Can a neurotypical understand what autism is?

by Ingrid Robeyns on April 3, 2012

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?

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.

{ 38 comments }

1

SN 04.03.12 at 8:39 am

I’m sure you know that even that wouldn’t fully let you into the autistic’s world –because you are trying to make a kind of sense you are familiar with out of those inputs. An autistic person of a certain kind might not realize there is more sense to be made out of them.

I keep thinking perhaps we’re at the beginning of understanding, even a small amount–and this will give us a chance to communicate better between these different kinds of experiences, ours and theirs–one day. Soon, I hope.

I love the idea of role switching as a way to promote understanding. We need a national role switching day. Or maybe a week.

2

Ingrid Robeyns 04.03.12 at 8:45 am

SN: yes, absolutely, you are entirely right about this, thanks for pointing this out. It was so obvious to me that neurotypicals will never fully know/understand that i didn’t mention it – thanks for making that explicit.

I actually hope there will be more suggestions among CT readers on other ‘tools’ we have to create real understanding.

3

Giovanni Tiso 04.03.12 at 12:55 pm

“That world that was presented to me was not only very hard to follow and understand, but it suck my energy being in there”

That is a key for me, how exhausting the experience of a world tailored around neurotypical responses to stimuli must be for a person with autism – and that part will also be the hardest to simulate.

(I don’t know about the Leo Kanner Huis – I’m sure it has value, but creating an overwhelming sensory environment strikes me as the easy part. There are psychological dimensions to being in such an environment all the time, and not knowing why it operates in that way, which are rather harder to build into such simulations.)

4

Don A in Pennsyltucky 04.03.12 at 2:03 pm

My first encounter with autism was in the mid 1970′s — my girlfriend’s younger brother was autistic and demonstrated many of the classic symptoms including arm-flapping, sudden withdrawal, along with moments of clarity.

My next encounter — although I didn’t know it at the time — was attending a lecture given by Temple Grandin on the subject of livestock handling. This would have been roughly the time period where the HBO movie ended. I forgot about her until I saw a reference to her book “Thinking in Pictures” shortly after it was published and after reading her book, I began to get an inkling of what was going on in that young man’s world all those years ago.

Last year, I had the opportunity to attend another lecture by Dr. Grandin. This time she was speaking on the subject of autism. While it may not be possible for us neuronormals to understand what autism is in the same way that autistic people do, I think it is possible for us to glimpse portions of their world if we take the time to become informed.

5

bemused 04.03.12 at 4:41 pm

My SF bay area girl scout council conducted leader trainings to improve inclusion of kids with learning disabilities that sound like a low-tech version of the Head Quarters. It was eye opening for me. They had a timed test in which one answered multiple choice questions where the question and answers were written in an alphabet that required a table to decode; there were reading examples requiring reading the material through a mirror, thus the text was reversed; there was a recitation of facts to be memorized when several equally loud noise sources were blaring … possibly more, it has been a few years. What I remember so vividly is how drained I felt at the end of the exercise. Obviously these tasks encompassed simulating many different disabilities, but the realization that children could work very hard at a task yet “fail” in comparison to children without these issues, and be regarded as lazy or not trying by their teachers (or leaders) to boot… horrifying. I think everyone working with kids should be given a similar experience, together with the time to reflect on it and discuss it.

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Chris Bertram 04.03.12 at 4:57 pm

_To what extent are certain types of knowledge only accessible to those who have had certain experiences?_

Parallel cases for thinking about this would be Mary and the black-and-white room or Nagel’s bat, I guess.

Additionally, phenomenological approaches stressing our bodily nature: Merleau-Ponty I guess (though I only really know this at second hand through Havi Carel’s book _Illness_ .

7

Substance McGravitas 04.03.12 at 5:01 pm

A lot of the behaviours I see in my daughter – who is in comparatively lucky shape – seem very much to me like amplified aspects of myself and her mom. The little quirks that make her mom and I who we are – I don’t necessarily wanna claim normalcy here – and which are strengths in some circumstance are amplified until they become weaknesses.

8

Just some guy 04.03.12 at 5:22 pm

This entry reminded me of T. Nagel’s “What Is It Like To Be a Bat?”

http://instruct.westvalley.edu/lafave/nagel_nice.html

While “role switching” might give neuronormals greater compassion, I doubt that true empathy is possible. The lived experiences of those with autism — or schizophrenia, or major TBI, or any of a dozen MH labels — may be too far afield.

