In order to better understand the dilemmas around autism, here’s an analogy that I want you to consider: Imagine having a basket full of objects. Most of those objects are marbles and most of those marbles are wooden. In that basket however there are some glass marbles too, as well as some glass cubes. Now imagine two people watching that basket and having the following conversation:
* There are two categories of objects in this basket: the marbles and the cubes.
* No, there are two categories in this basket: the glass items and the wooden items.
Who is right? Well, both and neither. Because you can make a third categorization: the glass cubes, the glass marbles and the wooden marbles. And that’s the discussion we’ve been having as an autism community the past few years when it comes to low and high functioning autism: we either categorize according to the shape, so we put all the marbles together, completely disregarding the fact that some people may look neurotypical but are, in fact, very much autistic and as such have an autistic person’s needs (when we don’t recognise the struggles of women on the autism spectrum for example because we have defined the “autistic behaviour” with male standards since we have studied mostly males on the spectrum) or according to the material, so we group all those who are on the autism spectrum together, completely disregarding that they may be of the same material but they will have different needs and be in need of different approaches (as we did in DSM-5, when we took the term “Asperger’s Syndrome” out of the diagnostic manual and now everybody is diagnosed with an “Autism Spectrum Disorder/Condition” which, to somebody without an extensive knowledge on the autism spectrum, sounds like everybody with and ASD/ASC has the same needs).
Now let me take this analogy further. If you see a handful of marbles, one of which is glass, you are going to notice that this marble is made from glass. That is not going to stop you however from treating it like a marble and playing with it the way you would have with the other marbles. But soon enough you realize that you can’t do the same things with this marble that you can with the wooden ones. You can’t, for example, hit it very hard because it more fragile than the wooden ones. You can’t throw it from the first floor and expect it not to break. You can’t dive it in boiling water and expect that you’ll be able to touch it afterwards. In fact there are many things that you can do with a wooden marble that you can’t do with a glass one. But there are also many things that a glass marble can do that a wooden one can’t. A glass marble can change colour according to the light. It can reflect other objects and change their shape and size or perhaps can come into more interesting colours. None is less than the other. They are the same, yet so very different.
Now how about a glass cube? A glass cube would be much more difficult to include in a classic game of marbles. It can’t roll, so it spoils the fun of rolling objects. It may chip easier, because of its corners, so you should be even more careful when you use it. Its corners can be really sharp, so they can potentially hurt you (if you press them hard against your skin for example). That, of course, does not mean that the glass cube is any inferior to the glass or the wooden marbles. It’s just different on another level. Nor does it mean that you can’t include it in a game of marbles at all. You just have to be more creative on how you are going to do that. Instead of making the point of the game being, for example, whose marble is going to go furthest, you can make the point of the game whose marble is going to touch the glass cube first, or go past the glass cube first. The possibilities are endless really, as long as you are set on two facts: a) not all objects have to be enjoyed the same way and b) all of the objects should be included in the game.
The mistake we do as a society is saying “There is absolutely no room for cubes in a society of marbles” and “If you are a marble it doesn’t matter what you are made of, I’ll always treat you as if you are wooden, because you are a marble”. In other words, if you are unlucky enough to have to make other people come out of their way to accommodate your needs you have no value, worth or place in the today’s society. If, on the other hand you fit in just enough to be able to play by rules that are made for wooden marbles, no matter what impact that has not you (since you are made of a much more delicate material), you should play by those rules and put yourself in the risk of breaking. And no wonder that soon enough you are going to crack, or get chipped or even break and then you are going to get thrown away because you won’t have any value anymore. The result is a whole lot of wasted marbles who would have been much more useful if we just changed the rules of the game.
