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:
And that book is Mark Haddon’s the curious incident of the dog in the night-time. It’s from 2003, but that’s no reason to not recommend it. It’s a wonderful novel of a boy with autism living with his father (with flashbacks to periods in his life when his parents still lived together), who looks at the world in his own way, highly logical and with a strong sense of justice. From his perspective, neurotypical people are often behaving strangely and inconsistently and are violating their own rules – and well, lets face it, they do, don’t they? I surely haven’t read as many books on autism as some of the commenters/readers of CT have, but of those that I read, I found this book one of the most enlightening narrative about what autism means (at least, for the subgroup of people with autism that I know from real life; those who are very severely disabled and have a combination of autism with cognitive disabilities do not enter my life frequently on an intensive basis, and somehow I have the impression they are also less likely to be written about in books).
There’s only one warning, which needs repeating, especially on a day like today: if you have met one person with autism, you’ve met one person with autism. The same holds for novels/autobiographies of people with autism: if you have read one novel/(auto-)biography of a person with autism, you have learnt something about one person’s autism. Autism manifests itself very differently in people, and whichever book one reads will never give a full description of ‘autism’ in general. Science books may do (since they are explaining us what autism is at a higher level of abstraction), but in my experience it’s very hard for science to convey what it really is to live a life with autism. The narrative method is much more powerful for this than any scientific method. Anyone who has read something good on autism (new or older): the floor is yours.
{ 15 comments }
Fred Cairns 04.02.13 at 10:44 am
Perhaps it’s not the best comparison, but Temple Grandin’s “Thinking in Pictures” is an excellent read and a good autobiography (although I trust the woman has a few years to go yet!). This is a person with Aspergers Syndrome (or, High-Functioning Autism) so it isn’t as severe or as debilitating as conditions can be with autism. My son has the condition, and naturally he has friends with the same condition, and it manifests differently with each individual.
withneedle 04.02.13 at 3:20 pm
Michelle Sagara’s LJ entries about her ASD son as a child were very educational for me: http://msagara.livejournal.com/tag/asperger%20child.
One of the secondary characters in her YA novel _Silence_ also has ASD; she wrote an essay about how that character entered the book: http://whatever.scalzi.com/2012/05/18/the-big-idea-michelle-sagara/
Pseudonymous McGee 04.02.13 at 5:54 pm
Kind of a tangent here, but I’d be interested to hear of good reads with characters who would now be recognized as ASD, written before the disorder was as recognized as it now is. It’s been a long time (not long enough) since I read Catcher in the Rye, but perhaps Holden Caulfield could be such an example. I hasten to add a pre-emptive apology in case that is wide off the mark and I’m just lumping ASD in with insufferable teenaged assh*lery.
memoria technica 04.02.13 at 7:53 pm
I highly recommend Elizabeth Moon’s The Speed of Dark. (context: I’m a software developer, and received a diagnosis of “atypical autism†[equivalent to US “PDD-NOSâ€] in my 50s.)
Sam 04.02.13 at 8:04 pm
Originally published in 1967, Clara Park’s The Siege chronicles her struggle to understand her daughter’s condition before autism was really understood:
http://www.amazon.com/The-Siege-Familys-Journey-Autistic/dp/0316690694
Daniel S. Goldberg 04.03.13 at 3:24 am
I’m sure someone may have posted on it in an earlier thread, but I’ve always found Amanda Baggs’s short video “In My Language” powerful and illuminating.
http://www.youtube.com/watch?v=JnylM1hI2jc
We’ve actually used the latter with medical students at my institution.
Chris 04.03.13 at 6:42 am
I’ve had experience with autism from not only the perspective of a person with a form of Autism (Asperger’s Syndrome), but also as a teacher who has worked with autistic children. Personally I have a lot of conflicting sentiments on the subject. On the one hand, it’s kind of wonderful to be able to get yourself so wrapped up into something, as will happen with the hyper focus and repetitive behavior that’s such a very big part of ASD. But on the other hand I could never enunciate my thoughts on something quite as clearly as other people around me, and often found that I’d offended somebody for reasons that came across as arbitrary. I found it very frustrating to be told that I had a personal defect which inhibited my ability to empathize with people around you when all those people seem unable or unwilling to empathize with me. But then again, adjusting ourselves to get along with other people is just something we all have to do on some level or another.
And so on, I could go on all day about it. I’m glad the issues becoming a little more open to discussion, though sometimes i’m a little distraught by the direction that discussion often takes. The truth is though that the conversation has been dominated largely by non-autistic who take it on themselves to define the group. It’s only been recently that autistic people have gotten much of an opportunity to speak for themselves on the matter. That’s not malicious, I don’t think, but it does kind of undermine our understanding of the matter.