After all, I can’t even understand what makes the Tea Partiers tick.

9

Caroline 04.03.12 at 5:29 pm

Excellent post, Ingrid, and I’ll be reading all of your Autism Awareness posts with interest.

The Headquarter sounds like an evocative analogy of the sensory-overload aspects that some persons of atypical neurobiology experience, but as Giovanni Tiso said:

“…There are psychological dimensions to being in such an environment all the time, and not knowing why it operates in that way, which are rather harder to build into such simulations.”

Boy howdy are there ever “psychological dimensions.” AFAIK, I am not on the spectrum myself, but I became aware around puberty that I experience the (sensory) world in different way than is considered “normal” – though it’s unclear how far from “normal” I am. Do I get to suppose that I might share some aspects of experiencing the world with people on the autism spectrum, since what I’ve read sounds so similar – or not, given that a) I don’t have (have never sought) the diagnosis; b) I’m clearly not in hand-flapping/lamp-post hugging territory?

Whether or not I ‘understand’ the experience of being autistic is not so important to anyone with autism, unless, of course, I am such a one …

10

praisegod barebones 04.03.12 at 5:57 pm

3 quick thoughts

Chris Bertram@7: As someone who works in the philosophy of mind, and who has thought a fair bit about autism on both a theoretical level (because my PhD was about philosophical implications of the theory of mind debate at around the time some of Simon Baron-Cohen’s work on mind-blindness was getting fairly big play) and a practical one, (because my ten-year-old son is autistic), I’ve always been struck by the extent to which the way in which black-and-white Mary can’t understand color doesn’t seem to be illuminating model for the way in which we (or at least I) can’t understand what it’s like to be autistic. I find it quite difficult to articulate why that is – so if anyone has any thoughts on that I’d be quite interested in them. Thinking about it though, one thing that might be relevant is the way in which it seems that listening to someone like Temple Grandin can give you a kind of narrative understanding of some aspects of what it might like to be her, whereas that doesn’t seem like it would help in the Mary case. (I also think that may be why the Mary case isn’t a good model for thinking about our understanding of unfamiliar emotions, but that’s another story)

Ingrid @ OP: given your description of the Kanner house, (and again, some of my experiences with my son) it strikes me as quite plausible that it can give people some insight into what it’s like to live with autism. But on a philosophical level it strikes me as puzzling how we could know that it does so.

Ingrid @ OP again: something which I found helpful when thinking about my son’s experience – and in particular in learning to appreciate the extent to which his passive grasp of lnaguage seemed to outrun his fairly limited expressive abilities, and also how stressful it can be trying to keep up with multiple streams of verbal input – was thinking about my own experience of being regarded as a fully competent adult user of a second language which I understand pretty well but to nothing like a native speaker equivalent level.

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praisegod barebones 04.03.12 at 6:01 pm

Sorry, those three thoughts weren’t quite as quick as I thought they would be.

12

liberal japonicus 04.03.12 at 7:29 pm

Ingrid, this and the other posts are really great. As praisegod suggests, I think this post is related to Brian’s previous post on Bilingualism, in that it is really really difficult for us to imagine having that native speaker level.

I’m not sure if this is helpful, but I am working on a paper that is tentatively titled “What autism can teach us about language teaching”. I teach in Japan, and I’m really struck at how some descriptions of dealing with autistic children seem to mirror the descriptions of Japanese university students in language classrooms. My thought was that in looking at what interventions have been developed for autistic children, we could plug some of those things into a Japanese language classroom.

My first draft had a notion of ‘cultural autism’, where the classroom behavior that we think is incomprehensible is created and maintained, such that students behave ‘autistically’, but a good friend who has an older high functioning autistic son (who is in his late 20′s now) wasn’t too keen on the idea. I understand how it may present too rational a framework to understand autism and be too reductive, but I’m wondering what you think of the notion.

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Zb 04.03.12 at 8:32 pm

I’m always wary of “disability simulation” exercises. They can be both too much and not enough at the same time. If an actor spends an afternoon in a wheelchair to prepare for a role, that experience won’t show him all the hassles of dealing with a mobility impairment 24/7/365. If you put on a blindfold and try to navigate your street, blindness seems absolutely terrifying and incapacitating — because you don’t have the experience and knowledge to navigate through the world without vision.

All we have to understand people with autism are the same tools we have to understand anyone — empathy, imagination, and, most importantly, humility. I worry when people use tools like het hoofdkwartier without humility. I’m glad that this project gives people something like the experience of autism, but I hope the people who go through it don’t overestimate their understanding.

