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Following the Almaty Autism Speech conference and various discussions in February 2016, the Pioneer Mountain Resort invited the Founder of the Autistan Diplomatic Organisation to participate in the inclusive summer camp as a volunteer (unpaid) ‘autism counsellor’, which was gladly accepted.
After his stay, he produced the following report.
”A fruitful and coherent
‘autistic summer’ in Kazakhstan”
Report about my stay and participation at
Pioneer Mountain Resort inclusive summer-camp
in Almaty (Kazakhstan) in July and August 2016
”A fruitful and coherent
‘autistic summer’ in Kazakhstan”
Report about my stay and my participation at the
Pioneer Mountain Resort inclusive summer-camp
in Almaty (Kazakhstan) in July and August 2016
1- About Autism
Autism is not a disease, but a natural difference.
The autistic persons have a more personal, original and unique life experience.
In today’s sophisticated, hyper-connected hyper-social systems, the autistics are suffering.
Their unusual behaviours are perceived as “troubles”, and when people try to interact with them or to help them, too much often they do it without understanding the autistic thoughts, or -worse- they believe that anyway, these are wrong or even sick (or crazy etc.), which makes that the autistics are “aggressed” and irritated (which is also perceived as “troubles”, given that the non-autistic persons do not understand the “mechanisms”, and that they don’t think that they should try to do so).
For centuries (and probably much more), there have been autistic inventors and artists and great original “thinkers”, who enriched society.
Normality and “social copy-pasting” does not improve Mankind, but leads to the loss of its humaneness.
2- The needs of the autistics
That the social environment takes autism into account correctly
When placed in a social environment (including buildings or other social creations which are not taking autism into account correctly), the autistics will usually suffer from many harmful details or inconsistencies which are “aggressing” their special sensitivity and sensibility. This is done through the neurological system (which manages the “interfaces” between the mind and the body, and between the body and the rest of the world) ; that is why autism is often perceived as “neurological”.
The inconsistency, nonsense, ugliness, sensory aggressions and other painful “details” are not perceived (and thus, not understood) by the non-autistics, because their neurological system and their thinking system is “approximative”, and conditioned since early childhood to “accept” or to “believe” and to make “arrangements” with things which are not true, or which are harmful.
That is why they do not have the “reflex” to try to improve the artificial systems and environments that they create, to find the correct compromises for the most sensitive and fragile persons, which would be easy to do and which would be beneficial also for them (like for example in the case of insane overheating in winter, or of an air-conditioning set to 18°C when it is 40°C outside, which is stupid and absurd, but extremely common).
For instance, no need to be autistic to “suffer” from stupid forms (documents) or regulations; but for the autistics, it is even worse: anything seen as “incoherent” or “unjust” or “not true” will be automatically rejected by us, which generally excludes us from society, generating a “handicap” (because of the fact of being more “straight” than the “normal” people) or a “disability” (being “unable” to take lies for truths, or to see that an apple is obviously the symbol of a computer because it is the symbol of a city, etc.).
Being the first ones to suffer from the defects of the “vague”, “lazy” and often “perverted” non-autistic systems, the autistic persons can be seen as the “warning lights” of a global social system which is proving every day a little bit more to be “sick” and dangerous (illusion, wars, terrorism, destroying the planet etc.).
To learn how to manage the “non-autistic” (social) manners
“In a perfect world”, the autistics would be left in peace, and respected, like you respect a blind person when you see a white walking stick, without thinking that she is “sick” and without daring to judge her inner spiritual life. Indeed, after all, why should we be forced to be “social” and to “communicate” all the time, like “social machines” ?…
But in today’s world, the “social dictatorship” and the “normalitarism” are so strong and everywhere, that our sufferings are way too much and that we need to do, by ourselves, a “minimal adaptation”, we need to learn the basics of the non-autistic manners and “tricks”, in order to avoid being victims, and in order to find a place inside this “super-social” society, or at least a place somewhere at the border, like I did.
That is why it is indispensable to “learn non-autism”, like learning a second language.
To have our autistic peculiarities respected, and our special qualities encouraged
But when an autistic learns non-autism, he (or she) should not get a “brainwash” that would try to “erase” his (her) autistic characteristics. Like when you learn English, you don’t have to “forget” your native language, which remains useful “in your own world” (your country), and which is closer to your “real you”.