And here comes the other problem those who work with people on the autism spectrum face: having to make the countless efforts and waste huge amounts of both time and money in an effort to roundify the cubes. In other words, those of us who are unlucky enough to be in an obviously different shape suffer through many hours of interventions and approaches and lectures and procedures specifically designed to make them behave like a marble, whereas those of us who are different only in material and not in shape have to go through a lifetime of being expected to have the same properties as a wooden marble and being constantly judged on the fact that we can’t do something that our material is by nature unable to do. And the answer is so simple it’s almost funny:
Yes, it’s a cube. It’s never going to roll. No, it’s not useless.
Yes, it’s a glass marble. No, you can’t throw it from the first floor it’ll break. Try to find other ways to play with it.
In other words, the solution lies only on a change of perception. And what society must finally realise is that perceptions can change: people can’t.
Let me offer a further example of what I mean: Imagine a little boy being given this basket of objects as a gift. Imagine that the boy wanted to play only with the marbles, so he constantly leaves the cubes in the basket and doesn’t include them in the game. His father goes to him and watches him play and notices that he doesn’t include the cubes and asks him why. The boy answers: “well, they don’t roll”. So the father takes the cubes away, gives them to a glass expert and turns them into marbles. Then he gives them back to the boy and now the boy has a basket full of only marbles.
What are the problems in this scenario?
* The boy hasn’t learned how to fix his problems. His father magically made the problem disappear and took it upon himself to find a solution in a process where the boy had no part in.
* The father spent a lot of time, energy and money to fix the problem his son was facing.
* The boy was deprived of potential creative ways of learning how to play with different objects and missed on creative opportunities to use the cubes either by themselves or alongside the marbles.
* In any similar situations in the future it is more likely for the boy to either expect the challenge to magically disappear or wait for somebody to take the challenge away from him. He hasn’t learned how to deal with his own problems and therefore he hasn’t learned to depend on himself, to be creative and to find solutions for his problems. And if his father’s behaviour is a pattern and not an isolated incident, it could be very possible that the boy is missing out on opportunities to learn valuable and important life skills that could have been very useful to him in future similar situations.
* Even if the boy finds out how his father solved his problem what he has learned is an impractical, complicated and expensive way to solve a simple problem. He has learned a way that is difficult to replicate in the future because it requires tools and abilities he doesn’t have and the help of somebody else he may not always have access to himself.
* Finally, the boy learned that his feelings, judgements and temporary whims are worth money, time and sacrifices and that people should try to accommodate his desires by altering his environment accordingly. In return all he has to do is show his dissatisfaction with a certain situation and the situation will magically change. And again, if his father’s behaviour is a pattern rather than an isolated incident, the boy might slowly but steadily learn to expect other people to honour his every wish and desire by altering the situation, which is not always possible. That is a dangerous lesson to be learned because not only it makes somebody selfish and self-centred, but also it makes him completely unable to solve his own problems and find easy, practical, fast and creative solutions to life’s problems. Finally, by learning to solve his problems in such a radical, and not always possible, way, the boy has learned the way to disappointment, rather than adjustment.
Now imagine the same story, but with a different outcome. The little boy is still given this basket of objects as a gift. He still plays only with the marbles, constantly leaving the cubes in the basket. His father still notices so he goes to him and asks him why he doesn’t include the cubes. The boy still answers: “well, they don’t roll”. So the father sits down with the boy and tries to show him ways to include the cubes in the game. He takes the cubes and makes a wall the marbles have to bring down in their course. Then he makes a tunnel with the cubes the marbles have to go through. The little boy may react negatively. He may not be open to the idea of adjusting his game, at first, he may like the way the game was already played. But if the father persists a little bit and shows enthusiasm and excitement about his wonderful ways of including the cubes in the game, then the little boy is sure to go along and try to explore the new fascinating ways his father is playing his game. Then he starts to play alongside his father this exciting new game. Then something even more amazing happens: the little boy has started inventing new ways of using the cubes in the game. He puts the cubes into two lines and makes a road for the marbles to go through. The father slowly steps away and lets his son play with the marbles and the cubes by himself, whilst the boy constantly invents new and creative ways to use the cubes into his game of marbles.
