3.4. Mansur

3.4.1. Preliminary visit

Mansur, swinging

Mansur trying out a swingset with another autistic child

When Mansur came for a preliminary visit with his mother, he got very irritated because another boy did not want to give him his smartphone to watch online movies. Mansur was apparently “addicted” to “Bakugan” (a cartoon thing for kids).
The other boy was autistic also and was quite “closed” and unwilling to communicate, which certainly was unusual and disturbing for Mansur, who even cried (with tears) for a while (and he said that the boy was not kind to him).
Mansur usually does not speak, but when he needs to explain his problems, he can do it rather correctly, with enough words.
We were in the restaurant room, he was sitting far, at another table, in a very bad mood.
Suddenly, he came directly to my table, sat in front of me, and offered me his two hands, which I took.
(I think that he did this because I usually offer my hand or two hands when I try to communicate with these kids, and I had shown him kindness since he arrived one hour before, and apparently, he already noticed all that).
I asked him very kindly why he did cry, and in fact, it was hard for me not to cry as well, so I told him “if you cry, I will cry too”. (I have a very strong “empathy” – especially when a child is suffering).
His mother was translating, and he told me something like “if you cry also, then you are like me, and you like me”, which was so true and quite moving.
I don’t remember the rest, but finally, he managed to understand alone how to approach the other boy, very slowly and softly, and at the end, he was watching a movie with him (he was trying to be not too much annoying but he had to be close to watch the movie, and the other one was trying to be not too much disturbed by this, which was a “strange situation”, but it worked).

Mansur watching a cartoon movie on the cell phone of another autistic child, after understanding by himself how to approach him more softly

3.4.2. The “spaghettis drama”

The big problem with Mansur was the fact that he “could” eat only spaghettis. Unbelievable but true. He would have refused everything else, and be very upset. However, Zhanat managed to get him used to eat watermelon. I also noticed that, at the end of the camp, sometimes he was watching the other kids eating “other food”, with great interest, like if he was wondering or planning to do it, but he did not. Things take time.

During the first days, many times he refused his plate of spaghettis, quite violently (he was very irritated and shouting). Sometimes even from far, without even tasting.
His explanation was “it is not like mum does”. It was “not like as usual”, he was used to the same thing for years. The problem was that he knew it was not as usual, but he could not describe where was the problem, or what was missing. Then we tried various things. We soon understood that the problem was the lack of butter.
And I even understood the reason, because I noticed that he was doing some “constructions” with the spaghettis (mountains, craters…) before eating, and he seemed happy to do that.

After a little crisis, Mansur tests the consistency of the pasta, after attempts to correct it in the kitchen 🙂
It was necessary to observe him and understand that he does not just eat the pasta: before that, he uses to make some kind of little creations or “sculptures” (or other experiments).

So of course, each time he saw from far that the spaghettis were not shiny, he could remember that the time before, he could not do his “works” (because it was too sticky), and what is the most irritating in such cases is the feeling that no one understands you, that you are not respected, that you are served “normal pasta” like the “normal kids” who can only eat them without any “artistic creation”…
For me, all this was easy to understand, in seconds, because I have similar “manners” (for instance with the milk and chocolate in the morning, when I was still drinking milk – it was very complicated, and when I was served with “normal chocolate” in hotels, it was very irritating because there was no “solid” chocolate inside, then it was impossible for me to do “my usual things” (something like eating and drinking the mix)).
This is an example of how an autistic can be seen as “insane” (he shouts and is upset just by looking at a plate of spaghettis at 2 meters) whereas, in fact, he has his justifications. The fact that these reasons are “unusual” or “not normal” does not mean that they are “bad”. And I think that what was the most irritating for him, was not exactly the pasta problem, but the fact of being repeatedly not understood, treated as “ordinary” by people who don’t even make an effort to understand. It is very very frustrating, and when it is all the time, we can suddenly be very upset for very small details.

3.4.3. The “stretching exercises” story

I wrote the following text, shortly after the facts, in order to be able the understand accurately how “things work”.

This morning, there has been a little difficulty with an autistic child (Mansur) : he did not want to do the morning stretching exercises, for the first time. He was shouting.