14

Ingrid Robeyns 04.03.12 at 9:16 pm

Thanks for all the interesting comments – a few quick responses before I switch off for today…

Praisegod Barebones: thank you for chiming in — you should have written some of the posts in this series! :-)
I take your second point. We do now know, and I think we cannot know. So we try to do the best we can (in epistemological terms). Since the Headquarter is designed by specialists who diagnose and treat people with autism and do research in this field, I think they have more or less ‘as close as they can get’ insights, which they then tried to translate into an experience which others, who don’t have that expertise, can have.

I like the second language analogy, but will have to think about it more. First thought: it seems to be restricted to the communicative dimensions of autism. But I don’t see how the more affective dimensions, or for example the anxieties, or the eruptions of emotions (very intense tantrums among toddlers with autism) can’t be captured in this analogy.

Zb: you are right. I fully take your point re: humility and the limits of ‘disability simulations’. I also should have written in the OP that this particular tool (the Headquarter) gives only a partial insight. I think in order for a neurotypical person to get any deeper understanding it has to be one part of a much broader package of experiences, including, i’d say, spending enough time with people with autism. We have an after-school child minder, who’s a student of pedagogics at university, and she deliberately sought out a family with a child with autism, knowing that she couldn’t just learn this from the books. But then, the trouble with this ‘epistemological strategy’ (if one wishes to call it that), is that people with autism are so diverse – if one forms one’s understanding of autism based on experiences with just a few persons with autism, one is seriously risking to have a very limited or biased understanding.

15

Mark English 04.04.12 at 12:06 am

Interesting post and discussion. As there is such variation I wonder if it is a mistake to imagine that there is one thing here to understand, ie ‘autism’. Even the idea of an autism spectrum may be too restrictive, perhaps?

My other point is that to the extent that a given condition involves a cognitive deficit (eg an inability to see things from another’s point of view, or linguistic problems) this would be impossible for someone without the deficit to really understand – unless their brain could be manipulated to temporarily have that deficit. We cannot unknow what we know, if you get my meaning. Though I suppose the experience of being in a foreign-language environment would as suggested give some sense of what it may be like to have general linguistic problems.

16

steve 04.04.12 at 1:21 am

Excellent point about the exhaustion that occurs with autism. We clearly saw this with our son. Another point that is key (there are many) is that most of the odd behaviors these kids exhibit are ways of coping with their anxiety when dealing with the rest of the world. It was very difficult getting teachers to see this, but with time most caught on. One key thing we used to tell teachers that used to help them understand (because he is bright, they thought he should be able to act normal) is that in a world where teens are mostly interested in their friends and their music, our son had no friends and no interest in music.

Steve

17

drkrick 04.04.12 at 1:37 am

Let me chime in as the parent of a diagnosed Asperger’s person who is fairly certain they are on the spectrum themselves but has no formal diagnosis.

Exercises like the Headquarter sound useful to convey a taste of the experience of autism, but as noted above, no sense at all of living such an experience 24/7/365. I wish there was some simulation that could give people like us a taste of what neurotypical life is like. It certainly looks easier and more comfortable, but I for one can’t get it any more than I can get what makes being a Tea Partier attractive to some people (bow to Just Some Guy).

Anything that helps people understand that we work terribly hard to be as sociable and organized as we manage to be (as minimal as the results appear) can only help.

18

purple 04.04.12 at 2:00 am

Role switching is common on International Woman’s Day. I know a family who does it in the Ukraine.

Actually the day is a well recognized except in the backward U.S.

19

Pavonis 04.04.12 at 9:34 am

What is it like having autism? It’s not so hard to find the answer – just ask someone with autism! I have Asperger’s syndrome and exhibit many behaviors associated with autism, such as avoidance of eye contact, being easily startled, especially by touch, hand flapping, and strange focuses of attention. I had poor motor skills and a speech impediment as a child.

What is the worst part about having autism spectrum disorder? I think it’s difficulty with romantic relationships. One neurotypical ignoramus wrote that autistics don’t romantic need love – pornography is enough for them. False. But people with autism spectrum disorder are blind to social cues. Expecting them to pick up on subtle social hints is like expecting a blind man to tell you the color of a flower. It’s not going to happen, no matter how hard he tries.