Chris 04.03.13 at 7:03 am
Adding on to the earlier post, Wrong Planet (an online community for people with Autism) has a list of books. It should be noted that the website tends to represent the views of people with high function autism and Asperger’s Syndrome more than anyone else, so there’s a pronounced “anti-cure” bias.
http://www.wrongplanet.net/books.html
Ingrid Robeyns 04.03.13 at 7:09 am
has anyone ever read accounts/novels/studies of people with ASD who did not know they had ASD (were not diagnosed,) and what the implications were?
I’m asking since in my corner of the woods much of the popular discourse is about overdiagnosis (another piece in a major Dutch newspaper on Monday that there are too many people who receive the diagnosis Asperger’s (and ADHD)). Overdiagnoses is seen to be a bad thing for the people involved (since they are ‘labeled’ and there is a focus on what they can not do, rather on their abilities), and also a drain on scarce resources. But I hardly ever (in fact: never) read a piece in the popular media on what it means for someone with ASD to not have a diagnosis (and also not to receive help, but there is of course no perfect correlation between those two situations). My hunch from the few cases I know and from talking to mental health professionals is that people who have ASD but were it is not recognised can suffer a lot. If anyone knows of literature (fiction, faction, research), do post! :-)
Kevin McDonough 04.03.13 at 12:34 pm
I would highly recommend Michael Berube’s essay ‘Narrative and Intellectual Disability’ in ‘Companion to American Literary Studies’ (Blackwell’s, 2010), for a couple of reasons. First, it is a really good source of examples of novels, stories and literary criticism related to ASD and other kinds of intellectual disability– in particular two novels with adult autistic narrators: Elizabeth Moon’s The Speed of Dark and Philip K. Dick’s ‘Martian time-slip’. Second, it usefully glosses over the distinction made in Ingrid’s OP between autism and cognitive disability.
One of Berube’s main points in the essay is that ‘disabled narratives’ can serve as a means of challenging what he calls ‘the reification of intelligence’ and the attempts to derive social policy from that reification . As the parent of a child diagnosed with pdd-nos (often a euphemism for what used to be called mental retardation but also a label that is often attached to folks with ASD) I have noticed that there is (an increasing?) tendency in popular discourse about autism to distinguish between Autism (i.e. Asperger’s) and cognitive disability (‘low functioning’ ). I suspect that behind this distinction is often something like the reification of intelligence to which Berube refers– Autism thus comes to denote those who have ‘normal’ or higher intelligence but who have difficulties communicating or relating to others with similar levels of intelligence, while cognitive disability denotes those with an entirely different condition. But Berube’s idea of ‘disabled narratives’ highlights a way of reading fictional accounts of disability – of textualizing ‘disabled narratives’ – so that they provide us with a window into human perspectives that do not fit so neatly into this distinction between autism and cognitive disability.
Daniel S. Goldberg 04.03.13 at 2:45 pm
Ingrid,
I cannot speak to your specific question, but there is a lot of very good literature on the awesome meaning-making power of diagnosis, and the ways in which this power can both benefit and harm illness sufferers.
The best essay on this I have read is Charles Rosenberg’s masterpiece, “The Tyranny of Diagnosis.” The fact that Professor Rosenberg has written quite a bit about the history of psychiatry and mental health may add to the applicability of the piece for issues of ASD. Link: http://www.jstor.org/stable/3350536
Kevin McDonough 04.03.13 at 2:58 pm
Just to add to Daniel Goldberg’s suggestion above: Ray McDermott, “The acquisition of a Child by a Learning Disability” is really superb though a bit old (1993) now.
ragweed 04.03.13 at 4:37 pm
@Kevin McDonough (10) – I think the tendancy to equate autism with high-function, as opposed to cognative disability, is actually a residual of a much older view of autism. When autism first really started to enter the public conscience in the 80s, popular depictions were dominated by autistic savants – high-functioning autism combined with some sort of genius-level ability, usually in math or music (Rain Man, etc.). People who worked with autism at the time – this was before widespread diagnosis of aspergers – were quick to point out that the vast majority of people with autism also had significant cognitive impairment.
So I suspect that the current narrative is a dovetailing of Aspergers awareness with old narratives of autistic-savants. None of this is counter to what Berube is referring to – in many ways it exemplifies the reification of intellegence in that the past narratives focused so exclusively on one small segment of the population that could be seen as having normal or high intellegence.
StataTheLeft 04.03.13 at 8:01 pm
Here are some favorite links:
http://web.archive.org/web/20070806105132/web.syr.edu/~jisincla/dontmourn.htm
http://web.archive.org/web/20070715055110/web.syr.edu/~jisincla/person_first.htm
http://www.autreat.com/History_of_ANI.html
Josh Lukin 04.06.13 at 6:54 am
Courtesy of SUNY-Buffalo’s Joseph Valente, I’d posit Stevie in Conrad’s The Secret Agent as a representation of an autistic person avant-le-lettre.
Choldenko’s Al Capone Does My Shirts is reputed to be very good too.
Comments on this entry are closed.