What has the boy learned?
* How to solve his own problems.
* How to creatively use objects in different ways.
* To entertain other peoples’ perspectives and learn from their ideas and points of view.
* He has expanded his horizon and will now be more willing to include even more different objects in his game (such as pyramid shaped bricks).
* That it doesn’t matter what you have, you can still use it in a way that serves your purpose. You just have to find out how.
The boy in this analogy is our society, who has learned to accommodate people of one certain shape and material. And the father is the people that work with those on the autism spectrum. Some of those people may choose the first approach. Remove the autistic people and only give them their rightful place in society when and if they manage to be in a shape acceptable enough by a world made by others and for others. They will use ways that are difficult, complicated and expensive. And in the end what they will realise is this: you may be able to change a cube, but it’s far more difficult to change a person.
And others, hopefully, are going to choose the alternative approach: they will try to find creative ways of including people on the autism spectrum in today’s society, to find them a purpose and a point that will serve their own individual abilities, talents whilst taking into account their own individual needs, by changing society’s perception on how to use/include people on the autism spectrum. And of course the stubbornness and initial resistance of society to go out of its way to do that is expected but hopefully by seeing the benefits of including people on the autism spectrum and by realising that people on the spectrum are going to be very good at the things they like doing or if they have specific instructions etc., they will be more and more willing to include people on the spectrum because it’s not only for their benefit, but those who include them benefit as well.
And at the end what is learned is this: if the rules get changed, everybody wins. If you manage to learn how to treat a glass object so that it doesn’t get damaged or break, then you automatically have the ability to treat wood well too, so that even wooden marbles won’t get the surface scratches that they do through hard play. If you manage to accommodate the needs of something so radically different such as a square glass cube in a world of wooden marbles, then there’s absolutely no way that you won’t be able to find a way to accommodate the needs of a wooden marble that’s different, but only slightly.
(PS.: I felt necessary to point out that there are many situations in which people on the spectrum are more than capable to advocate for themselves and they don’t need somebody else to advocate for them. That may be where my analogy falls a little short, but I hope my point still comes through.)
* There are two categories of objects in this basket: the marbles and the cubes.
* No, there are two categories in this basket: the glass items and the wooden items.
Who is right? Well, both and neither. Because you can make a third categorization: the glass cubes, the glass marbles and the wooden marbles. And that’s the discussion we’ve been having as an autism community the past few years when it comes to low and high functioning autism: we either categorize according to the shape, so we put all the marbles together, completely disregarding the fact that some people may look neurotypical but are, in fact, very much autistic and as such have an autistic person’s needs (when we don’t recognise the struggles of women on the autism spectrum for example because we have defined the “autistic behaviour” with male standards since we have studied mostly males on the spectrum) or according to the material, so we group all those who are on the autism spectrum together, completely disregarding that they may be of the same material but they will have different needs and be in need of different approaches (as we did in DSM-5, when we took the term “Asperger’s Syndrome” out of the diagnostic manual and now everybody is diagnosed with an “Autism Spectrum Disorder/Condition” which, to somebody without an extensive knowledge on the autism spectrum, sounds like everybody with and ASD/ASC has the same needs).
Now let me take this analogy further. If you see a handful of marbles, one of which is glass, you are going to notice that this marble is made from glass. That is not going to stop you however from treating it like a marble and playing with it the way you would have with the other marbles. But soon enough you realize that you can’t do the same things with this marble that you can with the wooden ones. You can’t, for example, hit it very hard because it more fragile than the wooden ones. You can’t throw it from the first floor and expect it not to break. You can’t dive it in boiling water and expect that you’ll be able to touch it afterwards. In fact there are many things that you can do with a wooden marble that you can’t do with a glass one. But there are also many things that a glass marble can do that a wooden one can’t. A glass marble can change colour according to the light. It can reflect other objects and change their shape and size or perhaps can come into more interesting colours. None is less than the other. They are the same, yet so very different.
