Amazing article on Asperger’s Syndrome
From the British Psychological Society’s blog, I found this study on Asperger’s Syndrome. I can’t urge you enough to go read it, especially if you have a child, or spouse, or friend, or co-worker, who might be on the spectrum.
It’s a sociological paper, and it can get a bit dense with Giddens and Goffman and Mead, but don’t let that dissuade you if you’re not the scholarly type. The study was based on interviews with people who have Asperger’s, and it’s the deep attention to and sympathy with their experiences that really makes this special.
In particular, the paper is about the extent to which AS folks never get to the point at which social interaction can be done without a huge investment of thought and effort:
… what are commonly perceived to be small, mundane social norms can present as massively significant and difficult to overcome for people with AS [Asperger's Syndrome]. It is as though there are two, incommensurable universes where something mundane, small and taken for granted in mainstream life is an alien, challenging and uncomfortable act for people with AS. The problem is that for people with AS this tension represents the overwhelming majority of their interactions and experiences because they live in a neuro-typical world.
Participants suggest that typical others found it hard to understand how they felt or to make sense of their emotional detachment and yet participants felt enormous pressure to try to reduce such differences, make sense of the social world and try to fit in.
…
Furthermore, the inability to reach the stage of taken for grantedness meant that interactions remained conscious activity – ‘conscious work’ as Richard called it – a process that had limitations and was tiring, draining and constant.“You do learn strategies from an early age I think and the problem is with people probably on the spectrum is that you have got a lot of information that you need to store away because you have to remember the strategies for those situations [um] because it doesn’t come naturally so you have to pull that out of your little film cabinet that you have got in your head and play it quite quickly so you know what to do. It is not inherent really.” (Tim, aged 44)
I’ve read a ton of psychological research and theorizing about Asperger’s, and I’ve read plenty of Temple Grandin and The Curious Incident and all that, and yet somehow I feel this article is the first time I’ve actually grasped how frustrating and exhausting and just plain old unfair life as an Aspie must feel sometimes.
I often get questions from neurotypical people who are trying to cope with behavior from folks who have Aspie traits,* like this one. I was proud of my advice on that letter, particularly this: “I have talked to a lot of people like this, both in my ordinary life and through my column, and the last thing they want is subtle hints and good-natured ribbing. They don’t understand such modes of communication: That’s part of the problem. What they want are clear, highly specific behavioral guidelines and respect for their own sometimes-idiosyncratic needs.”
That was good, but of course the whole “Mind over Manners” credo is that highly specific behavioral guidelines are not enough for the modern world, that we have to be able to develop the competencies of improvisation, regaining our footing, negotiating, picking up on cues and adapting in the moment. That’s why it’s called mind over manners. It’s a fundamentally anti-Asperger’s orientation. And I don’t really know where to go with that, because I deeply believe that these are the skills we need in a complex social world. So where does that leave those who can’t learn them? What can etiquette do for them, and what etiquette do neurotypicals like me owe to those who can’t live life like an improv game?
Certainly, after reading this, I believe I will be much more patient with people who exhibit Aspie traits. To be honest, I’ve had my difficulties with such people in the past. From some folks–not all, but many–I’ve gotten a vibe of contempt for social norms and niceties: “Your pathetic social rituals are meaningless to me, puny human.” And, you know, I tend not to respond too well to that. But I wonder if maybe some people are, in fact, trying harder than I’ve given them credit for. I was moved to the point of being shaken at how hard some of the people quoted in this paper are trying.
And for those who really are treating social norms and the people who follow them with contempt? Well, if almost everyone in the world were going around insisting that something I couldn’t perceive is terribly terribly important, and I’m defective for missing it … I might start to have contempt for whatever it is they’re making such a big deal of, too. As a way of making myself feel better, and as a way of letting go and getting on with my life. In fact, knowing me, there’s about a thousand-percent chance that that’s exactly how I’d react.
So I’m sorry, folks-on-the-spectrum. I’ve given my fellow neurotypicals good advice about you, I think, but I’m not sure I give a lot of advice you can use. And maybe I haven’t always given you as fair a shake as I should have in my personal life.
If you have Asperger’s, or are close to someone who does, I’d be very interested to hear from you. Has learning the cut-and-dried rules of etiquette–manners over mind, as it were–helped you? Are you trying harder than people give you credit for? Would you prefer neurotypicals make more of an effort to see the world from your point of view, or would you rather, frankly, have us leave you in peace and stop trying to understand? Neurotypicals, what have you found to be helpful in your relationship with your AS child, or friend, or spouse?
*Invariably, when I run these questions, I’ll then get letters from readers saying “That person sounds like they have Asperger’s Syndrome! Why didn’t you think of that?” Chances are, I did. But I wouldn’t diagnose someone in a newspaper column based on nothing more than the description of a third party even if I were a clinical psychologist instead of a research one.
