Re: theories on #autism: How not giving a damn may help to gain life experience #ASD #spectrum #autistic

dontgivedamn

I am currently reading and writing about how to support autistic young adults in independent living, with meaningful interactive technologies. I came accross an interesting article by Kapp about the transition to adulthood. It gives a quite comprehensive overview of the literature on this topic. Which also means it contains all the more traditional perspectives on autism as a disorder, perspectives about which I’ve become quite critical, especially the theory that says autistic people cannot make sense of themselves or others as ‘minds’ – that they could have no empathy in thinking about others as human beings with thoughts, desires, needs and the like. I have come to think that is just nonsense.

The theory that says autistic people cannot make sense of themselves or others as ‘minds’ – that they could have no empathy in thinking about others as human beings with thoughts, desires, needs and the like – I have come to think that is just nonsense.

This is what Kapp says in relation to independent living, which reflects and summarizes the traditional theories:

“Part of the challenge may lie in poor understanding of the self and others. People with ASD experience deficits in inferring others’ emotional or mental states from social cues, sometimes referred to as theory of mind or mindreading, especially when they are subtler or numerous (Koning & Magill-Evans, 2001). …Therefore, individuals with ASD may have poor awareness of their various challenges in general, which may affect strategies of working toward goals of independent living.”

I think that in coming years we will see increasing evidence that things are not that simple, that it is not just a matter of your ‘people understanding device’ not working, or your ‘executive planner’ being disturbed or lacking oil. If only because there is such a tremendous heterogeneity within the group – it hardly makes sense to talk about ‘most people with autism’ in the first place.

But what I find most interesting in this research so far is how this topic reflects back upon myself, and more generally, onto the ‘neuro-typical’ norms and values, and how we – non-autistic people – tend to frame our own behavior in terms of appropriate and succesful, where it in fact may not at all be so. This is ethically relevant, but it is also just interesting for cognitive theory: in what way do theories about autism reflect underlying assumptions about cognition and action in general? How can we use research on autism to critically reflect on these assumptions? Mostly it makes me wonder, over and over again: what is ‘good’ (succesful, appropriate, correct, effective) behavior anyway? All cognitive theory seems to assume  human beings can do things ‘right’ or ‘wrong’ –  but how do we know – as researchers – what’s right? How do we know? Who gets to say?

Take the topic of planning and executive functions, for example. Another one of those things that “most autistic people” apparently have trouble with. Kapp states:

“Moreover, adolescents and adults with ASD may have subtle difficulties or deficits in executive functions like planning and making decisions, other goal-directed thinking, and self-regulation (Hill, 2004), which would make independent living challenging at best.”

I am willing to admit that this is indeed true – but then add this: I am myself a *terrible* planner, and I have no diagnosis of autism. And I seem to get by in life at least moderately well. In fact I know many people who are bad at planning and live generally happy lives, of course with all the ups and downs that are part of it. Is being bad at planning an exclusive problem for autistic people? Is it bad to be bad at planning at all? I should say no, not really. In fact there’s even interesting cognitive theory out there to claim that human beings, in general, are poor planners. Our executive system is – to be honest – pretty much a fake! We *think* we plan, look ahead, keep track, order, and so on, but in reality, we just pretend, most of the time. We tell stories about our planning achievements, only after the fact. While in reality, we improvise. We muddle through. We just do. Or in the words of the late Hubert Dreyfus, we just learn to cope.

If I think about the difference between “most” autistic people and “most” typical people when it comes to planning, taking decisions, keeping track of what you are doing in daily life, then here’s my current hypothesis: It is that the trouble that autistic people experience may have to do not so much with the inability to plan, but instead with the fact that they tend to just care too much about the task and its outcome.

My current hypothesis is that autistic people may just care too much about the task and its outcome.

