Is the impression I have correct? Are there any signs this is changing in Europe? And is it in the US only a matter for certain academic jobs – say: you want to make an offer s/he can’t refuse to a brilliant established professor, or does it also occur at entry-level positions? I’d love to read your views and experiences.

As to the desirability of the practice of spousal accommodation, I have not made up my mind yet. One the one hand, I see around me excellent young academics who are virtually unemployed because their spouse is in a place where there is no job for them, and they don’t want to be living far away from their family; on the other hand we tend to think that jobs should be allocated on a fair equality of opportunities principle—and it is unclear whether spousal accommodation meets this principle. It probably depends on the exact nature of the spousal accommodation: if it merely entails supporting one’s job search on the existing job market, then it seems fine; if it is the actual creation of a job for a spouse, or the striking of a deal with another department that they hire the spouse for a vacancy that is about to be opened, it seems more problematic.

So, here are two other movies I’ve seen recently, that I’d like to mention for different reasons.

First, there is Ben X, which is a movie about a teenage boy, called Ben, who has Asperger’s, and who is heavily bullied at school (he goes to a regular school, not to a school specialized for pupils with autism). What I really liked about it, is that the framing often switches between his standpoint (and hence how he experiences the world, that is: fragmented, overwhelming, to some extent incomprehensible), and the world of those around him (his mother, his friends, his teachers, the boys who bully him). I used this movie last December in my class on ‘Film and Philosophy’. I first watched it twice at home and then, at university, on a bigger screen. This is a movie to be seen on a bigger screen, if one possible can, precisely for the parts where the perspective of Ben is taken. On the critical side, some would say that Ben X is cinematographically a B-movie; still I found this well worth watching.

The other movie I recently discovered is a classical movie from 1963, A Child is Waiting. According to the official plot this movie is about a teacher in an institution for mentally disabled children, who becomes very focused on and involved with one child. I can’t recall whether he was labeled as having autism, but many of his behaviors are very much in line with it. Personally, what I found much more interesting than the issues the teacher has, are the tensions which arose between the parents when they figured out their child had problems, and their inability to accept him as he is; and, a powerful portraying of the feelings of the boy, who needs his parents, yet they never visit him. It was interesting to get a 1963-perspective on autism, when the ideas and practices on the treatment and education of mentally disabled kids were so different, and when there was clearly still much stigma attached to having a child with autism.

One movie I’m curious about is Loving Lampposts, but I only discovered it this week, and it will take a while before it crosses the Atlantic and I can watch it. Which movies on autism do you recommend?

ps: I’ll be back with some more posts on autism after next week – I am facing some deadlines that need to be tackled first.

How does this question of knowing and understanding applies to autism?

People with autism often say that the world doesn’t understand them; similarly, parents of children with autism have repeatedly said that other parents don’t have the beginning of an idea of what it is to raise a child with autism. With autism in particular I feel that the science-based books or information leaflets that try to explain in general terms what autism is, give very limited insights in how it is to have autism, or live together with a person who has autism. Books that take a narrative approach, and try to tell a story, may be more effective; as may be the case for films (as long as they are well made, on which see my next post). Parents and other carers of children with autism thus have a few resources to resort to if they want to try to create more understanding.

But creating an understanding of what it is living with autism seems much more difficult. For one thing, every person with autism has very different aspects of it: some have oversensitive senses which other don’t have (or some have oversensitive touch while other have oversensitive hearing); some have serious speech problems which others (Aspergers) have not; some are very introvert, while others are not (in fact, some people with autism may have the opposite, that is: they talk with everybody without any reservations); some have ‘odd’ behaviors (hand-flapping, lamp-cuddling) which others have not; some have serious problems with their fine motorical skills which others have not; some may have strong anxieties and ‘irrational’ fears, which others have not; and one can go one like this. Moreover, autism often (but not always!) comes with comorbidity: severe cognitive disabilities or ADHD, for example.