Simply because he is different and “original” (“very unique”), any autistic has “special qualities” which are his personal strengths and which should be found and developed, instead of having them being mocked and deterred.
It is possible to find the right balance between “minimal social adaptation”, and “keeping and respecting one’s own autistic special personality and mindset”. Like some people are bilingual.
3- About the Autistic Alliance
I created this concept last year, after noticing that the social relations are much “polluted” and not enough efficient, even when people are of goodwill, because of a very big problem: the “non-understanding”, problem which is due to the fact that people are sticking to “little social boxes” and too much afraid to explore other “boxes”.
This problem is affecting :
– The different non-autistics groups between themselves (see the conflicts and wars and destructions and all the other stupidities) ;
– The persons who want to help the autistics (especially if they believe that the “autistic thoughts” are “sick”, which makes that they will never even want to try to understand them) ;
– And even most of the autistics themselves, because in general they live “in their bubble” and they don’t even wish to be involved in the “surrounding mess”.
I think that not only I am “autistic” but also I have an additional special capability allowing me to “travel” between the countries, the “social boxes”, the mindsets, etc. (Maybe this is just a form of “courage”.)
It is not difficult for me to understand non-autistics and autistics (in most cases), so why not doing something useful, trying to make “bridges” and reduce misunderstandings, confusions, exclusions and unnecessary sufferings?
So the idea is to find other autistics like me, and also, of course, all kinds of non-autistic persons who want to try the experience of being advised by autistics, in order to “do better” with the autistic population.
This is the main goal, but I think also that the “free spirits” like me can be useful to help non-autistic groups to understand themselves together. In fact, it is easy for me, because I do not belong to any of these groups, so I can remain unbiased and realistic. And I can see the “artificial social layers” in which they are “glued”, and that they cannot see. This could be a secondary goal for the Autistic Alliance.
So, since last year, I travel the world and collaborate with various autism organizations.
This is how, after being invited to Russia to explain how I managed to overcome many of my “autistic problems”, I got in touch with the parents’ organization “Ashyk Alem” in Almaty, the economic capital of Kazakhstan, and then, with the Pioneer Mountain Resort.
4- February 2016 in Almaty
Zhanna Karatay, one of the co-founders of Ashyk Alem, is the mother of an autistic boy, Alibek, who was awarded by an autism organization in Canada last year.
He was a non-verbal autistic for several years, but she managed to provide him with a “successful education”, for instance by involving him in many activities and travels, with “normal” children, and by allowing him to fulfil his passions (he makes short movies with modelling-clay characters, and I find them really impressive and nice (and funny)).
In Canada, she saw a positive image of autism.
So when I met her and I explained my vision about autism and how I succeeded also, with my own way, she was not hard to convince and she knew I was right; she heard me saying things that she suspected but did not dare to really think before; it became very obvious that there are other ways to consider autism, than the usual “disease” or “tragedy” beliefs or concepts.
She invited me to her little mountain resort close to Almaty city, called “Pioneer Mountain Resort”, and I experimented with skiing.
I wrote a little text describing the benefits of this experience, as an autistic :
“My stay at the Pioneer ski resort was a very interesting and useful experience.
And recently, I found that I learnt another lesson on this occasion :
Ski and difficult things :
If you allow the fear and negative thoughts, then you are disturbed by them, then you cannot focus enough on the thing to do, and you fail, or fall.
I had to fully adapt (without focusing on other things), otherwise, I would fall.
If I focused on the idea “I cannot do it, I will fall, for sure”, then sooner or later I would fall, because in this very difficult situation (gliding fast, with “surprises”), my mind cannot control my body fast enough.
I think that this “principle” works for many things: if you really believe that you cannot do something, then how can you order your body (or your intellect) to do it? The connections won’t be created, it is like if there is a “bad noise” ruining the coherence of the “information” (the neurological signals).
On the 12th February 2016, Zhanna organized a conference for me (I was the only speaker), where I could explain my vision of autism, which is very different from the “usual theories”.
It was the first time I could talk really seriously (maybe too much) in a real conference about autism, to people concerned by autism (before that, I talked at the UN, WHO, such things, not specialized in autism).
There were not so many people, maybe because the parents here are not used to see autistics explaining autism, and they don’t believe it is possible, or maybe they think it cannot be really serious.