With this I mean the following: When I was a young adult, I did not know the first thing about planning and making informed decisions, but I just didn’t care so much about all the terrible mistakes I could (and certainly did) make. I generally thought I was doing things right (not based on any evidence, but rather on a mysterious, quite uninformed, unbreakable self-confidence) and then, when I looked at the results of my actions, I usually simply decided they were pretty ok! I defined the results of my actions to be exactly what I had wanted it to be. Sometimes this meant I had to ‘forget’ what I had originally planned to do, so as not to appear too much inconsistent with myself. At other times it was even more easy because, as I had plan nor goal to begin with, I was free to decide that whatever I’d produce was in fact a good result. And even when I did knew things had demonstrably gone wrong – let’s say, when a person would stand in front of me and shout in my face that things had really gone wrong – I would just say: O to hell with it – and carry on. O sure I would say: Sorry. And I would mean it. But it wouldn’t bother me so much having to say it. I would say: Sorry ok? Sorry, I am not perfect. Sorry, I am ‘only human’. My apologies. The sincerest, really. And that would be the perfect excuse for me to make mistakes over and over again. I don’t think this is being insincere. I think this is just what typical people do, pretty much all of them.

And the mistakes I’ve made! I have forgotton to meet my mother at the station when she came to visit my new home. Friends have been knocking on my door because I promised to cook for them, when I’d already just eaten and was in the middle of doing the dishes. I have forgotten meetings, birthdays, baby showers, graduations, faces, names. Complete people temporarily dissappeared from my perception and returned much later, with frowns on their faces. I have started about 60 comic books of which I have finished only the first page. The same with my ‘novels’. Practicing, every day, 30 minutes, for guitar lessons? Don’t make me laugh. I have started painting my house, only to discover I should’ve first done the sanding, only to discover that before sanding you need to dust, only to discover that before dusting you should’ve finished sawing planks, only realizing that before sawing planks you should first create space in the room (‘Damn there goes the paint bucket’). Only to discover I didn’t have the tools (A saw? A paintbrush? cleaning water?) and shops were closed on Sunday. And this happened not once – it happened several times. When I clean the room it first becomes a terrible mess. Sometimes the end result is really a bigger mess than before. I still do many of these things. Even after 40 years I am still surprised, even if just a little, that there is yet again dirty laundry and -dishes the next day – I mean for Gods Sake when do these things finally stay clean?

When I clean the room it first becomes a terrible mess. Sometimes the end result is really a bigger mess than before.

And then, the real learning in life about all these things came only very very gradually. And this learning by experience only was possible because I wasn’t too much distracted from all the noise and trouble caused by making all these (many, many) mistakes along the way. My idea, if it makes any sense, is that autistic people may be just too precise and ‘defined’ and too serious about the everyday tasks in life. And I mean this in the sense of the condition being such that you cannot help but be serious about what you do: it’s not something you could just change at will. In some sense, autistic people are too much adult already! Or they think they *should* be adults, and assume everyone else is very much an adult, whereas we, the others, are pretty just totally faking it. In contrast to taking things seriously, I just seem to muddle through (like the first kid you’d meet playing on the street, instead of ‘like an adult’). Acting very much imperfect, incomplete, inconsistent most of the time. My wife and I have said to each other many times over the past years: I wonder when the grown-up life really starts. Everybody else seems to have started it already, when are we? We still say it.

In contrast to taking things seriously I just seem to muddle through

When I do take things too seriously – which is often out of fear or anxiety – they are always at a higher risk of going wrong. It just takes the schwung out of it, the ability to go with the flow, to be ‘at ease’ while doing it. That ability – to be able to do things, do them wrong and then not care so much – until you gradually get the hang of it, actually has a very positive effect: it results in me having had lots and lots of experiences, generating a wealth of ‘data’ for my brain – from which it has been able to draw out the longterm ‘patterns’ – the ones that are stable and independent of the local situations and happenings. In other words, it has enabled me to gradually build expertise (what we call ’life experience’). Having turned 41 I can say I am starting to understand *just a little bit* why things happen and how they happen, how they hang together, and how I can navigate succesfully within these happenings. And I remember my mother saying at 50 that she had to revisit the ideas she had at 40, once again. But when I was 20 – speaking in hindsight – I really, really had no clue. I was a regular John Snow. The point being: and that didn’t matter at all!

It would do good to often look reflexively back upon ourselves and what we consider to be normal, and why.