Apart from books and films, I know of one other powerful attempt at trying to make the neurotypical person experience what it is to have autism: het hoofdkwartier (literally: the headquarter). Het hoofdkwartier is a project run by the Leo Kannerhuis (a center specialized in autism in the Netherlands) which has been running since June 2006. It is a gigantic iron head (my estimate is that it is about 4-5 meters high), which has two openings. If one enters the head, one sees a number of television screens. The task is to take a headset, and try to make sense of the stories that are told on the television screen. It is absolutely bewildering. One is bombarded with fragments of sentences and other sounds. The challenge is not so much their level, but much more their fragmented nature; the visitor does understand half of the stories that are told, but there is so much noise that it is very heard to piece the stories together. After about twenty minutes, the visitor has made a full circle, and can leave the Headquarter.

I visited the Headquarter in 2010, and I still recall coming out of the Headquarter and feeling completely flabbergasted. Literally. That world that was presented to me was not only very hard to follow and understand, but it suck my energy being in there, trying to understand what people on these television screens were trying to tell me. And realising that this is how people with autism, including my son, have to cope with the world, was hard. Visiting the Headquarter was disturbing, but also directly useful, since it helped us in improving our parenting. For example, we realized much better that we had to look for strategies to protect him from begin bombarded by sounds, and that we had to intensify our efforts at communicating as clearly as possible. So we now regularly allow/encourage our son to use a headset (to block out outside noises), also in settings where this is considered ‘socially inappropriate’; or we physically take him out of a situation that is exhausting him (family gatherings is a good example – way too much noise and voices and lines of conversations).

Unfortunately, as of January 1st, the Headquarter can no longer travel to locations, due to subsidy cuts. But I hope that Leo Kanner Huis finds a place which is easy to visit, where they can build it on a permanent basis, which should be less costly. It would be a very good place to visit for anyone who wants to better understand how it must be living with autism.

update: There is an excellent post over at Neurotribes written (and in part edited/collected) by Steve Silberman, which addresses exactly the question what needs to change. DO go read it.

I want to focus on one very concrete thing which is relevant just for the Dutch context. The Dutch government wants to cut 300 million annually on the budget for special needs education and for special needs help in regular schools. The idea is that more children should go to ‘regular’ schools (since, as has been explicitly said repeatedly, special needs education is more expensive), and all teachers in regular schools should get additional training to be able to deal with the disorders and problems kids in their classrooms have. These classrooms are already large now – often 30 kids in a classroom, and burnout among teachers is already a serious issue. I think it is a disgrace that such a rich country, which annually spends more than 5 Billion on direct and indirect subsidies of fossil fuels, and about 11 Billion in sponsoring private home ownership via taxdeducations, wants to cut on its most vulnerable children. We, the Dutch Taxpayers, can easily afford to not cut special needs education if only we want to; but our politicians think those teachers and kids can do with a little less. I hope something will happen that avoids this cutback, and that our politicians reconnect with reality in the classroom.

One disclaimer before I start: I am giving here my analysis of public discourse, not of all discourse people encounter in their lives. I am sure many children with autism and their families receive great moral and practical support by their extended family, friends and neighbors. I don’t know of any studies on this, so am not going to comment on this in general terms. This post is about what people say in public settings – newspapers, other media, interviews, parliament, public gatherings.

In the Netherlands, there is a widespread tendency to believe that the increased incidence of children diagnosed with autism (and ADHD - they are most of the time taken together in this discourse which I think is problematic), and the increased number of children taking Ritalin, is not pointing to an increase among the ‘real’ cases. Rather it is due to society: the government which forces labels on kids if they want to qualify for help, the pharmaceutical industry who wants to maximize its profits, and also the failings of teachers and parents. Teachers (who in primary schools overwhelmingly are women) are said not to be able to keep order in their classrooms, and can’t deal with unruly children – so they requests parents to ‘get their children a label’, that is, to get a diagnosis, and then to request medication so that the children are easier to handle in class. Similarly, parents are said not to be willing to make enough time and spend enough energy on raising their kids (especially parents who both have jobs are blamed), and in order to restore their failed child raising, they resort to a medicalisation of their kids unruly behavior.

