Autism

So this article (Autistic Sex Offenders Often Don’t Realize They’ve Broken The Law. Should That Matter?) was on the front page of Slate yesterday, and I thought, “this is so Slatepitchy that I should blog about it! Tomorrow though, because the Investigation and Discovery channel has it’s 4,000th show in a row about some brutal murder in Indiana, which I must watch, and also my mania requires me to clean the side of the stove that’s 1/2″ away from the kitchen counter, by forcing paper towel soaked in bleach spray down there with a boning knife and really leaning into it, and also I’m fundamentally a failure as a human being and can’t accomplish the most trivial of tasks.” (To be scrupulously fair, when I was nearing the end of the stove thing I said to myself, “self? Self old buddy old pal old frienderoo? Maybe just put the knife down and back away, because by the pricking of my thumbs, you’re going to be going at something with Q-tips any time now, and it’s already midnight.” (Ironically, this would have been good advice for the murderer as well.) “Also, if you’re so obsessive about these things, why isn’t the house cleaner generally? Could it be that you’re a failure as a human being?” And then I went to sleep lmao I had insomnia.

However, comma, I’m blogging about it now, better late than never, my life is a long series tasks before which I quail in needless fear as if they were copperheads looking at me with their glittering eyes, etc. This article has passed beyond #slatepitch to genuinely disturbing. And this is the reason that they took it off the front page altogether, and it can now only be found using google. [Update: I clicked on an article and this appeared in the sidebar. It was definitely not on the front page this morning.] The premise is that autistic people should get preferential treatment when they commit sex offenses such as stalking or possessing child pornography, because they don’t really know what they are doing. It’s as insulting to autistic people, really, as it is to common sense and basic morality.
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April 2nd is World Autism Awareness Day, and I’m trying generally to post something on this topic around this time of the year. (NB: I’ll use “autistic people” and “people with autism” interchangeably, since members of the autistic community are divided on which of these terms they prefer – and in my view, both sides have good arguments to prefer it they way they prefer.)

First, we’ve been talking here in the past about the importance of listening to the voices of people with autism (something that Pete Warmby argues is lacking in the Autism Awareness week). There is a very simple and accessible way of doing that – and that is via Twitter – just type “#actuallyautistic” in the search field. The tweets with the hashtag #actuallyautistic will sometimes include links to blogs on which much lengthier pieces can be read. [click to continue…]

Here’s an important article by Aiyana Bailin, who argues that the recent fidget spinning fad shows something disturbingly:

Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people

So here we see disability discrimination at work. For some neuro-atypical and disabled people, stimming is a way to reduce stress, and indeed also to concentrate better. But often they are told not to do this. The same holds for other forms of behaviour that neurotypicals consider ‘abnormal’. The fidget spinning just shows how much of a social convention, and hence form of domination, those social norms regarding ‘normal behaviour’ are, and that at least some of those conventions are biased against the needs of some groups of disabled people and neuro-atypicals.

Earlier this week, I came across another example. A therapist told me that social skills training for autistics entails, among other things, that they learn to look at the eyes of another person when talking to them. But why would that be a desirable good? What, except for some social convention, would make it that it is considered inappropriate not to look at the person you’re talking to? Why can’t we just accept it to be as it is – that for some people, it’s easier to have a conversation if they do not have to look you into the eyes?

But the good news is that the article by Aiyana Bailin gives us an opportunity to learn something. I suspect it will eye-opening to many of us. It’s an example of how disability discrimination works, and examples may well be more effective in showing the working of disability discrimination than some abstract theory. Yet it’s an example of a more general problem that Bailin wants to draw our attention to:

But the power structure is still there. There’s still a rigid hierarchy of who gets to decide which behaviors are normal or pathological. There’s still a societal subtext that tells people who are different “be less like yourself and more like us.” We need to work on that.

It’s World Autism Awareness Day (WAAD). The Independent has a very accessible piece debunking 5 myths regarding autistic people; it takes only two minutes to read. The piece also reports that in the UK 87% of people living with autism think the public has a bad understanding of the condition.

While my family has also come across a lot of ignorance over the years – some of which hurt badly – there are also wonderful strangers who have restored faith in what is possible. So, I want to dedicate a post to those people who are reaching out to people with autism, and tell them how important it is what they do.
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April 2nd is World Autism Awareness Day, a day when we are called upon to raise awareness of autism. I have been working in the last months on a paper on how to [philosophically] conceptualize the well-being of people with autism/autistic people*, but alas, that project is not finished yet. But if you’re interested in new philosophical work on autism, check out this book that Jami L. Anderson and Simon Cushing edited, which contains some interesting chapters. And check out this interesting blog post by Richard Ashcroft, on a workshop that Raffaele Rodogno organized last year, which was absolutely fascinating for the reasons that Richard spells out.

I want to raise two issues: one about the diversity of people with autism, and the possible epistemological consequences. [click to continue…]

A colleague who lost his teenage son due to a traffic accident 3 years ago, told us about the ‘black halo’ which remains above his head, and which only others who have lost a child are able to see. I do not doubt for a second that this is the case – that people who have not lost a child are, perhaps a very few exceptions aside, not able to truly understand what it means to lose a child, and how it changes the person you are. It reminds me of a friend who lost her father about a year after I lost mine. She had been very supportive when my father was terminally ill and died, but told me after her father died that she had no idea how hard it was until she experienced it herself. Good intentions are simply not enough to understand certain experiences.

I think it’s not just with experiences, but also with varieties of ‘differences’ and with social practices, being ill, and other features of human life. It is not just the death of someone near and dear that we have a hard time to understand if we haven’t experienced it ourselves; or what it means to have autism, or to live with and/or care for someone who has autism (in my experience, most people don’t understand, despite what they believe themselves about their understanding); or what it is to be constantly subjected to racism. I am confident that I have no clue what it means to grow up in abject poverty, or to live through a civil war, or to be the victim of domestic abuse.

