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

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.