I have repeatedly read this argument, or heard statements to this effect ever since I started to pay attention to public discourse on autism and ADHD (which is, not surprisingly, when there was the first suspicion of autism for my own kid a couple of years ago) – often they were stated ‘in passing’ – a side remark in a column, a joke at a dinner table, a sneer on Twitter, or a politician who ‘has heard of such a case’ and thinks this anecdotal evidence justifies his political views. So yes, I am aware that this is my interpretation of the public debate and that my characterization of this public discourse is not based on scientific studies, but I can at the same time report that many parents I know, and parents and organizations that I follow on Twitter, share this view.

Basically the public concerns are these: the number of kids in special needs education are increasing; the number of kids in regular education who have a diagnoses for a disorder such as autism or ADHD and hence are entitled to specialized help, are increasing too; and the number of kids on medication are increasing. These tendencies cost the government and hence the taxpayers money; and since (some of) these increases are significant, many believe that surely this can’t be ‘natural’, but rather there must be some social forces behind it (either the manipulation of the pharmaceutical industry, or the failures of parents and teachers who should be able to get by without these kinds of special support).

Last December, one particular letter to NRC, a ‘quality’ newspaper in the Netherlands moved me to act. A reader wrote that the causes for the increase in the number of children diagnosed with autism and ADHD lies with society: schools do not want restless kids in the classroom and hence teachers want them medicalized; and parents would be “relieved” with a label, since “it lifts their duty to critically scrutinize their own parenting” (quotes from the letter, my translation). If you know Dutch, you can read my full piece here.

Unfortunately, it seems that when it concerns the issue of the increase of the number of cases diagnosed with autism/ADHD, every opion is taken to be as valuable as another, and people don’t always seem to consider how their stated opinions will be received by those about whom they are talking. Even some of my fellow academic philosophy friends talk about autism/ADHD (and other disorders, in fact) mainly or only in terms of ‘overdiagnosis’. Frankly, I was/am still fed up with this discourse, since it is only one part of the whole range of problems that need to be discussed, and in society at large it gets all the attention. If all the people who are raising their voice regarding ‘over-diagnosis’ would also speak up on issues such as how to make sure the waiting lists for diagnoses are shortened, that there are enough places in special needs education, and that parents don’t have to quit their jobs because otherwise they can’t handle the enormous care burdens (and management and negotiation of that care) that is often required for a child with special needs, I probably wouldn’t have been so angry. But now I was, and I still am.

In the Op-Ed linked above, I said, firstly, that there may be plausible explanations for the increases in diagnoses that allow for a genuine increase in the actual cases of autism (hence it may not all be over-diagnoses, but rather an increase in the actual number of cases, and hence a corresponding increase in the diagnosed cases); we should keep an open mind that this is possible. I am not a specialist on this, but will write a separate post on this question over the next week, since it would be very interesting to hear what the specialists among our readers have to say. I am not saying there is no over-diagnosis, and even less so that there is no misdiagnosis, which surely there is; and it may be plausible that some disorders are more easy to misdiagnose than others, as it is also equally plausible that some part of the increase can be explained by the fact that access to special needs education and specialized care are made dependent on having a specific diagnosis. My point is that above all, we need to be open-minded about this – yes, there may be over-diagnosis, but there may also be over-diagnosis in combination with many genuine cases that are not diagnosed (and where people could benefit from diagnosis!); there could also be reasons we don’t know yet why there is a genuine increase in the actual, real cases of people with autism. This is a complicated area, and I think we need to be open-minded about the possibility that there are many things we do not know yet.