My worry is that this category of experiences, differences, practices, and other features of human life that we cannot understand without first-person experience, is much larger than we generally tend to assume. And that as a consequence, we believe that we know much more than we actually do know. And, as a further consequence, that we too often are wrong in our judgements of aspects of the lives of people significantly different than ourselves.

Somehow it strikes me as wise, and possibly even as a precondition for social justice, if we would rehabilitate epistemic humility at the core of our educational and social practices.

Recently I read the book The Reason I Jump: One Boy’s Voice from the Silence of Autism. This is a very unusual book, for both its content and its format. The writer, Naoki Higashida, wrote this book when he was 13. It consists of 58 questions and answers that give a picture of autism from the inside – and this time not from one of the few people with autism who are also verbally strong (often people with Asperger’s), but written by a boy who has sever communication problems. He wrote the book using an alphabet grid; a helper can then transcribe what he wants to tell us.

Naoki gives answers to questions such as “Why do you echo questions back at the asker?” or “Why do you take ages to answer questions?” or “Why don’t you make eye contact when you’re talking?” – and the question that gave the book it’s title “What’s the reason you jump?”. The answers are highly interesting and revelatory of the autistic mind – at least, of one autistic mind. It takes ages to answer a question because “by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads … and all the while, we’re being bombarded by yet more questions. I end up thinking, this is just hopeless. It’s as if I’m drowning in a flood of words.” [his italics]. And the reason he jumps? “When something happens that affects me emotionally, my body seizes up as if struck by lightening. … it means I am not free to move the way I want.” [click to continue…]

It’s the annual World Autism Awareness Day. Last year, Twitter provided an excellent source of links and information through #WAAD – so check out Twitter later today if you are interested. I’d like to use the occasion to put in a plug for an old book, a classic indeed, that I only read last Summer, but that should be on anyone’s reading list who wants to enter the world of people with autism:
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Following up on the last post on Autism, one important way to get some glimpses, or some partial sense, of what it can be to living with autism, are movies. If you ask the vast majority of people whether they have every seen a movie on autism, I suspect they will say they’ve seen Rain Man. I haven’t seen this movie for many years, so shouldn’t talk about it in detail, but what I can say is that it so much skewed my understanding of autism that I wonder whether it may have been better if I had not seen this movie at all. I have, by now, met many people with autism, but not a single one that resembles Rain Man. Yet it does point to a much more general issue, which is that given how radically different people with autism can be, one single portrait of a person with autism will inevitably lead to a very limited understanding of what autism is. But except if one were to make a movie on an organization (a school, or a company) that has many members who have autism, I don’t see a way around this problem.

So, here are two other movies I’ve seen recently, that I’d like to mention for different reasons.
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I have recently become more and more interested in the relevance of an epistemological question for its consequences for social and political philosophy, namely: To what extent are certain types of knowledge only accessible to those who have had certain experiences? And how do one’s values, judgements, etc. change (or not) after having lived through certain experiences? Intuitively, it seems so obvious to me that some sorts of knowledge (or perhaps ‘understanding’ is a better word?) cannot, or can only in an extremely difficult way, be reached without having had certain relevant experiences. We can all think of concrete examples in our own lives (e.g. how one’s views on death and sorrow change if for the first time one loses a very dear loved one; how views on human vulnerability change if one becomes a parent etc). But this also holds for knowledge/understanding of less personal and more social/political issues. For example, my colleague Constanze Binder once lived with Indigenous women in Oaxaca in Mexico, and recently wrote a short piece about how their practice to switch roles between men and women one day a year (on international women’s day) has lead to most progress in the fulfillment of their demands. Understanding can be an important factor in creating willingness to chance.

How does this question of knowing and understanding applies to autism?
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Today is World Autism Awareness Day. Autism manifests itself in many different ways, and it is a saying that each person with autism is not only different (we are all different!) but rather experience autism differently, and has different aspects of autism which affect him or her. In this series of post around Autism, I do not just want to discuss issues around autism from a third-person perspective (like the over-diagnosis question, or new scientific advances, or new books we’ve discovered), but also give the floor to those who live with autism, or those caring for & working with people with autism. I’d like to ask one question: What are the most important changes which you’d want to see related to autism, given your life and the context in which you operate? My (very particular and context-depedent) answer to this question is below the fold.

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.
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In this first of a series of post on autism, I want to talk about the blaming of parents and teachers which has been going on in the Netherlands for a while. It’s not the most uplifting post of what I am planning to write over the next week, but I think it nicely illustrates why we need this Autism Awareness week in the first place. One of the things that I’m curious to find out is whether this is a particular Dutch phenomenon – I fear not, but don’t know. [click to continue…]

Monday April 2nd is World Autism Awareness Day. Yet in the Netherlands (and I suspect other countries as well), today starts the ‘Autismeweek’ (no translation needed!) – a full week in which people who care about people with autism (which includes people with autism as well!) try to put autism in the spotlights, raise awareness, inform the wider public, and speak up or speak out.

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.

We exist. That’s the subtitle of a new blog, Disabled Philosophers, a blog which wants to make disabled philosophers more visible. I think this is a great thing to do. Do have a look, and if you feel you fit the description of a disabled philosopher, or a philosopher who cares for/shares their live with a disabled person, do consider submitting your description. I think bringing this out in the open will do a great service to all those who are struggling with these issues, or those who want to know more. In fact, I think a blog like this makes academia (and, by extension, the world) a little bit more humane, since it shows people as they are, not as we imagine them to be.