If they think that autism is a disease, then “an autistic person doing a presentation” probably sounds like a “bad joke”.
And there were some “professionals” who left the conference shortly after I started, apparently because I was not “looking autistic” (and/or because they did not like what I said).
The stereotypes are hard to fight. But anyway we need to try, and to start with something.
Unfortunately, the “medical beliefs” are still poisoning autism, preventing the parents to access a true understanding of autism.
Anyway, this conference was very important and useful for me, because it allowed me to publish my thoughts and theories about autism (which are very different from the usual concepts), so anyone can read it (even though I never heard any feedback about my 100 mn text, like if no one was interested (or “able to read”), which is really a pity because so many people want to understand autism and here they have a chance to do it… but probably this lack of interest is “normal”…).
After Kazakhstan in February 2016, I made presentations and meetings in other countries (like the Emirates, or Nepal), which were less theoretical, more adapted and more appreciated by parents.
I had decided not to come back to my country (France), because of all the social and political nonsense there, in autism but not only.
Zhanna had invited me as an autistic counselor to her summer camp, and I accepted.
I left Kathmandu on June 27 to make a presentation (on altruism and autism) at the United Nations in Geneva, in a forum on volunteering, on the 29th.
On the 30th I returned to Almaty and the first “season” with the children started the next day.
5- Concept of summer camp
At first, rather experimental
At the begining, I didn’t really have a plan; I just relied on my good understanding of the deep nature of autism and on my personal life experience to deal with the situations as an autistic person.
We also used “natural common sense”, and of course we weren’t influenced by the usual “disease” approach, and this was certainly the most important point, the necessary “state of mind” to have.
After a few days, we understood the following important things.
Awareness of other children
For the first 10 days “season”, I did not explain anything to the group of about 20 children, regarding the presence of 2 “special children” (because I had just arrived, so I didn’t was not yet prepared).
There was no problem, thanks to the general atmosphere of “acceptance” (inclusiveness), but a “normal” boy told us, about an autistic child, that “he is crazy”.
For the other seasons, we had a little meeting with the “normal” children, shortly after their arrival (every 11 days), and I told them the following things:
There are “special children” among you; they are not crazy, they are not sick: they are just autistic, they are “different”;
Please don’t make fun of them (I insisted on this); please be kind to them;
They live “in their world”; they need to learn how to live within a group, they need to like it, so please don’t reject them;
(When I said these things, I could notice that some children were looking around, trying to see where these “special children” were, and I had a feeling that they were kindly willing to help them.)
Be with them as you are with any other child, so if they don’t feel like you are “putting up barriers” they will interact with you more easily;
If there is any question or problem, don’t worry, immediately ask the instructors, the manager or myself.
(Of course, this was all translated into Russian.)
I think that this very simple information makes all the difference, and is one of the most important component of the “recipe” of the success that we could notice in this summer-camp.
Not only there were no kids coming to complain, and very few questions, but they simply lived their “children life” naturally, without thinking too much about stories of “normal kids” and “special kids”.
The main point is that, given that they were aware and warned about the possible “special behaviours” of some kids (which obviously occurred), then they were not surprised, they did not have to wonder “what is going on ?”, and to be afraid, or to react in a negative manner (like rejection).
Indeed, such situations were presented as “already managed” by someone else, a sort of “authority” (the staff), so, why would they have to bother ?
They were not “left alone facing the unknown”: autism was taken into account at that summer-camp, and it makes a HUGE difference with places or situations where autism is “non-managed” and, therefore, immediately looks like a problem.
Hence, given that they were clearly told that we are well aware about these boys and about autism (and that there was even a special “autistic advisor” for that), they did not have to be scared ; they could see that we were handling the difficulties as “business as usual”, so in conclusion all was ok for them.
So the result is that the special kids were feeling much more at ease in the group, not rejected, not looked at as “weird”, unlike usually. The autistics are very sensitive and can often feel the “bad thoughts” about them, which of course prevents them from attempting to socialize.
If the special kids had been placed in “non-inclusive” groups (about autism), there would have been problems very quickly, the “normal kids” would have put some distances and barriers, and the special ones would have remained completely “in their world”, as usual.
Instead of that, we could see that the autistic children were “opening” little by little, with more interactions, more interest, more “presence” in their eyes.