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Just by the way, what a brilliant description of a(n apparently) completely different topic, the ‘God debate.’
What do you mean, Carolyn? I’m confused.
Yes, learning cut-and-dried rules has been amazingly helpful because they provide a script – something to fall back on when the improv fails. I have NLD, which current research suggests is on the spectrum and a theater background — one of the reasons I loved theater as a kid/teenager was that lots of things were scripted, and so it made it easier to handle things that happened that weren’t scripted because they were fewer and farher between. It was a much more controlled environment than regular life to learn how to handle when things don’t go according to plan — even in improv games there are rules about how to improv (ie “yes and” which you mentioned in an earlier post).
What an interesting day for thoughts on Asperger’s! The Motherlode blog at the nytimes website by Lisa Belkin has two posts right now, one from a mother with an autistic child and one from an autistic adult. Thank you for sharing, Robin, even just reading the excerpt from this article makes the spectrum a tiny bit clearer. It’s all well and good to say “try and imagine being in someone else’s shoes” (which is what many people at the nytimes say) but it’s hard to know HOW to do that when they think differently from you to begin with. This helps me do that a little bit anyway.
Giddens and Goffman and Mead, oh my! Giddens and Goffman and Mead, oh my!
Um, sorry. Couldn’t help it.
I think Carolyn is referring to this sentence: “…if almost everyone in the world were going around insisting that something I couldn’t perceive is terribly terribly important, and I’m defective for missing it … I might start to have contempt for whatever it is they’re making such a big deal of, too.”
I can’t perceive God either, Carolyn. Does that make us entheo-atypical?
Hey, nice timing, I just watched “Autism: The Musical” last night, which was awesome and inspiring. I work on a weekly basis with kids on the spectrum, from very low-functioning to indistinguishable from neurotypical. I adore them and they drive me crazy. I was talking to one sweet young man and his mom this week, and I used the word “dayhab” to refer to another group of adults with serious developmental disabilities, and he jumped on me so fast…”THAT’S NOT NICE TO SAY!” His mom explained that “dayhab” is an accepted word, and not an insult and so on…but it was very cool that he had no shame about calling me out when he thought I was being mean. Go, H!
It’s a constant exercise in real diversity, working with kids on the spectrum, since what I do (farm) most of them find completely objectionable and bizarre – it’s dirty, it’s a *lot* of sensory stimulation, it’s not obviously efficient, and can’t be done on a computer or in a book. But their schools and parents bring them to me, so we have to figure out the relationship. It’s frustrating for me when I hear a kid (or adult) proclaim with utter conviction “No one does X, X does not make sense” when I’m doing X right in front of them and X is something I do every day. And if I point out that I’m doing X right now, it does.not.compute.
I’ve figured out a few of my own clues on how to communicate effectively, but would LOVE to hear more because I’m crushed with parents and schools that want to bring kids on the spectrum to my farm. I don’t have the option of not being good at handling communication! Like, what on earth am I supposed to do when a youngster stands around watching me weed and telling me loudly and endlessly how bizarre and insane I am for not using all the machines that could do the job so much better especially if they involved the youngster’s favorite obsession (often vaccuum cleaners or the subway). Mostly I just nod and smile and send them off to go fetch things for me, which is usually an enjoyable exercise for them. I figure being outdoors in a foreign environment is challenging and overwhelming enough. But it still is very emotionally exhuasting for me to have to listen to endless chatter for a couple of hours that has nothing to do with what’s physically happening…how can I encourage connection to the physical world gently? And what do I say when I just *can’t* listen to the chatter about the subway stations anymore?
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Oops, sorry, the part I copied in disappeared. I have wondered why some of my atheist friends sound so hostile to religion, and of course it’s because they’ve met a few too many people who feel sorry for them. That’s all just by the way, as I say.
Thank you, Jerry, that was it.
I love the way this post goes together with the previous one. The article suggests that many autistic people find _most_ other people as difficult as we find those particular few cases; if they have to work as hard to buy a pack of gum as I work to get along with the Not-evil-but-seem-to-enjoy-pretending-to-be in-laws, man, that’s a lot of work!
The reason I consider them difficult is that I sometimes can’t fathom what script they are working from–they may offer a joke where I was expecting a friendly remark, and I wind up trying to figure out what my next line was meant to be. Do they think I’ll think “Ha, what a card,” or are they waiting for me to get mad, so they can laugh at me for being oversensitive?
Someone in their circle said to me, at the last gathering, “Do you have to be so serious all the time?” to which I replied, “Yes, I do.” I now realize that may have sounded odd; what I meant was “I’m pretty sure I don’t understand the subtexts to that question, so here’s a literal answer.”
But that’s just one node of my social net–if I were that clueless about everybody, I’d be pretty scared.