But autism spectrum disorder is not all bad. Some of my teachers thought I wouldn’t amount to anything and tried to get me transferred out of the regular public school system. Fortunately, my parents opposed this. Ultimately, my math, physics, and computer skills ended up taking me to an elite Ivy League university and into a good job. So be cognizant of the differences but don’t be too quick to underestimate what someone with ASD can do.

20

BKL 04.04.12 at 2:56 pm

My 40 years of working with children on the spectrum did not give me the insight that having a panic attack for 9 months did. Though the panic attacks made me understand the anxiety that those on the spectrum experience 24/7/365, I still had a past NT history that made me aware that things would eventually resolve. Since the panic attacks, I have immersed myself in readings by those on the spectrum and working weekly with a family in their home and reading the posts by Sondra. Ultimately I would like to create a ideal learning environment for those on the spectrum who are learning to read and, therefore, have steady state stimuli that can be reread. Also would like to start an infant program of socialization and communication and motor skills for ALL infants just in case……The black and white and foreign language analogies are too one dimensional unless you were put into a foreign country with impaired abilities to learn.

21

Mike Huben 04.04.12 at 3:16 pm

Can a neurotypical understand his own alternative brain states?

If by understand you mean “experience”, a neurotypical can understand his brain states but not understand autism.

But if you mean “have a memory of it or something like it”, then the question is more reasonable. We have terrific difficulty remembering just what it is like to be drunk, depressed, infatuated, etc. Maybe it is easier to understand through our coping strategies during those periods. That gives some hope that we could understand what autistics go through, if we reproduce conditions which produce similar coping strategies.

22

praisegod barebones 04.04.12 at 5:21 pm

Pavonis @ 19 is absolutely right, of course. (To the extent that I almost immediately had misgivings about not having said something of the same sort after I posted my original comment.) I’d certainly say that, insofar as I’ve got any insight at all into what things might be like for my son, a lot of it has come from interacting with, and listening to people like David Harmon who came and posted on one of Ingrid’s earlier threads. ( including the most useful thing that anyone has ever said to me which was along the line of Steve @ 16′s comment about the extent to which the life of people on the autism spectrum were often pervaded by incredibly high levels of social anxiety )

Relatedly, I’m often struck by the way in which some attempts by NTs to convey what they think the inner life of an autistic person might be like have a tremendously ‘othering’ quality to them, which I don’t think is helpful. Some of Simon Baron-Cohen’s writing seems particularly bad in this respect. Things like Substance McGravitas @ 7 seem like a useful corrective to this kind of thing (though obviously not the full story)

23

Ingrid Robeyns 04.04.12 at 7:27 pm

My first reaction to Pavonis @ 19 was like Praisegod Barebones @ 22. But I am not entirely sure, and the reason has to do with the wide variety within the group of people with autism. One of the things that bothers me most about myself writing here, is that I know comparatively little about severely autistic people with very low levels of functioning – and can we just take for granted that what people with autism who are able to describe what autism means for them, is also the case for people with severe autism and severe cognitive disabilities? I really don’t know – am just asking.

But still, it’s in general a valid point if one tries to care about respect and attempts at non-othering that one better tries to listen to (and ask questions to), rather than talk about. I think we should also not expect miracles from people – change in views and understanding come step by step, not one staircase at a time. So we need different steps that people can take, not just one magic formula. And not everybody knows people with autism well enough to have these kinds of conversations with them, and I think we should also try to search for other ways of creating understanding (for those really trying to understand) then one-to-one encounters. I think we need an ‘and-and-and’ strategy, rather than just believing/hoping that if we have talked with one person with autism, or have read one autobiography, or have seen one movie that does a good job, that we’ll understand.

And, what Substance McGravitas said @7: that’s very recognizable. And there is more to be said about this, but my thoughts aren’t entirely clear. If they become clear, I’ll come back to your words.

by the way, I just want to thank again everybody for posting these thoughtful and insightful posts — I am really learning a lot from you all, and am truly grateful that we are doing this together.

24

awy 04.04.12 at 10:01 pm

seems to me that trying to imagine having some experience carried out by neurophysical structures we do not possess is more difficult than trying to imagine not having some already present process run.

25

ChrisTS 04.04.12 at 11:42 pm

This has been afscinating series of posts. I suspect I might have been diagnosed as a high-functioning autism case if anybody had any idea of it back in the 50′s.