Second, I argued that we shouldn’t always focus on the (alleged) over-diagnosis; there are also still many cases of people who effectively have autism, but are not diagnosed—yet we hardly pay any attention to under-diagnoses. Yet under-diagnosis (non-detected cases) can cause very serious problems, not just in children, but also later on in adult life (like constantly losing one’s job or having problems with intimate relationships or parenting, without being able to understand why). I have first-handedly know two cases of people who fit this category, and heard many more accounts from autism professionals, and many of these lives are tragic, and could be much better if these people were properly diagnosed and received the help they need. Of all the people with autism, I worry most about this group: children, youngsters and adults, who have no idea that they may have a form of autism, who have serious problems communicating with others and building social relationships, and who, sooner or later, run into serious problems in their private or professional lives. By always talking only about over-diagnoses, and suggesting that we have turned autism into ‘a hype’ (claiming the label when we don’t need it) we are not making it any easier for this particular group of non-diagnosed real cases to be helped.

Thirdly, I argued that the discourse, as it develops, is systematic for blaming individuals if there is a problem, rather than trying to understand what it must mean for a family with a child with autism/ADHD to live with this condition. Basically, a significant share of the wider public has no clue, and rather than trying to better understand, they start blaming parents for the ‘socially unacceptable’ behavior which does indeed often characterize small children with autism: can’t these parents just raise their kids properly rather than seeking expensive specialized psychiatric help? Blaming parents is only adding insult to injury, since what parents of children with autism need is understanding, good advice and support.

A letter sent to the newspaper (for which the editor later called me up to apologize that they did publish it since it was so viciously ad-hominem), accused me of not having any authority to speak on this matter since it could not be deduced from my CV that I had any scientific (medical/psychiatric) expertise on this, and basically repeated the same mantra: there is nothing (medically/psychiatrically)’wrong’ with those kids, we just need to raise and educate them properly. But I also received a large number of letters by parents, teachers, and care professionals who recognized the lack of understanding in society, and the blame being put on those caring for kids with autism. I have written a dozen of op-eds in my life, but have never received such an amount of endorsing reactions. I think that’s telling us something.

That’s why we have Autism awareness day/week—to raise awareness and hopefully in this way increase our support and understanding for children and adults with autism as well as for those who care for them, in a world in which they are much of the time not well understood, and insufficiently supported.

So I am hoping to post one autism-related post every day, covering various aspects – scientific discussions, books and films on autism, a thread on the bright/funny sides of autism, and a few more. If anyone has additional suggestions or special requests, feel free to make suggestions.

This opening post also serves as a place where all of you can post links to your own contributions to autism awareness day/week, and to activities (whether in cyberspace or beyond) that are organized within the frame of World Autism Awareness Day.

Ze schreef een klein gedichtje
het had niet veel om handen
maar het was als een klein lichtje
dat in het donker brandde.

*****
She wrote a little poem
it didn’t mean much at all
yet it was like a tiny light
glowing in the dark.

Around 1996, when I had my first paid job in Leuven, and we were all still paying and being paid in francs, guldens, pesetas or deutschmark, I bought this wonderful piece of art from an emerging artist (she may actually still have been a student of art). As the picture shows, her name was Elke, and that’s all I remember, apart from the price (1.000 Belgian francs, which nowadays would be 25 Euros plus inflation). And I also recall that Elke was delighted that I bought her work. Elke, I hope you have made many more of these pieces of art, and that you allow me to reproduce this one here to celebrate International Women’s Day!

All this reminded me of a delightful thread we had here at CT a while back, in which Trane suggested we could all come up with translations of our own favorite poems. In slightly amended fashion, I suggest the following: on 21 March, World Poetry Day, I will open a thread where everyone can post a poem of their own making or their favorite poem by someone else – and in both cases with or without translation into English/Globish. Go write, people!

Reddy defends the position that economics is a profoundly value-entangled science, and that “Good theory is theory which illuminates the world, and good theory cannot start from a-priori premises which are disconnected from the world. Good theory has to start in part from observation from the world.”