– Zhanat brought him (kindly) in a room which did not contain anything distracting (this is important).
– I came and I sat in front of him, seriously, showing that I was concerned and a bit disappointed by his behaviour.
– Since he had some esteem for me (given that I had already understood and helped him several times), he therefore had an attentive attitude.
– I offered my hand and he took it.
– I asked why he did not want to do the exercises.
(Zhanat translated. He speaks, not a lot, but when we insist he manages to say his thoughts with enough details, expressing the key things or problems.)
– He said that he has done these exercises already.
– I understood that he does not see the point (the use of this), so he thinks that it is not logical, “unjust”, even stupid, so he has the “right” to refuse that.
(This is a very classical autistic reasoning, and myself I do the same. I had problems with maths when I was young, because no one showed me that it can be useful, therefore I was “blocked” by my “inner autistic justice”).
– Then I had to find a reason, something logical, useful, to remove this blocking.
– I told him that he has to be strong to be a man later.
– He said that he does not want to be an adult, he prefers to be a child. (And here as well, I could get it, since I was thinking the same at the same age).
– He removed his hand from mine (gently), and he moved away on the bench, 50 cm right. I showed that I accepted his decision (I did nothing to keep him in front of me, nor to ask for his hand).
– Then I took some time thinking, showing that I had a problem with this, and that I did not know how to solve it for now. I was just sincere with him, trying to be “connected” with him.
– We discussed, Zhanat and me, in front of him, in English, which he could not understand, but he could probably feel that the situation was important for us. We were very kind with him. (He was kind too. He speaks by shouting a little only when he says that he does not like something).
– Then while we were talking, he stood up, and explained us that his dream is to drive a car, a nice red car.
(Probably when we mentioned the “adulthood”, this made a connection in his thoughts, about that).
– Me too I made “connections” in my mind, and I immediately said that in order to drive a car, his has to be a man, a strong man, and I showed (shortly) some things with my two arms and shoulders (you know, like when the teenagers want to show their muscles) (I was fully dressed).
– And he started to move his shoulders a little bit like me, like if he was testing, and with an expression of interrogation.
– I saw that he seemed in a “good mood” about that, and I immediately asked him to go in the middle of the room, 1 meter away, and Zhanat understood that I wanted him to start the exercises.
(We did this quickly : it took maybe 10 to 15 seconds before the moment when he started to move his shoulders, and when he started to do the exercises : this, in order to keep his focus on this, and to avoid to allow him the possibility to “decide” (yes or no)).
– Then he did all the exercises very nicely, showed by Zhanat.
(I did it also, to show him that it is normal and good.)
– Then we congratulated him, and I told him that we are glad and proud of him because he is so good in the camp, because he makes some efforts to be adapted and we see improvements every day (which is true) ; and I tried to explain him that this was the reason why we did not want a “fail” or a bad thing with him, given that all the rest was so perfect.
(I don’t know if he understood, because it was rather difficult to explain and to translate, but anyway everyone was happy that he did what he had to do, and it was visible that he was glad too).

In this story, the important thing was that we had to provide him a reason, a *justification* to do what we asked him to do. And we also offered him the possibility to take his own decision to do it, once he had the necessary elements.

When we asked him why he did not want, his position was to say “Why should I do it?”. We had to find a right, fair, true answer.

The autistics are very logical and have a great sense of justice.

This is because I know this (being autistic myself), that I have been able to solve this little problem.

But probably it is not necessary to be autistic to do it, if you try to think and behave like how I did in this example.
To be logical and to “connect” softly to the thought of the child, to try to get HIS point of view.
It’s not that difficult, you have to at least try. Even if you don’t get it right the first time, you try again, and little by little, the results are coming.
The “bad solution” is not to try anything, not to change anything, or, even worse, to “judge” the person (in a negative way, since people do not understand them and since “we are not normal”…).

Finally, on the evening before the departure morning, when his mother and his two little brothers came to pick him in order to go back home, all the other kids did greet and hug him, one after one, and it was visible that he liked it. He was even looking a little bit proud to be considered as someone so important to be greeted by everyone.

3.4.4. The modelling clay (and life at the camp)

He was also very interested in modelling clay, and he started to make his “heroes”: Batman, Superman, and finally… Bakugan!
I noticed that for these 3 characters, he used the 3 “RGB colours” (Red, Green, Blue) which are the primary colours producing the white light (in computers, TVs…).
These details and others were completely in accordance with my theories about “harmony” and “coherence” of the autistic mind, as explained on the 12th of February (conference in Almaty).

Here, Mansur creates 3 “super-heroes”, and I try to talk with him, with the few Russian words that know.
He was probably speaking much better than me in Russian, but anyway his primary language was Kazakh (which is very different from Russian), and in fact my difficulties were useful to reduce the problem of the “superiority” of the adults and/or of the non-autistic persons, that the autistic children can feel, more or less.

He was also hesitating to use yellow (which is the opposite of blue, with which he started).
I would have done exactly the same. (I hate yellow, and I love blue, like many autistics.)
He did not socialize a lot with the other kids, but since he was almost always doing nice creations in modelling clay, I felt that he had the “right” to be quiet, to be left in peace.

Here, Mansur had a problem (I can’t remember which one), and was trying to understand the cause.
You can hear Zhanat (at right) and also, a bit later, the volunteer dedicated to Mansur (at left), who was speaking better in Kazakh (Mansur could understand much better the Kazakh language than the Russian).
He did not want to answer, so I tried another “strategy”: instead of focusing on our questions and a “problem”, I asked to ask him what he would like, what was is current wish.
And he replied that he did not want to answer. So… that was is wish…
And I thought that he had the right to be left in peace, so we left his room, which could show him that he was respected. And this was useful for further relations.
Maybe with a different approach it would have been possible to make him talk and explain his problem.
Indeed, facing 3 persons speaking 3 different languages, and all of them insisting to make him talk, it was too much.