That said, I wonder if anyone else is botherd by the use of ‘neurotypical,’ as a noun, to refer to people who are nowhere on the specturm or have no other significant cognitive disorders? (My own reaction might be colored by my deaf mother’s rejection of any kind of ‘being deaf is just another way of being’ rhetoric.)

26

ChrisTS 04.04.12 at 11:45 pm

oops. I had more to add.

My mother, who did not live long enough to fully encounter the ‘differently abled’ movement, would have been angry at the suggestion that her deafness was not a disability. My own repsonse is more that in adopting this perspective (that we overlook our presumptions of what is ‘normal’ and label others as ‘not-normal’ ad should cease to do so unreflectively) we ought not to become comfortable labeling people who fit the ‘norm.’

27

EllenF 04.05.12 at 3:25 pm

I am curious about the term nuerotypical. I am a school teacher who has had experience with diagnosed asperger students and other children who are ADD. The term seems too boxy for me. Inother words it sounds like there are a group of nuerotypical people who are circles and then the other group is the squares or the neuroatypical people. Yet when I review my experiences with students and people in general, neurotypical or being functionally capable is particular to the situations and conditions at hand.
Please explain how you would define neurotypical.
Thanks

28

The Bobs 04.05.12 at 9:32 pm

drkrick @17 = ” I wish there was some simulation that could give people like us a taste of what neurotypical life is like.”

It can be done; at least I have done it. I have even managed to move myself in that direction permanently. Send an e-mail if you are interested.

29

The Bobs 04.05.12 at 9:34 pm

I didn’t realize that my e-mail would not be listed it is wankhman – at- yahoo dot- com.

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Judith 04.05.12 at 10:22 pm

It has been mentioned here that the Hoofdkwartier experience has the drawback that you, as neurotypical, have the advantage that you process those confusing stimuli with a ‘normal’ brain and the lived experience of a ‘normal’ life which informs you that this is just a temporary situation and that the ‘real’ world isn’t so disjointed and overwhelming.

How does one remove those capabilites in one’s own mind?

Now I do apologise if I’m taking the conversation into inappropriate territory here, but surely many people must have considered the use of hallucinogenic drugs like LSD as a way for us neurotyicals (no, I do not like the term very much) to experience first hand what it feels like to live in a totally alternative reality.

Before I offend anyone; I’m not saying the experiences of an LSD trip and being autistic are even remotely the same. But intimate experience of the fragility of your mind’s construction of reality from its sensory inputs has to provide insight into condisions such as autism.

It is my fear of that experience that I’ll forever be to scared to take such substances.

31

Substance McGravitas 04.05.12 at 11:12 pm

But intimate experience of the fragility of your mind’s construction of reality from its sensory inputs has to provide insight into condisions such as autism.

LSD didn’t do that for me – provide insight into conditions such as autism that is. In positive surroundings it’s a positive experience, and yes it’s a good lesson in the fragility of your brain (and reality I guess) but I don’t think it has much to offer to the understanding of what I see ASD kids getting up to or responding to. It can be bewildering but can also be a very very good time in which you think you have developed keen insights into life, the universe, and everything and the amplified stimulation is, uh, groovy.

32

JohnW 04.06.12 at 1:25 am

About two years ago I self-diagnosed as Aspergers (AS). I am in my late fifties, married to a non-AS, nypical (John Elder Robison’s word) person. I have been struggling for many years (before I knew about AS) to explain to my wife what it is like to be “me” in the normal world.
The Headquarters sounds like it would be a good first approximation of that experience.
A social problem I have had to learnt to overcome is in a social situation where lots of people are talking together. I try to follow the conversations, and think of something to contribute, but by the time I have been through that process (like a time delay), I either couldn’t figure out how to be heard, or the conversation had flowed onto a different topic. It was like a flock of birds flying in formation and continually changing direction, while I was working very hard trying to keep up, only to find that the flock was somewhere else in the sky. So I’d start all over. I had two reactions. I’d either zone-out and mentally leave to conversation, or have a melt-down afterwards, in the apparent safety of my home. In both cases, my wife would tell me that my behaviour was in appropriate, as that was not what normal people did. This only invalidated my sense of self. I was being told that my opinion, and my perception, did not count. I have now learnt to handle those social, conversation, situations by have zero expectations of participating, and just become the passive observer. If I am asked a question, I will answer, but always with the expectation that I will be interupted, and have my answer cut-off before I finish.
I have been thinking that an analogy for nypicals to begin to understand their behaviour on AS folk, would be if the nypicals in a group participated in conversation while using headphones and microphones that introduced a random, variable, time delay (maybe 1-5 seconds) so that they could experience this continual disjointed conversation experience.
But, all this is only of benefit for those nypicals who are confronted with an Autism Spectrum person, and those nypicals want to learn what it is like to live like another, non-nypical, person.