Magicbean, I do NOT think you should be handling this situation on your own. Large numbers of autistic volunteers + untrained supervisor + farm implements … I don’t know, there’s something there that just doesn’t work for me.
Sorry, that was flippant–but there is a real issue there. Can you get facilitators from the schools to come and buffer between you and them? It seems both unwise and unfair to expect a person who’s had no training in managing/teaching autistic people to not only work with them, but introduce them to an extremely complex and multi-sensory set of tasks. Even if you can only get a facilitator/coach/psychologist out there for a day or two, they could teach you some real skills.
If you were just babysitting a kid in your neighborhood or something, that would be one thing. But the farming element makes it so complex that I think you’d benefit from expert advice.
Carolyn, Jerry–talk about having our own moments of feeling what it might be like … Yes, that was a nice analogy to religion, Carolyn. I like it a lot! Of course, originally, because the quote was left out, all I could see was that you were clearly making some kind of connection and I was supposed to “get” it … I could see that you were pointing, but not what you were pointing to. A brief flash of the frustration people on the spectrum must feel when neurotypicals use allusions and indirect communication.
Oh, that’s a given, glad you asked. Parents are always there, teachers from schools are required, it’s definitely not as if they just dump the poor kids and leave. Someone known and familiar with their skills and discomforts is always around. That helps us too, because I can ask the parent “Would it be better for your daughter if we did X or Y?”
I make sure to keep tasks very simple – harvesting or maybe using a hoe (tools are always FUN), and it’s OK to wander away or not focus…and some of the tricks I use are things like “Let’s pull out these weeds…describe to me this plant here and this plant here. Do you see a difference? How does that feel in your hand? It is very scratchy, that’s right. What else do you notice? What does that make you think of?” But that lasts about 10 minutes. Then it’s back to the subway.
Magicbean, forgive me for what I am about to say, because I do not know what I am talking about. I have no experience working with kids on the spectrum.
But a few things jumped out at me from your last paragraph, and both have to do with setting reasonable expectations. One, that 10 minutes might well be a very impressive time to have engaged kids obsessed with subways and vacuum cleaners in something entirely unlike their obsession. And two, that there simply may not be a way to avoid the subway for a lot longer than that. So I think you’re quite right to want to learn more about these kids and how they work, because I think maybe you need to both figure out what you can reasonably expect to accomplish, and figure out how to let go of whatever lies beyond that for your own piece of mind.
It sounds to me like you’ve been self-educating and feeling your way through a really complicated, interesting situation, and doing a fine job of it. I’m sure that all those parents and teachers are incredibly grateful to you for the thoughtful and considered interactions you bring to the kids. Go you, magicbean!
I love this post, and I loved the insights about people on the autism spectrum. But I think I loved Carolyn’s application of the “terribly terribly important” line to religion even more. Like Jerry, I can’t perceive god, but I have a new and fascinating way to think about both my own experience and that of people who apparently DO perceive such a being or beings.
Robin, there’s beginning to be more first-person Asperger’s writing available.
My favorite so far:
http://anygoodbooks-mixedreviews.blogspot.com/search/label/John%20Elder%20Robison
I decided to take Robin’s cue and flat-out ASK H’s mom what for any suggestions…and she was really, really happy to be asked!
Couple of things she said: “I find patience, flexibility, relationship and HUMOR to be most useful.” which is good advice for almost anything, but I was surprised by “relationship”. She said that anxiety is a huge factor for H, and having to work with just a couple of people really lets him ease that anxiety on his own terms.
MelissaJane, you are absolutely right. My trouble is that my ideals don’t intersect with my practicalities – I want to give H the space to wander and slowly work himself in, but I also don’t want to “ghettoize” him, and send him and his mom off on his own to do their thing and not be part of what we’re doing. But maybe they wouldn’t MIND be sent to do something independently as long as it fits with the parents’ goals for H. His mom writes that “Our goal is for H to gain work experience (and all that goes with that), build his confidence, strength, skill, stamina and ability to be more productive (as well as
appreciate his contribution to the community).”
Magicbean, I’m glad you had the conversation!
Carolyn, I saw that book in Montpelier and was tempted. I’d thought he was the same guy who wrote an essay in the New Yorker sometime in the past year or so, but I was wrong. That was Tim Page: http://www.newyorker.com/reporting/2007/08/20/070820fa_fact_page.
I’d recommend that, too.
Also flipped through Temple Grandin’s Animals Make Us Human which looks amazing. Although I cannot possibly take seriously the idea of putting Milo in a wooden box with a hole through which his head comes out and another, small hole into which I pour enough oats to fill the box and immobilize him.
I am willing to accept (but verify) that this relieves some dogs’ anxiety problems, Milo–no. Whatever it is he needs, it is not to be buried in oats.
