What is it like to be a bean?

This post explores a topic that has nagged at us since we first realised the Bean was very different from other children. We have often wondered how he actually experiences the world. It is plainly obvious that his conscious experiences are, in many respects, very different to other children. Understanding how he sees things, thinks about things and generally processes the world seems to be of vital importance if we are to help him.

Philosophical musings

(Please skip this bit if you like- but if you enjoy a bit of philosophical mental masturbation, as I do, then please read the waffle below. The meat of the “autism” bit starts at the next heading)

The post below will get a bit philosophical in nature I’m afraid as these musing do run up against two of the most intractable problems in the philosophy of mind, namely the mind/body problem and the problem of other minds. The title of this post is in fact borrowed from an influential philosophical paper by Thomas Nagel entitled; “What it is like to be a bat?” In this paper Nagel concludes that gaining an understanding of what the experiences of a creature like a bat are actually like is impossible for the human mind. No matter how detailed our analysis of a bat’s behaviour and brain structure we will never understand what it is actually like to see the world with a sense like echolocation. There is something completely intractable about understanding what it is like to experience bat experiences, we simply do not have the necessary hardware to form such concepts. It will be forever beyond our understanding.

To a much lesser extent we are all bats to each other. As we never have direct access to other people’s experiences we must operate under the assumption that they experience the world in a similar way to ourselves. We then draw on our own subjective experiences to form ideas about what other people might be thinking and feeling. The good news is that, in this case, we have hardware that is highly compatible as human brains are all roughly the same. This means that, whilst we cannot know for certain what it is like for someone else, we can make a good approximation of what their experiences are actually like.

Now clearly there are differences in the way people experience even the same sensory data. For example, people who are colour blind have a different sensory experience of the same red apple to non-colour blind people. But these differences are generally not a barrier to understanding. We can easily conceive of what it might be like to be colour blind. We won’t know perfectly what it is like (unless we ourselves become colour blind) but it is not much of a leap of the imagination to conceive of what it must be like. But what if these brain differences were more profound as it seems is the case with the autistic mind? What if the autistic brain processes the world in a very different way? What if the Bean is like a bat? Can we therefore ever hope to understand the mind of a Bean and vice versa?

Is a Bean like a Bat?

So the question really is then “Is the mind of a Bean too alien to actually understand?”

I think the short answer is definitely no. We can understand the autistic mind because it is not THAT alien. He’s still, after all, a human little boy and so, largely, the hardware of his brain is mostly the same as other homo sapiens sapiens, but the differences are sufficient so as to cause many communication problems. The core assumption that we normally make when trying to understand other minds is that the mind in question is very much like our own. It is this assumption that we need to challenge. If we are to understand the mind of a Bean we first need to understand what these differences are.

So how is he different?

Learning how he sees the world is somewhat hard because the Bean’s communication skills are not sufficient to report on his own experiences. We can, however, make many inferences from his behaviour. Often we may dismiss the odd behaviours of autistic people as they seem to serve no purpose but I think, as with behaviour in neurotypical humans, most are functional, i.e. they do serve a purpose. So, with that assumption we can, in the first case, look at how the Bean behaves to gleam information as to how he sees the world.

Secondly we can draw on the writings and reporting of other older people with autism. Of particular use in trying to understand my son’s mind has been a beautiful book entitled; “The Reason I Jump”, by Naoki Higashida, a 13 year old boy with autism. This is a first-hand account of what goes on in an autistic mind and so is a useful reference for understanding the mind of the Bean. It should, however, be remembered that Naoki is not Bean and his autism is quite different, so it is far from a perfect guide book. That being said I would recommend “The Reason I Jump” as probably the best book to read if you are trying to understand what autism is like. It is an absolutely beautiful book that I guarantee will change the way you see autistic people.

Difference 1 – limited concepts of time

The Bean seems to lack the normal perception of the past and future. We are all very used to knowing what has happened to us in the past and being able to understand that future events will happen. This is such a basic thing to us all that we really take it for granted. I know that I went to work yesterday and did x,y,z and I know that tomorrow it will be Saturday and I’ll be doing a,b and c. Imagine if this was actually quite a difficult thing for us to do? Just pause and think how confusing the world would be!