Now of course I do not really know if this teaches anything real about autism and executive planning – I am not autistic, and I have not done the research, so I cannot know. I do know that many autistic people run into trouble trying to lead an independent life and that this is a serious matter that stands in no relation to the kinds of troubles I have described above. And perhaps there are actual, fundamental problems with planning and coordinating tasks associated with autism. I’d be interested in hearing about people’s experiences in this regard. But perhaps the trouble may also have other causes, in which executive planning interacts with several other aspects of the situation that cannot be so easily pinned down as a specific ‘disorder’, and fundamentally different from ‘typical’ people. What I wanted to highlight is that as researchers it would do good to often look reflexively back upon ourselves and what we consider as normal, and what underlies these considerations. In this specific case, to acknowledge something like executive planning is a theoretical construct we may have to redefine and revisit, not only regarding an explanation of autism, but with regard to theories of cognition and action in the most general sense.

Some complexities in Human Centred Design

modern timesI just read this blogpost in which Diane Golay, Phd student in HCI explains her values on HCI, which are strongly human centred. I fully subscribe to this point of view (hm, that’s from a song isn’t it? … what was it … O I think it’s followed by Russians loving their children too…) – Anyway: I just wanted to point out though that I think in the end it’s a bit more complicated. However, that should not lead us away from the basic values expressed in Diane’s post – it’s just that the facts of the matter about how humans and technologies interact aren’t always that straightforward as humanist conceptions may want to have them.

So what Diane and many HCD researchers with her hold up high is to see

computers as powerful tools crafted by humans to support other humans in their tasks and, to some extent, “enhance” their abilities.

And especially what I try to tell everyone entering a design education is this important lesson:

Instead of wondering “How can they not get it?”, we should ask ourselves “What did I not get?” (as a designer).

One thing that is not discussed however is that there are many humans on this planet. And most computers are in fact tools supporting humans quite well, only these humans are not what we call the “end-users”, who in turn may be very frustrated by that same system. In fact there are often multiple different “users” of computer systems and often it is no longer one person that is using the system but rather a whole organization or ‘society at large’.

So when I go through the security system in the Airport it’s eventually the government (which, in the end, is ‘all of us’) that is using that system to make sure I am not a terrorist, and as a consequence it may very well be that I, as a simple tourist, have a quite frustrating user-experience interacting with luggage checks and body scans and pass-port control machines that are slow and cumbersome and so on. Of course we should try to make it a satisfactory experience for everyone, but my point is that the starting point here was never to create a tool for the traveller – this is not ‘for’ the traveller, and it is not even for the individual security guard (who is biding her time sitting behind a stupid screen spotting guns in X-ray pictures) – this is a tool for the ‘organization’ and the organization is more than the individual person.

One of the most fascinating philosophical questions that we can explore through the design of HCI is exactly this: to what extent do we want individual people to conform to the needs of the larger organization – if that’s supposed to be for the greater good (questions that go back to people like Spinoza and others) – or is our ideal society one in which every individual is free from the chains that bureaucracy and state power puts on us. And so on. So this is one complexity we may add to the question of how to design human-centered HCI: do we mean the individual user interacting with the system, or do we mean that complete computer systems should ‘fit’ to the needs of larger societal systems (which may sometimes lead to individual people complaining about having to fill out stupid forms online and so on) – or do we feel there’s a way in which we can make everybody happy. And even if we can do the latter, if we can make it so that we are checked for terrorism and feel perfectly happy and agreeable about it because it is designed to be the perfect individual experience (think: in Disney World even standing in line is fun!) – is that a good thing? Is that desired? Or does it mean we have designed such maliciously deceiving interfaces that the masses are forever soothed, and those in power will remain so forever as their decisions and structures will will no longer be contested – the perfect machine state (think: The Matrix, and so on).

Another thing that Diane says is:

computers are not an independent entity existing in the world, but rather, as I wrote above, a human creation: we have the full power over their functioning and appearance.

Now I think we have to be very precise on what is meant here. It’s a bit like talking about whether we have independent decisions powers apart from what our brain ‘decides’ to do – some say yes, others claim ‘it’s all the brain that is doing it’ and our free will is an illusion. Both of these sides are right in some sense I guess. We can, right here and now, *decide* that it’s us, and not our brains, doing the deciding. This in and of itself proves that it’s not just our brains doing it – because our brains don’t “do” things – our brains are organs in people and it’s people doing things. So the “I am my brain” story is a category error. But on the other hand – we can’t bypass the functioning of our own organs. I cannot simply decide to make my heart beat only on willpower – there have been stories, but it can probably go only so far. Now what does all of this have to do with computers. Well, if computers are truly an extended element and fully enmeshed in human practices – and I think they are – then they are in some sense already so much part of us that we can no longer put ourselves apart from them and think about the one or the other independently. As Diane says: computers are not and independent entity. But that means precisely that we do *not* have fully power over their functioning and appearance, just as we have no ‘full’ power over our own brains.