Now how about a glass cube? A glass cube would be much more difficult to include in a classic game of marbles. It can’t roll, so it spoils the fun of rolling objects. It may chip easier, because of its corners, so you should be even more careful when you use it. Its corners can be really sharp, so they can potentially hurt you (if you press them hard against your skin for example). That, of course, does not mean that the glass cube is any inferior to the glass or the wooden marbles. It’s just different on another level. Nor does it mean that you can’t include it in a game of marbles at all. You just have to be more creative on how you are going to do that. Instead of making the point of the game being, for example, whose marble is going to go furthest, you can make the point of the game whose marble is going to touch the glass cube first, or go past the glass cube first. The possibilities are endless really, as long as you are set on two facts: a) not all objects have to be enjoyed the same way and b) all of the objects should be included in the game.
The mistake we do as a society is saying “There is absolutely no room for cubes in a society of marbles” and “If you are a marble it doesn’t matter what you are made of, I’ll always treat you as if you are wooden, because you are a marble”. In other words, if you are unlucky enough to have to make other people come out of their way to accommodate your needs you have no value, worth or place in the today’s society. If, on the other hand you fit in just enough to be able to play by rules that are made for wooden marbles, no matter what impact that has not you (since you are made of a much more delicate material), you should play by those rules and put yourself in the risk of breaking. And no wonder that soon enough you are going to crack, or get chipped or even break and then you are going to get thrown away because you won’t have any value anymore. The result is a whole lot of wasted marbles who would have been much more useful if we just changed the rules of the game.
And here comes the other problem those who work with people on the autism spectrum face: having to make the countless efforts and waste huge amounts of both time and money in an effort to roundify the cubes. In other words, those of us who are unlucky enough to be in an obviously different shape suffer through many hours of interventions and approaches and lectures and procedures specifically designed to make them behave like a marble, whereas those of us who are different only in material and not in shape have to go through a lifetime of being expected to have the same properties as a wooden marble and being constantly judged on the fact that we can’t do something that our material is by nature unable to do. And the answer is so simple it’s almost funny:
Yes, it’s a cube. It’s never going to roll. No, it’s not useless.
Yes, it’s a glass marble. No, you can’t throw it from the first floor it’ll break. Try to find other ways to play with it.
In other words, the solution lies only on a change of perception. And what society must finally realise is that perceptions can change: people can’t.
Let me offer a further example of what I mean: Imagine a little boy being given this basket of objects as a gift. Imagine that the boy wanted to play only with the marbles, so he constantly leaves the cubes in the basket and doesn’t include them in the game. His father goes to him and watches him play and notices that he doesn’t include the cubes and asks him why. The boy answers: “well, they don’t roll”. So the father takes the cubes away, gives them to a glass expert and turns them into marbles. Then he gives them back to the boy and now the boy has a basket full of only marbles.
What are the problems in this scenario?
* The boy hasn’t learned how to fix his problems. His father magically made the problem disappear and took it upon himself to find a solution in a process where the boy had no part in.
* The father spent a lot of time, energy and money to fix the problem his son was facing.
* The boy was deprived of potential creative ways of learning how to play with different objects and missed on creative opportunities to use the cubes either by themselves or alongside the marbles.
* In any similar situations in the future it is more likely for the boy to either expect the challenge to magically disappear or wait for somebody to take the challenge away from him. He hasn’t learned how to deal with his own problems and therefore he hasn’t learned to depend on himself, to be creative and to find solutions for his problems. And if his father’s behaviour is a pattern and not an isolated incident, it could be very possible that the boy is missing out on opportunities to learn valuable and important life skills that could have been very useful to him in future similar situations.
* Even if the boy finds out how his father solved his problem what he has learned is an impractical, complicated and expensive way to solve a simple problem. He has learned a way that is difficult to replicate in the future because it requires tools and abilities he doesn’t have and the help of somebody else he may not always have access to himself.
