autism

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.

Since my older son was diagnosed with an autism spectrum disorder (ASD) at age 3, I read many books on autism. From those books I learnt that the chance that a sibling would also have/develop an ASD was about 5%, compared with the 1% chance for anyone in the population (that is, about 1% of children are officially diagnosed with autism, but I think one can seriously doubt whether that figure is not an underestimation due to under-diagnosis).

I always thought that this 5% figure was odd, since it didn’t correspond at all to my observation at the special-needs-daycare/school of my son or in online parent support groups or in accounts of families affected by ASDs that I read, where many parents report to have several children with an ASD. I noticed just way too many children who also had siblings with an ASD to make that figure of 5% correspond to reality. And now, there’s a study just published in Pediatrics, confirming my observation: if a parent has a child with autism, the chance of a sibling also developing an ASD is almost 20%. That’s what the authors found in a large American sample, and I don’t see any reason why it would be different for other parts of the world.

Not sure how that will change the way we look at autism (if it will make any difference at all), but I find it a striking (but not surprising) figure.

Laura at 11D

bq. Our next IEP is a big one. Every four years, a child must be tested in a variety of ways. We met back in August to discuss which tests would need to be done on Ian. He was tested for speech, IQ, educational levels, and audio-processing. He went through his first battery of tests back when he was four, so it will interesting to see how far he’s progressed. So, why is an IEP a game of chess? Because I want Ian to receive more therapy and the school district wants him to have less. … Every school district assigns a case worker to supervise your child. Their stated mission is to represent the interests of the child. However, the real mission of the case worker is to limit the amount of money that a school district spends on the child.

bq. He needed to be in a specialized school that had experienced teachers and ABA specialists. Instead, he went to a half-day program in our school with a general special ed teacher, who had no idea of how to work with him. The school district wanted to keep him there, because it was cheaper than sending him to a full day program in another district. They knew that he needed extra help. They discouraged me from going to a neurologist, who would have given us that very important diagnosis. When I was in distress about his education, they told me to stop worrying and get a manicure.

bq. We have a superintendent who gets up in public forums and announces that we are one autistic child away from blowing the budget. Town council members have said in public sessions that we can’t build any more houses in our town, because a family might move in with an autistic child and it will cost us $100,000. During our recent town budget crisis, another case manager in our town said that our expenses are so high, because we pay our therapists too much money. There is a witch-hunt atmosphere around special ed students.

bq. … So, I will enter a conference room in the next few weeks with a carefully arranged speech and specific demands. If Ian needs five hours of after school therapy, I’ll ask for ten. Maybe we’ll get three hours, if we’re lucky.

7854 posts in CT’s history, and virtually none written on autism. I think we are missing an opportunity here, to talk about something most people have no clue about, while chances are real that they have non-diagnosed people with autism in their families, neighbourhoods or professional circles. April 2nd was International Autism Awareness day, but since I was leaving that day for a family holiday, the post that I wanted to write arrives only now.
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My son’s language is made of a bundle of sounds that do not exist in the Spanish that we speak around the Río de la Plata. He repeats syllables he himself invented, he alternates them with onomatopoeias, guttural sounds, and high-pitched shouts. It is an expressive, singing language. I wrote this on Twitter at 6:30 in the morning on a Thursday because Galileo woke me up at 5:30. He does this, madruga (there is no word for “madrugar”, “waking up early in the morning” in English, I want to know why). As I look after him, I open a Word document in my computer. I write a little while I hear “aiuuuh shíii shíiii prrrrrr boio boio seeehhh” and then some whispers, all this accompanied with his rhythmic stimming of patting himself on the chest or drumming on the walls and tables around the house.
My life with Gali goes by like this, between scenes like this one and the passionate kisses and hugs he gives me. This morning everything else is quiet. He brings me an apple for me to cut it for him in four segments. He likes the skin and gnaws the rest, leaving pieces of apples with his bitemarks all around the house. He also brings me a box of rice cookies he doesn’t know how to open. Then he eats them jumping on my bed. He leaves a trace of crumbles. Galileo inhabits the world by leaving evidence of his existence, of his habits, of his way of being in the world.
When we started walking the uncertain road to diagnosis, someone next of kin who is a children’s psychologist with a sort of specialisation in autism informally assessed him. She ruled (diagnosed, prognosed) that he wasn’t autistic, that we shouldn’t ask for the official disability certificate (because “labels” are wrong, she held), and that he should go on Lacanian therapy and music therapy on Zoom —now I think this is a ready-made sentence she just gives in general to anyone.

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When we renewed our roster of bloggers a little while ago, I mentioned that there would be more announcements to come. Today I’m very happy to say that Macarena Marey will be joining us at Crooked Timber. I met Macarena a few years ago at a workshop in Bayreuth and was immediately impressed by her combination of rigorous scholarship (there mainly on Kant’s poltical philosophy) with passionate commitment. Macarena was born in a little city by the sea in the Argentinian province of Buenos Aires. She’s been living in the city of Buenos Aires since she was 4, so one could say that she is “porteña”. She is a Researcher at CONICET (the National Scientific and Technical Research Council for Argentina) and Lecturer in Political Philosophy at the University of Buenos Aires as well as being director of the Centre for Critical Studies and Philosophy of the Present at the Institute of Philosophy, Faculty of Philosophy and Literature, UBA. She is currently working on problems of political participation and on the work of the first American Marxist, José Carlos Mariátegui. She is the mother of Elías (10) and Galileo (3). Galileo is currently helping her learn a lot about ableism and how to fight it by unmasking autism, while Elías teaches her all about the science of engines in general and Formula 1 in particular. We look forward to reading what Macarena has to say!

I have been researching around ADHD fairly actively for family reasons in the last year or so, and the Youtube algorithm has hence decided that I must be interested in neurodivergence more broadly. So, thanks to it, I have recently discovered two excellent channels on autism with lots of instructive and nuanced videos – Autism From the Inside by Paul Micallef and Yo Samdy Sam by Samantha Stein (I know, here we go again: isn’t it adorable how it’s 2022 and I have just discovered Youtube content creators?). That, and two insightful conversations I have recently had, got me thinking about the concept of autistic masking. [click to continue…]

I decided to dedicate two separate posts to books, this one is for fiction. I usually don’t read much fiction so last year I wouldn’t have had enough to write about for such a post (and what I did read I didn’t like so wouldn’t have wanted to write about it). I still don’t have that much, the hope is that you’ll add your own. Like last year, this is not about books that were published in 2020, I am just sharing what I read in 2020 and recommend.

My big reading innovation this year, by the way, was listening to audiobooks. It helped me read more since I can still follow along comfortably at 1.5x speed, often even 1.75x or 2x speed, which is definitely faster than I read. Importantly, it lets me multitask so I can make progress on a book while cooking or working on a jigsaw puzzle (one of my pandemic sanity preoccupations although some of you may recall that this wasn’t a pandemic novelty for me).

This book is definitely not new, it’s even been made into a movie already (I haven’t seen it), but I only came across it this year: Still Alice by Lisa Genova (2007). It’s a tough topic, early onset Alzheimer’s in an academic. It’s beautifully written and the best fictional depiction of academia I have seen (but again, to be fair, I don’t see that much fiction). It did make me rather paranoid, but following up on the book I also read about things one can do to help delay onset (FWIW, solving crossword puzzles is not one of them).

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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…]