There’s three ways in which this shows up, I think:

  1. If you ever tried to build something you wanted to build using ‘computer materials’ you find that, like any material, it’s resistant. The material has constraints that will co-determine what you will ultimately create. Even the most beautiful paintings are not completely constructed in the minds of the painter, they were constructed on the canvas and the properties of the canvas, the paint and the brush helped to shape the image that was finally produced. Design materials work with designers to create the design. We have no ‘full’ power over their functioning and appearance.
  2. In using computers people will come to adapt themselves to the structure presented to them, and when they evolve skills and ways of being that appropriate these technologies  you can no longer make a distinction between the person and the things – they’ve become a rich networked whole. Sometimes people go look for a better tool to do the task. Often they will simply change what they conceive of as their ‘task’ based on what the tool suggests that it should be. And our everyday experience of who we are – what it means to be a human – lies somewhere in between these extremes. This is not necessarily a good thing. Computers can be extremely powerful in making people believe and behave according to the norms and goals implicitly hidden in the way the tool operates. They change us. Just look at who we have grown a little screen to our preferred hand in the past five years. Only the most hard-headed people, with the time on their hands to fight the system, will go against it and really ‘do their own autonomous thing’. Now given the situation we are in now HCD suggest we should design computers ‘for people’ (and not the other way around). This feels good as a basic orientation. But we should not forget that we *already* are shaped by all the technologies that came before the ones we are designing now. We have been shaped by the way books and formal education have framed what knowledge is and learning. We have been shaped in the way we conceive of living and transportation by the concrete structure of cities. We have been shaped by industrialization and machines in the way we conceive of labor and economy. We are always already fully technological beings. So what ‘human’ do we actually want to design for? Perhaps, to be honest, we should be glad we are no longer the ‘real’ fully natural human that would pop out when we put down our technological clothes. Perhaps the only thing left of us will be a racist, raping killing grunting cave-man. We don’t want to design for him, do we?
  3. Turning back on my earlier point: computers are often reflections of systems, organizational, societal, political systems. Systems existed before there were computers. I think it is very important to critically reflect on these systems. Some systems are utterly bureaucratic and technocratic, and the individual people in them no longer act as people but only as little cogs in the machine. Personally I think this is a bad thing. But it’s not an HCI problem per se. So what we should be addressing is the way individual people are getting caught up in these larger organizational systems up to the point that no single person has the power to break it down – the system has become a power of its own. This happens very quickly – just put together a bunch of 4-year olds and see the social dynamics – it’s all in there in prototype form. So it’s part of being human that apparently we create social interactive patterns that we then become, to some extent, mindless slaves of. My point is that computers form part of this system – they are not the sole cause of it. However in my view they do have a special role in it because computers can fixate such patterns to become hard realities rather than soft constraints. We see this each time an interaction with an institution is being automatized: when we were talking to the lady at the counter, we could still plea our case, and she might believe us, and say well ok, only for this time, I’ll let you through, I’ll do the thing – but next time fill in the form, bring the card, pay the money, and so on. A computerized procedure, however, will never do it – it will always act as if it’s the most ruthless, strict, mean counter-official you’ve ever met – the guard that makes life hell for the prisoners in the extra-extra-extra security ward. This is something we should be working against, in my opinion, but it is not just a matter of interface design rather than one of designing bureaucratic systems at large.

Thesis back online to be downloaded #embodied #interaction #technology

I discovered CreatingTracesSharingInsightmy Phd thesis was no longer downloadable. I fixed this, so as from now it is possible again to download the entire thesis. This you would do for example if you want to read chapter 2 which deals with three different strands of Embodied theories in relation to the design of interactive systems, or for example if you want to check out chapter 6 and 7 which deal with the question of how actual interactive systems help us understand embodiment better, and how we may better design for embodied interaction than we usually do at the moment.