creates its own sub-genre. Yet I learnt some time later that it wasn't going to be published in the United States, while in its native Britain it died the slow death of the novel of ideas whose ideas don’t quite catch on. But how? It seemed so relevant to me, so precisely symptomatic of the anxieties that fester in the crevices of our marvellous technologies of communication and memory. That others failed to feel the same way felt like a foreboding, too: surely my dissertation was headed in the same direction, the path of the unread.

‘When the words disappear, where do they go?’

A contagion that spreads between people but affects symbols and ideas, language and machines. The game of chess can no longer be played - not because people have forgotten how, but because it has lost all sense of its rules. The very coastline of the country has started to fray, ‘like a cloth, unraveling.’ Everywhere in the space between symbols and understanding there is noise. Literal noise: a buzzing and a crackling and popping, and then a blurring and a mist that make the outline of letters and images harder and harder to make out. Computers and cars get sick and die. Clocks no longer tell the time. Telephones connect you to random conversations or are plagued by a permanent static. Mirrors are the most diseased of all, and have to be hidden or covered so that the sick won’t be driven mad looking at their own mutated reflection.

We're losing ourselves. We're losing all the traces, all the moments of the world, one by one.
I have to keep writing.

Jeff Noon’s web page was last updated in February of 2008. The latest entry in his personal diary reveals that as of April 2005 he was working on a screenplay for Falling Out of Cars. Provisional title: The Noise. I assume nothing came of it, which is a terrible shame. I try to imagine what the score would sound like. (There is somewhere out there a recording of Noon reading his penultimate novel to date, Needle in the Groove, with soundtrack by the great David Toop.) Then he was involved with other writers in a work of experimental Web fiction entitled 217 Babel St. Ongoing, perhaps, it’s hard to say. Cobralingus came and went. Perhaps his writing world unravelled too, or the remarkable thread that linked all of his novels has become all entangled: the sexualised transmission of information (nymphomation); computer viruses crossing over into the human bloodstream; mirrors and feathers that record dreams; Lewis Carroll, Borges, Edgar Allan Poe - maybe it all became a horrible tangled mess.

In the book, too, the writer/narrator is troubled: made sick by the disease that had already claimed her young daughter ('Angela died in a tank. A tank of water. Isolated. They say her own heartbeat killed her, the rhythms of it. A terrible music. She drowned. She drowned in herself.'), she tries to keep a faithful diary, a record, as if that was the key to start making sense of herself once again. But the diary, which is to say the novel, doesn’t hang together; it, too, is diseased, riddled with mistakes and erasures, incoherent, feverish.

[…] all the words crawling around the paper, merging together, separating, and all the time losing themselves before my eyes, my cold staring eyes. Even the pages I had been working on just a short while before, they too were cast in this strange manner, and lost. The story, lost. Only here and there amongst the pages would a few lines of text emerge clearly from the black, smoky mess of ink, words I could not recognize as my own. Some other person had taken over the writing of the book. And then I bent my head a little, and brought the book closer, towards my face. There it was, on the edge of silence, a gentle fizzing sound. The book was making a noise.

When I first read Falling Out of Cars, sensitised as I was to reflections on culture and writing technologies and how we keep our personal and collective histories safe, I found it a mine of arresting images and ideas that seemed to both validate and challenge my thinking. There is the top floor of the Museum of Fragile Things, lined with books whose words vanish as soon as they are read; there is the electronic spellchecker gone mad, frantically searching through every possible combination of letters for tiny fragments of meaning, but finding nothing more coherent than 'your pyramids shall'; and then of course there is the road, that everyplace of apocalyptic literature and film, except here it doesn’t connect places but rather meander - always seemingly somewhere outside of London - and the characters don’t find themselves but rather lose themselves in it, like in that forest in Through the Looking-Glass that makes you forget who you are.

John Hillcoat's The Road.

It is along this road that the effects of the virus are made visible not in the form of chaos and destruction but the cars abandoned by drivers who no longer trusted themselves, or the measures taken to keep information at bay.

Only the most important road signs could be seen, and these limited to half a dozen basic symbols. LEFT, RIGHT, GO, STOP, YES, NO. Very few of the stores had proper names to them. They were called things like BUTCHER, or else BAKER, or even PRODUCT. There was more than one shop called, quite simply, SHOP.

It’s at this point, 39 pages into the book, seven years or so after my first reading of it and newly sensitised to an altogether different set of issues, that it struck me: the sickness that Noon is describing is not a form of amnesia. It’s autism. The rote social gestures, the pieced together conversations - remembered, ‘not created there and then’ - the people avoiding each other’s stare; and above all the perception of that noise, the hypersensitivity, what Poe in The Fall of the House of Usher calls ‘a morbid acuteness of the senses’. Textbook symptoms, yet strictly metaphorical, pointing to the notion of autism as cultural condition, a collective adverse reaction to the hypermediation of every aspect of our working and social lives.

(I am not, to be very clear, suggesting that this cultural hypothesis should have a direct bearing on our understanding of clinical autism and its causes, remedies and possibilities; rather that the sometimes irritating, facile flurry of interest in the latter, its sudden and sustained mass cultural appeal, may be due in part to a growing if not altogether explicit awareness that autism invests aspects of the self that are laid bare and made more vulnerable by the manner in which we live.)

If the sickness of Falling Out of Cars is autism, then it is a bleak diagnosis, a harrowing account of its effects on the self and on the fabric of our affective lives. But there is also a hopefulness of sorts in the attempt to inhabit the condition, to give it a sympathetic poetic description: not just of the constant and paralysing assault on the senses, but also of the countermeasures, of the coping mechanisms, and even of the possibility to sense and understand the world in a radically different way. So in the end the little ray of light that peers out of the story is not Tupelo, the girl who is immune to the virus and whose genes may contain the key to a vaccine, but the children who are ‘learning to live with the noise’, finding new languages and gestures to make sense of their changed world and transform that noise into a legitimate and natural source of meaning. It is in that brief moment that Falling Out of Cars becomes counter-apocalyptic, speculating that humanity might develop a new native language in which to state a new set of relationships between technology, work, the environment and society. It is a daring leap of the imagination, and a far too relevant message to find in an out-of-print book.

***

Which leads me tiptoeing into an awed coda, in the form of what are quite possibly the most extraordinary and challenging eight minutes on the Web. Amanda Baggs, In My Language. You must watch this.

I smell things. I listen to things. I feel things. I taste things. I look at things. It is not enough to look and listen and taste and feel – I have to do those to the right things, such as look at books, and fail to do them to the wrong things, or else people doubt that I am a thinking being. And since their definition of thought defines their definition of personhood so ridiculously much, they doubt that I’m a real person as well.

Jeff Noon. Falling Out of Cars. London: Doubleday, 2002. The page numbers for the quotations are available upon request. The final extract is from In My Language (and here the hat tip goes, I think, to Russell.)

Recipes (4): Making Pizza with Lucia

In appreciation of the work of humans.org.nz

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 was 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, 20g of fresh baker’s yeast, 275ml (1 1/4 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 flour 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.








I'm going back to Italy this week, so while I still plan to blog when I'm there, it might be slightly less teutonically punctual than usual. I apologise for any convenience that a lack of blogging might cause.