If we imagine that we had absolutely no concept of the passage of time then we really could not function at all. We would not be able to distinguish remembered events from current events or even imagined future events from current events. The whole thing would be a complete jumble and we would be in state of complete and utter confusion as to what was going on.

Now clearly the extreme example above is not the Bean, as he is able to function pretty well but he is more towards this extreme than most people. He has more difficulty in distinguishing past, future and present so the world is an altogether more confusing place for him.

What are the consequences of this?

Well the Bean seems to be very focused on the here and now. With a more limited ability to distinguish past and future from the present perhaps this is simply a way to survive and cope? Focusing on what is clear and present is perhaps the only way to avoid complete confusion. If he starts thinking about past or future things then perhaps it all becomes a bit much so instead he focuses almost entirely on his direct experience of now.

This in turn, perhaps, explains why he has obsessions with repetitive activities like lining things up. These types of activity are purely in the here and now. They seem to have no higher purpose but the Bean clearly enjoys doing them so maybe this enjoyment is the calm they bring to the confusing, jumbled world around him? When he is lining up his toy animals there is no future, no past there is just the line. In many respects it is like mindful meditation for the Bean. It is soothing, calming and peaceful.

The importance of routine

Routines seem be very important also. For someone who struggles with the concept of future and past events, routine must be a crucial anchor in a seemingly turbulent world. If it takes effort to actually understand the order in which events will occur, then deviation from that sequence will be distressing. For most of us a deviation from an expected sequence of events will be quickly assimilated and compensated for. We can easily comprehend what the variation means and effortlessly work out how that might affect future events. For the Bean this takes effort and so can be distressing.

As an example, a recent trip to a National trust place was thrown in to panic because of the Sunday trading laws. Normally when we go to this place we walk through the shop, Bean looks at the toy animals and we buy him a little animal. Usually it’s a tortoise at this place because that is just what we do there. We go there and he gets a toy tortoise and that’s the routine. He’s not even particularly interested in the toy as he has hundreds of little toy animals and probably a dozen almost identical tortoises. It’s not actually about getting a new toy, it’s just about the routine at this particular place.

On this day (a Sunday morning at about 10:00) the problem was, because of archaic religious beliefs, the shop could not open until 11:30. This was a disaster for the Bean, his routine was thrown out, this is NOT what we do here! Now a normal child might have had a moan but could probably have been quickly placated by being informed that the shop would be open a bit later and they could have a tortoise then. They would then think ahead, see that they would get what they wanted and adjust the plan in their head. But for Bean the concept of “later” is hard to assimilate. He needed the tortoise now because that was what made sense of the world at that point. Thinking ahead and adjusting his expectations was impossible, so the world was not as it was meant to be and it caused him huge distress.

That distress was painfully evident to everyone within shouting distance. Thankfully, when I explained to the manager that my son had autism, she said we could take the tortoise and pay later. It still took the Bean about an hour to settle down properly and be happy again (even with the tortoise) but without it the whole day would probably have been ruined. When I did indeed pay up later on it transpired that the manager’s son had autism, so she knew score! So thank the sky pixie for Diane the manger with the autistic son. You saved us that day!

Problems in transitions

The Bean is not good with transitions. The reason for this is again down to his impaired ability to grasp the concept of time. When he is engaged in an activity he is present in the moment, but when moving on from that activity he needs to form a concept of what he will be doing next. Again this seems like such a basic thing to do but for him it is harder. Imagine not knowing if a transition was permanent, how long it would take and whether you would ever be doing something next! It would be bewildering and confusing, kind of like being suddenly abducted by aliens and whisked off to an unknown place by an unknown means of propulsion for purposes unknown. This, I imagine, is what it’s like for the Bean if he is suddenly expected to stop doing what he is doing and move onto something else.

What we have found, however, is that with sufficient warning the Bean’s brain can process the idea of transition and come to terms with it. So we tend to issue a series of warnings that we are going to finish here and move onto something else. Normally about 3 warnings over a 10 minute period is sufficient. During this time he begins to understand that the aliens are friendly, that they are taking him somewhere nice and that it’s all ok. Once used to the idea then the transition is far less distressing, he just needs longer to get used to the idea of change than most kids.