Jerry, Carolyn, Melissa: Have you heard of ignosticism? http://en.wikipedia.org/wiki/Ignosticism
Thanks for the Page page, Robin–wonderful.
I had not heard of ignosticism. Among questions that _should_ be answered with a question, “Does God exist?” is certainly right up there!
Hi, Robin, thank you very much for this post. I chatted with you about this topic once in your Wednesday Boston Globe chat and I’m grateful that you are getting into this subject in depth. I’m NT. My boyfriend (in his 30s) has Asbergers. His beautiful, brilliant brain and his big, Owen Meany perpetually-outdoor voice get him (and me) in some really embarrassing situations. In social settings, when he is caught off guard or overwhelmed by what he considers to be an impossibly complicated social problem, he has blurted things out that have made my hair (and that of everyone else in the room) stand on end. But, you hit the nail on the head – most of the time he gets along just fine in his work and social life because he has impeccable – to the point of charming – manners. When I first complimented him on his manners and he told me that his parents happened to be very strict about table and social etiquette. He said that he is now very grateful for that childhood training because, although unnatural for him, knowing the etiquette rules has enabled him him to interact with others with relative comfort. I am not a psychologist, but based on what my BF has told me, I would strongly recommend that parents of children with Asbergers consider trying some serious manners training. It was an accidental but valuable gift for my boyfriend.
I remember that chat well, kmacjp! I know that in some recent memoir, a writer with Asperger’s also said that he had found etiquette books on his own, and that reading them helped him immensely.
Robin, thanks for remembering. If you ever remember the name of the book, I’d love to read it. Anything that will help me to understand Aspberger’s would be appreciated.
Awesome! I was an ignostic and didn’t even know it.
This is a very compassionate article, thank you.
I can’t speak for others, but I can tell you I did not feel contempt for social ritual or those who practiced it, I just didn’t understand the meaning, and so I asked “Why?”
I think etiquette training or something like that might very well be a good idea. The second paragraph here talks about Temple Grandin and etiquette
http://www.greendivamom.com/2009/07/26/temple-grandin-on-the-autism-experience/
There are many blogs written by people with AS, you might be interested to read some of them.
Thanks for that Grandin bit, Anon! Please, let me reiterate that I do NOT get this vibe from all people on the spectrum. And keep in mind I live in Cambridge, where there are plenty of people–spectrum and neurotypical alike–who think they are above others!
Yes, thank you, Anon!
As a person with AS, I really enjoyed this post and am thankful for your understanding. I didn’t find the article that thrilling, (but that is probably because none of it is news to me) but if it helps NTs be more understanding then that’s great.
Also, I am a regular reader of your column and blog because, even though you seem to think you don’t give out any concrete advice about social rules, a lot of your advice has been very helpful for me. You taught me that I should not wear black or white to a wedding, that I should eat everything my boyfriend’s family cooks for me, that I shouldn’t drink at office parties and that the appropriate response when a woman tells you she is pregnant is always “congratulations”. In addition, the letters and questions people send in serve as good examples for me of what not to do.
So, in my view at least, you have always been rather aspie-friendly (I can’t speak for all aspies of course). Thanks.
Shmeepod, thank you for reassuring me! (Although you don’t have to eat anything that you are allergic to or that you have an ethical problem with.)
Interesting. We study human behavior and turn it into a system, commit the rules to memory and refer to them in any given social situation, continually updating as we go.
Can you imagine the confusion when an NT does not play by the game established by their own rules?
The autistic spectrum is an introduction to a new way of thinking. It is practice for encountering an alien intelligence. So far the NeuroTypicals aren’t doing so well.
I have AS, but thanks to early intervention and behavioral therapy, I am now almost indistinguishable from an NT. Like others have said, learning etiquette in a clear, systematic way was one of the best ways for me to improve my socialization. When I was little, I had few friends because of my AS, so my parents bought me a book on manners that was written with pre-teens and teens in mind. As such, it was an engaging read, both because of how it was written and because of the fact that it laid out all these rules in a way I could understand and internalize.
Am I trying harder than people give me credit for? Quite so. I am a very pragmatic person, and the rules of etiquette often conflict with that pragmatism. Why mince words when telling someone exactly what I think (though it may be more frank than is considered polite) is more efficient? There’s also the issue of what they don’t say, and though I have, with practice, been better able to interpret those hidden signals, it’s a real struggle to try to catch them and interpret them on the fly. It gets easier with practice, but it takes a long time for it to become any semblance of natural.
Lovely article and discussion here by lovely people! I would rather be interesting and quirky than predictable…so far it has worked marvelously for me. I like myself a lot, have very patient and polite friends and the rest are, in my eyes, admiring my easy attitude to life. I could be wrong :) but I live in a dream world, my own movie, and I reach out with a smile.