I agree with every word Reddy says, but am a bit puzzled why Mehrling sees Reddy’s position as ‘a strong position’. In my view, if it is regarded (by economists?) as a ‘strong position’, that is just because economics has so forcefully tried to distance itself from any evaluative or otherwise ethical concerns; but in truth, economics has never been value-free, it has only fooled itself that it could be so. I’m really glad that Reddy is contributing to a better understanding of economics as value-entangled. Can’t wait to read the result of his INET project, “a book making a broad case for the resurrection of normative reasoning in economics”.

I haven’t been following the coalition negotiations in detail, so mainly want to open up space for those of you who want to discuss whatever you want to discuss regarding the new coalition. Just three brief observations below the fold.

First, the austerity measures that have been haunting many other European countries, had in Belgium not yet been politically decided upon, let alone executed, since after the elections the outgoing government is not legitimized to make such decisions. So the wave of social protest that we have seen in neighbouring countries over the last year can now be expected in Belgium (soon after the outlines of the coalition agreement became public, the first protest was organized). Belgium is a close runner-up to the Euro-countries that are in Real Trouble, so if the government wants to lower the interest rate on its debt, it will have to do something about the trust the financial markets have. In the meantime, the outgoing prime minister did something which seems quite smart: he strategically used the difference between the (relatively low) interest rates which savers get for their money and the (high) interest rates the government has to pay to refinance its debt on the international markets, by collecting money domestically with the Belgian households (who have significant savings: the Belgian state is not rich, but many of the people have lots of savings). Shouldn’t that be a strategy that more Euro-countries in trouble can use?

Second, while this government has kept out the nationalist parties, and in that sense the tensions between the Francophones and Dutch-speaking politicians should not weigh too much on the political agenda, there is at the symbolic (and the practical??) level a black spot, since the prime minister, Elio di Rupo, speaks rather poorly Dutch. Several Flemish politicians (and not only the Flemish nationalists) have expressed concern how a prime minister of such a divided country can do his job well if he can’t effectively communicate in the language of 55-60% of the population. My personal view on this is very simple: In general, all jobs come with requirements, and it seems to me an eminently reasonable requirement that any minister of the Belgian federal government, but most definitely the prime-minister, should have a functional (though by no means perfect) command of Dutch, French and English. Whether or not di Rupo meets that criterion, is for the future to show us. In any case he has promised to improve his Dutch, and asked for patience.

Third, di Rupo is gay, and openly gay. As far as I know, nobody makes a big deal about that. It doesn’t seem to play any role whatsoever (correct me if I’m wrong). I think this is fantastic. That’s just how it should be: not an issue.

In any case, the big news for today is that Belgium FINALLY has a government. For the time being, the language quibbles and the social protests can’t spoil the feeling of relief that surely many Belgians must feel.

A religiously-inspired progressively-leaning magazine is starting a new series, namely asking people which book “provides support, or is a book to which one often returns”. And the answer cannot be the Bible. I actually don’t think I can answer this question. Most fiction, with very few exceptions, I’ve only read once. Non-fiction I read is either informative (like King Leopold’s Ghost, or Joris Luyendijk’s book on the Middle East), or else it is scholarly, but then I don’t think I see it as providing (moral) support or as an inspirational book. Of course, I’ve opened A Theory of Justice or Inequality Reexamined or Justice, Gender and the Family many times, but that’s mostly because I want to return to the arguments to examine them. Moreover, most of the (non-professional) reading I do is on blogs and the internet.

So what, if anything, could be similar to an atheist as the Bible is to a Christian? I really don’t know. But if I’m forced to give an answer, I would say: I prefer talking to people over reading books if I need (moral) guidance or support, and if I need inspiration or some distance and non-analytical reflection, I turn to poetry. I still have, ripped from a student’s magazine when I was studying in Göttingen in 1994/5, a page with a Poem written by Nazim Hikmet, translated in German – a poem to which I have returned many, many times:

Leben
einzeln und frei
wie ein Baum
und brüderlich
wie ein Wald
ist unsere Sehnsucht.