Difference 2- Focus and sensory filtration problems

The human senses pick up an enormous amount of data every second of every day. What is often not acknowledged is how much that raw data is processed and filtered by the brain. In a crowded room the ears may be picking up the sound waves from 20 or 30 conversations and yet we manage to filter out all but the voice of the person we are speaking to. Similarly when looking at an object we manage to concentrate on only the object in question and ignore the other light waves hitting our retina. This is quite a staggering feat of computer processing if you think about it and it is one that we all do every day without even thinking about it. The Bean’s ability to conducting this filtering is impaired.

What effects does this have?

He can, at times, become fixated on things that he should not be or sometimes “zone out” and not focus in on things he should. In conversations this can come across as deliberately ignoring you but I genuinely think that often he simply can’t focus enough to hear my voice, even though I am speaking right to him. There is simply too much noise for him to be able to focus.

Also I am convinced that the data between different senses can interfere with each other in the Bean. Imagine being in a crowded room where lots of people are talking quite loudly. It can often be hard for us neurotypical people to hear the person speaking to us. If you are like me, the amount of impairment will also depend on one’s mood. Often when I am tired it is far harder to filter out the back ground noise. I think for the Bean it is often like being in a crowded room (even when he is not) because all his sense interfere with each other. So the light waves hitting his eyes may affect his ability to hear noises.

With a neurotypical brain, filtering between the senses is quite easy. So, for example, looking at a nice view does not impair our ability to hear a conversation too much. Visual data does not tend to interfere too much with audio and vice versa. For the Bean I think all senses are competing with each other ,so given the amount of data our 5 senses pick up every second of every day it must be like being in a noisy crowded room struggling to follow a conversation at all times for our son. This also applies to his ability to focus on sounds, seeing objects and all the other senses. This may manifest in a lack of ability to focus or it can manifest as the Bean deliberately focusing on just one thing to the exclusion of all others, probably in an attempt to stop general white noise chaos going on in his head.

Like the rest of us, when he gets tired this filtration problem often gets worse and we see him go into “manic mode” where he just can’t seem to cope. When like this he desperately tries to find something to “ground” him such as a familiar object, book or DVD, but even when these are provided he immediately wants another familiar object because it does nothing to ease his distress. It’s like he is trying to quieten the noise but does not know how to. All his young mind can come up with as a solution is to ask for his elephant, his dinosaur DVD, some milk, some apple, his elephant again, some jelly beans, his dinosaur dvd again…etc etc. He needs a familiar hook to calm him but nothing seems to work. It’s really distressing to watch and I’m sure the cause of this is a breakdown in his already impaired ability to filter sensory data.

When the Bean gets like this I think the best way to understand it would be to imagine the following: You’ve had a very long day at work on a busy commuter train. You are tired, emotional and generally in a bad mood. Then imagine the person next to you sniffing, or eating crisps loudly, or the irritating mobile phone conversation and the annoying noise of the head phones that are just a bit too loud. You are tired, crabby and you want to chill but you can’t cos all this fucking annoy stuff is going on and you just can’t ignore it no matter how hard you try. Normally you could filter it out but in your tired state you can’t and it’s like finger nails on a chalk board – it makes you want to scream…. That is how I imagine it is for the Bean when he gets tired.

So what it is actually like to be a Bean?

Well I hope the above observations are illuminating. I don’t profess to have all the answers or even really to have a full understanding of my son’s unique mind, but perhaps the above ramblings can help us all to make a bit more sense of what is going on in his head. The good news is that there is certainly enough commonality of thought with us neurotypicals to build a good understanding of what goes on for the Bean. For other more profoundly autistic people this may be less possible, but I think for Bean the fog of autism, whilst confusing at first, can be penetrated. He can be reached, he can be understood and I think if we can all do this then perhaps we can learn something about ourselves as well. There is nothing like seeing something from a completely different perspective to increase one’s own knowledge and my son has a different perspective on pretty much every aspect of the world so he represents are great opportunity to learn for us all. So whilst he is certainly not a bat* he is definitely a Bean. Unlike the bat’s experiences, the “what it is like to be” of the Bean’s experience is accessible, with a bit of effort. This understanding, if achieved, can only be enriching for anyone lucky enough to be part of his life.

*See the “philosophical musings” section for context on the bat reference. The short version is that understanding what it’s like to be something like a bat is impossible for a human as they have whole other senses that we can never hope to know what it is like to experience.