33

bad Jim 04.06.12 at 7:48 am

I know nothing of autism beyond what I’ve read, and like Judith I’ve wondered if drugs might give the rest of us a taste of at least a part of the phenomenon. Perhaps someone on the spectrum could sample them and report whether they make things more or less intense. An equivalent question would be whether there are any drugs or environments which allow autistics to approximate a neurotypical state, and it’s equally not obvious how this could be evaluated. Not, probably, the most promising line of research.

The phenomenon of mind-blindness has been fairly well described, and perhaps this could be represented for the rest of us by actors in a play in which the motivations and actions of the characters were equally opaque to neurotypical and autistic audiences. A prototype could be continually evaluated by an autistic audience, with the bizarreness of the action gradually increased until even they considered it unrealistic.

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Goo Ya 04.06.12 at 4:47 pm

I have Asperger’s but was not diagnosed till adulthood. What’s it like? The question is a bit ironic given that it asks how one can empathise with people who suffer from inability or reduced ability to empathise. The conditions for identification rule it out. Of course, you can describe it some ways. It’s like not making sense of something, without (pre-diagnostically) knowing that you’re not making sense of it. I’d say an analogy is a more global version of needing those guides that travellers sometimes produce about the meaning of gestures in a foreign country, where these are different from one’s homeland. But that’s imperfect since some e.g. facial expressions are near-universal, so can be used to elicit information even where one doesn’t “get” what the foreigner is saying or gesturing, whereas AS people don’t have that resource. I agree with what Pavonis says, that romantic relationships are particularly difficult to form and that it’s crass to say that porn is the answer – as if all AS people need is some physical outlet.

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ChrisTS 04.06.12 at 11:32 pm

@JohnW #32:

I have had a similar kind – not the same – experience due to a hearing problem. In large crowds, or just noisy rooms, I cannot distinguish people’s voices. As a result, I am always ‘behind’ in figuring out what is [has been] said.

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Red 04.07.12 at 12:33 am

This afternoon I took my eleven-year old son with severe autism out for a drive and a snack. He lives in an excellent residential care facility in the mountains of New Hampshire. He seemed fine initially but all of a sudden started to scream and bang his head against the window. This lasted for about 20 minutes. Then he seemed fine again, at least for another half hour.

What happened? He cannot talk, and does not know sign language or any other form of communication. I did not notice any external stimuli that could have provoked the outbursts, but it is quite possible that a sudden beam of sunlight, the shadow of a tree that spooked him, a foreboding of seizures to come later, the expectation of an ice cream, anxiety about not getting their fast enough–any or all or none of these could have caused discomfort. “Understanding” this is not a matter of allowing a different perspective, accepting varying levels of empathy, etc. That is only a beginning. The process(es) is (are) way more complex than that.

Thank you for making autism awareness real.

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Ictus75 04.07.12 at 6:08 am

I have Aspergers. Unfortunately, there is no way for an NT to really have any idea what my life is like. You can read all sorts of stories and participate in various exercises, but that doesn’t even come close, because it’s such an internal thing. I’m Autistic at my very core. It’s hardwired into me and permeates everything I do/am 24/7/365.

The other thing is that we are all different – there is no ‘one size fits all’ Autism. That’s what makes it such a slippery slope, because you can’t define it nice and neat like you can many physical afflictions. But I will tell you, living in the world can be very exhausting. I know that many of us can’t filter the incoming information and can often become overloaded.

That said, I appreciate anyone who makes a real attempt to understand what my life is like, and who wants to build a bridge to my island.

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Becca 04.09.12 at 4:13 pm

You description of het Hoofdkwartier reminds me of some “activities” on the pbs “misunderstood minds” project- you can click through from this link http://www.pbs.org/wgbh/misunderstoodminds/attention.html. It’s a similar tidbit of trying to understand what non-NT people are working with/experiencing by forcing sensory overwhelm. Come to think of it, back when I was living in the Netherlands there was this terrific PSA for a while about dyslexia; it was a bit of Start Trek with Dutch subtitle that start to get… mangled and confusing as it goes along. All of this reminds me just how different my own experience is from someone without any sensory/filtering/attention/processing “differences” — I forget that.

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