So give me poetry and people if I need inspiration or support. And you?

Two related things perhaps worth mentioning.
First, in the Netherlands a very interesting initiative started a few weeks ago (independent of Occupy Wall Street, but obviously not independent of the same global problems in the financial sector): the Sustainable Finance Lab. It’s an initiative by an eclectic group of academics, mostly economists (some more mainstream, some more heterodox), and one small ‘green’ bank (Triodos), to bring together people interests in debating what the real problems are with the financial sector and what needs to be changed. So far there have been 2 meetings (last Monday and the Monday before), which were 4 times oversubscribed according to the organizers. I’ve attended both meetings and it’s been very, very interesting – in fact, on issues of economics I haven’t seen anything as interesting so close to home for a long time, and that’s probably because people who normally don’t speak to each other are sitting in the same room and sharing their views. Bankers, academics, students, ex-investment bankers, journalists—they all share their views in a respectful atmosphere, but it’s clear they do not quite have the same perception of how urgent change is needed, and indeed what type of change is needed, or what the causes of the problems are. I’ll try to remember posting something about the Sustainable Finance Lab after the first series of meetings is over (end of this year), but in the meantime, for those of you who understand Dutch, you can read my analysis (criticism) of the first two meetings here. I’d be interested to hear if any similar initiatives have been taken in other countries.

Second, both the debates at the Sustainable Finance Lab (where some of the self-criticism by some economists gives me a strong, but also somewhat ironic, déjà-vu feeling), and the article ‘Economics has met the enemy and it is economics‘, published in The Globe and Mail last weekend, remind me so much of the debate we had as economics grad students on the relation of economics with the economy and the rest of the world. If you think there is something deeply wrong with the economic system (or at least some aspects/sectors of it), you just cannot not pose the question whether there is also something wrong with the discipline that studies, influences, shapes and to some extent legitimizes that system (not necessarily in that order). Whole generations of economists, including me, have been educated with the clear message (dogma, if you want): There Is No Alternative. At best, you can tinker at little at the margins. So I couldn’t help wondering: now that the people are on the streets, will a new generation of young economists, who haven’t given up on the discipline yet, stand up and demand it to change so as to make sure it serves the people’s true needs, all people equally, including those who have yet to be born? Will they organize ‘Occupy Economics’?

The last months were filled with one attempt after the other to find a coalition, all in a climate of the absence of trust between the two main linguistic groups, and also in what I’d call the ‘bad-divorce-atmosphere’. With that latter I mean that if one listens to the interpretation or explanation of a certain event by either the Flemish or the Francophones, it is just like listening to two spouses in the middle of a very ugly divorce: it is as if they live in two completely different realities. This, in fact, is probably the factor that makes me most pessimistic regarding the odds that the two linguistic groups will stay in the same country in the long run: just like a bad marriage, they no longer have enough valuable things in common, and their common past may no longer be enough to keep them together.

So now, in this mess, another event was just announced that may cause Belgium to sink even deeper: Yves Leterme, the Christian-Democratic former Prime-Minister, who has been been running the daily affairs for the last 15 months waiting to be succeeded by the new PM, has announced that he is moving to the office of the OECD.
Together with his team, he has been taking care of daily affairs in Belgium, in very difficult economic times, and I believe the general judgement is that he did so quite well, especially given the difficult circumstances.

I see two possible scenarios. Either his exit is the pressure that breaks the bowl, the negotiations which are not going anywhere stop, and we go for new elections or yet another new set of parties negotiation (but haven’t we had almost all possible combinations by now?). Or the negotiating parties understand how precarious the situation now is, and this gives them a reason to find the compromise that they have had such a hard time finding over the last 15 months. Either way, the departure of Leterme is a shock to the political class, and we’ll have to see in the mid-long term whether it will turn out a good thing or not. In the short term, it definitely is only adding another problem on the existing heap of problems.