* Finally, the boy learned that his feelings, judgements and temporary whims are worth money, time and sacrifices and that people should try to accommodate his desires by altering his environment accordingly. In return all he has to do is show his dissatisfaction with a certain situation and the situation will magically change. And again, if his father’s behaviour is a pattern rather than an isolated incident, the boy might slowly but steadily learn to expect other people to honour his every wish and desire by altering the situation, which is not always possible. That is a dangerous lesson to be learned because not only it makes somebody selfish and self-centred, but also it makes him completely unable to solve his own problems and find easy, practical, fast and creative solutions to life’s problems. Finally, by learning to solve his problems in such a radical, and not always possible, way, the boy has learned the way to disappointment, rather than adjustment.
Now imagine the same story, but with a different outcome. The little boy is still given this basket of objects as a gift. He still plays only with the marbles, constantly leaving the cubes in the basket. His father still notices so he goes to him and asks him why he doesn’t include the cubes. The boy still answers: “well, they don’t roll”. So the father sits down with the boy and tries to show him ways to include the cubes in the game. He takes the cubes and makes a wall the marbles have to bring down in their course. Then he makes a tunnel with the cubes the marbles have to go through. The little boy may react negatively. He may not be open to the idea of adjusting his game, at first, he may like the way the game was already played. But if the father persists a little bit and shows enthusiasm and excitement about his wonderful ways of including the cubes in the game, then the little boy is sure to go along and try to explore the new fascinating ways his father is playing his game. Then he starts to play alongside his father this exciting new game. Then something even more amazing happens: the little boy has started inventing new ways of using the cubes in the game. He puts the cubes into two lines and makes a road for the marbles to go through. The father slowly steps away and lets his son play with the marbles and the cubes by himself, whilst the boy constantly invents new and creative ways to use the cubes into his game of marbles.
What has the boy learned?
* How to solve his own problems.
* How to creatively use objects in different ways.
* To entertain other peoples’ perspectives and learn from their ideas and points of view.
* He has expanded his horizon and will now be more willing to include even more different objects in his game (such as pyramid shaped bricks).
* That it doesn’t matter what you have, you can still use it in a way that serves your purpose. You just have to find out how.
The boy in this analogy is our society, who has learned to accommodate people of one certain shape and material. And the father is the people that work with those on the autism spectrum. Some of those people may choose the first approach. Remove the autistic people and only give them their rightful place in society when and if they manage to be in a shape acceptable enough by a world made by others and for others. They will use ways that are difficult, complicated and expensive. And in the end what they will realise is this: you may be able to change a cube, but it’s far more difficult to change a person.
And others, hopefully, are going to choose the alternative approach: they will try to find creative ways of including people on the autism spectrum in today’s society, to find them a purpose and a point that will serve their own individual abilities, talents whilst taking into account their own individual needs, by changing society’s perception on how to use/include people on the autism spectrum. And of course the stubbornness and initial resistance of society to go out of its way to do that is expected but hopefully by seeing the benefits of including people on the autism spectrum and by realising that people on the spectrum are going to be very good at the things they like doing or if they have specific instructions etc., they will be more and more willing to include people on the spectrum because it’s not only for their benefit, but those who include them benefit as well.
And at the end what is learned is this: if the rules get changed, everybody wins. If you manage to learn how to treat a glass object so that it doesn’t get damaged or break, then you automatically have the ability to treat wood well too, so that even wooden marbles won’t get the surface scratches that they do through hard play. If you manage to accommodate the needs of something so radically different such as a square glass cube in a world of wooden marbles, then there’s absolutely no way that you won’t be able to find a way to accommodate the needs of a wooden marble that’s different, but only slightly.
(PS.: I felt necessary to point out that there are many situations in which people on the spectrum are more than capable to advocate for themselves and they don’t need somebody else to advocate for them. That may be where my analogy falls a little short, but I hope my point still comes through.)