Anyway, it was good for him to be in the group, and little by little he showed more interest in the other kids.
He forgot his Bakugan obsession and even the “heroes” in modelling-clay, and he started to make nice fishes, whales, sharks etc, and even… baby fishes! (copying them from a book)

Here, Mansur started to spontaneously explain some things to me about his fish (or whale) modelling, so I called Adiyar to translate.
Then Mansur was quite cooperative (despite some hesitation) when I asked him questions (which were not always clear enough), and he made an effort to pronounce the syllables of a Russian word correctly.

One day, I was in town, and I decided to buy him more modelling clay (because I noticed he did not have enough of it, and that he had to destroy his nice fishes, to make other ones).
The cheapest pack was also the one with the 4 colours above (that myself I consider as the 4 main “real” colours – all the other colours looking like “second class”) and also black and white.
When I gave him, he was very very happy!
And, since it was inside a bag, he immediately guessed that it was only for him; he said something like “it is for me (only)” and I confirmed.
It is so easy to make an autistic child happy when you understand him…

Happiness! 🙂

In fact, it is easy to realise that since Mansur spent most of his time making creations with modelling clay, it was logical that he should do the same thing with pasta (paste) that can be eaten (in French, we don’t use the word ” clay” in “modelling clay”, but “paste”).
How could we not have understood this earlier?
So, “normal people” see a child “screaming for nothing”, and they think “he’s not normal”, “so he’s not right, there’s something wrong with him”, and then “ah, it’s because he’s autistic, so everything can be explained”, and they don’t look any further: the child is “sick”, it’s a catastrophe, and therapies, treatments, etc. must be found.
But in fact they don’t understand anything, and this is what’s annoying.
That’s why Mansur (or other autistic people) are irritated, in general.
People impose “ordinary” things on us, which completely disregard our particular, often “subtle” needs (as we see here), they don’t understand anything (and often, they don’t try to understand, or not enough, or not with the right approach, that is to say, without “superior judgement”), they only pay attention when we end up getting angry (which is legitimate), but this is usually only to ” condemn “, without trying to find the problem since “the only solution” is “obviously” that we should “do things normally”. ..
It’s all about attitude towards autism: defectological approach, or not.
Instead of thinking that it is the autistic child (or adult) who is stupid, one should start by analysing situations very carefully, and above all without making an initial judgement based on the principle that the person is wrong, because that is what distorts everything and prevents explanations from being found.
This reasoning is not just a “theory”. I’m trying to give some evidence by example here, but all parents (and educators) of autistic people can try it, and they will see that it is appropriate. This requires a certain humility.
But that doesn’t mean letting the child do whatever he wants: like all children in the world, autistic children need education.
But it should not be a kind of thoughtless imposition of normality, which is the best way to make autistic people unhappy. Then there are crises, and we are told that autism is a “psychiatric condition”… But how can you not get depressed and suffer, under such conditions?

Here, I try to show what Mansur does with his spaghettis, but it is not really visible.
Please note that I made these photos and videos more or less “at random”, when I had the opportunity. I wasn’t there to do a reportage (which would have been very interesting), so there is a lot missing in what I recorded. But the volunteers also took photos and videos.
The important thing was to notice these “peculiarities” before the crisis, i.e. when the problem did not exist.
And it is obvious that autistic people are particularly good at noticing “small differences”.

Getting back to the “issue of the pasta” (to eat or to shape), this analysis and this reflection can bring a lot.
First of all, by avoiding ” the dramas of lack of butter ” 🙂
But also, we could mix vegetables very finely and mingle them with pasta, or even make pasta at home containing vegetable powder, separating the colours, and offer him for example 3 bowls of pasta of 3 different colours (yellow, green, orange) by asking him gently if he can make a castle or something else on his plate, before eating (and take a photo for each successful creation). The idea would be that he should use several colours. And of course, that he eats everything afterwards.

(Concerning pasta, i.e. cooked wheat, there is often a problem with the gluten, which is not the subject of this text but I could explain. In summary, cooked things are not healthy: again, things are simple. And there are solutions, very simple and very cheap).

Finally, we can reasonably assume that Mansur is a “builder” (and he is obviously very intelligent), so why not think with him about jobs like architect or in the field of construction or at least creation…)

All this would be quite different from the brutal judgement “He screams when he sees pasta, when it’s the only thing he wants to eat, so he’s crazy, which is logical since he’s autistic…”.
It is clear from this example that this thoughtless approach is completely wrong.
And that with a “correct consideration of autism”, everything can be seen in a very different, positive, constructive way, where problems can be solved more or less easily.
In my opinion, the “wrong approach to autism” is like using a telescope from the wrong side, and declaring – without questioning oneself – that it does not work, that it is “defective”…

Every day he was a little more relaxed and open.
He probably felt that he was respected, and so he had no reason to be “closed” to people who were kind and who respected his peculiarities and his freedom (especially when it came to modelling clay, or when he just didn’t feel like being questioned or chatting).
In this video, he even makes an effort to pronounce a word correctly in Russian.

Here, I have no idea about what he was saying (especially if it was in Kazakh language…) but apparently it was a sort of game for him, and it was funny.
Behind him, Adiyar (see further) was laughing too.
At least, Mansur was happy 🙂