And if the special kids have been placed in “special centers” or “special summer camps for disabled”, they would not have experienced a “normal life with normal people” in the camp.
Maybe the staff would have taught them some things, but it is much more efficient to learn things naturally. Especially given that the autistics have problems with abstraction, and they understand much better with concrete examples.
It is impossible to “learn the social codes” (through practice) when you are surrounded only by special children who do not know these codes.
And also, when a kid is in those “special places”, he can feel that he is not accepted in the “normal places”, and this is a problem, especially for his self-esteem and for the attempts to have him appreciating the “normal groups” (given that they don’t like him).
Treating “like normal children” (as much as possible)
We tried as much as possible to have the autistics participating in all the numerous activities, showing them that we considered that they can do it, and that “they are essentially like the others kids”.
Instead of thinking that “they cannot do it”.
It is not that “they cannot do it”, but that it is much more difficult for them, it takes more time and efforts. But not impossible. And also we have to teach them in a few days what the others learnt for years, so of course it is difficult.
Instead of thinking “he cannot sit straight” or “he cannot bring the tea, it will fall, etc.”, we TRIED to have them do it, and after some efforts, we could see that in fact they can do the things. But they don’t learn at the “normal” speed or with the “normal manners” : maybe that is why, usually, the “normal” educators are concluding to those “inabilities”…
In fact, it seems more like an “inability to teach specially for the special children”, than a so-called “inability” or “disability” which would be inherent to autistics, and make the autistics “inferior”.
We offered them to do almost all the “normal” social / group things, without thinking too much about “he can / he cannot”, and we could see that, when “caught in the general group dynamics”, in fact the
autistics were slowly and naturally copying and learning and starting to do like the others. More or less slowly, but I could see progresses everyday.
Obviously, if you decide that “they cannot” and that they are sick and that they should be separated from the natural environment where they can learn, it cannot work, for sure.
When there were “troubles”, we addressed them as “difficulties” or “special needs”, and not as “problems” or “defects” or “disabilities”.
We were also careful about respecting their autism and their need to “withdraw” sometimes (instead of forcing them to always be or look “normal”).
They had the freedom to be different, to be themselves, and not to play a role in order to be accepted.
It is important to “force kindly”, but not too much.
To find the right balance.
“Treating totally normally” without autism awareness and accommodations would lead to disasters, and that is why usually the autistics are rejected from the “normal places” schools etc.
“Treating totally specially” cannot help them to behave normally (I write *to behave* normally, and not *become* normal).
It is important to accept and respect our differences and not to force us to be “normal” as a condition for accepting us.
It is also important to help us to behave with manners more acceptable by the group.
It is a matter of reciprocal, fair adaptation, which should be done as much as possible in every day life.
Awareness of the staff
Of course it is necessary that everyone in the staff is aware about the presence of the special kids, and has some basic notions about what to do and not to do. At least, they should not look at the autistics as “weird kids” because this could stress them and “put bad vibes in the alchemy”.
The most important is to make a little “training” of the instructors (the young volunteers), to explain them some things about autistics, and to discuss about each individual autistic case.
When they had questions, when sometimes it was difficult to analyse the behaviour of an autistic kid, they came to ask me. Many times I could find the explanations and how to address the situation, how to solve problems or how to do to avoid to repeat them. Sometimes I could not find the explanations to some behaviours, but they were only “unusual behaviours” and not really “problems”.
Importance of the advices of an autistic person who managed to overcome many difficulties
During almost all the day, I was working with my computer (mostly about the Autistan concept, the Flag, websites…) in the restaurant room, and I did not spend so much time in “advising”, maybe one hour per day on average, but the little that I did was very useful, because I could understand rather deeply (almost always) the behaviours and difficulties of these autistic kids, by making comparisons and links with my own autistic life, and with what I see as the essence of autism.
Being autistic (even mildy), I know the importance of “little details” which look completely unimportant for the non-autistics (who don’t even see them), but not for us.
It is of course very important and useful to have the explanations and advices of an autistic to understand the autistics.
For instance, I explained that it is very important to respect the special interests of the autistics, their own “inner world”, their right to be alone, to “withdraw” when they need. But that it is necessary to find a correct “balance” or “trade-off” : they should not be all the time “in their world”, otherwise, they would not benefit from the camp.
And I also found a way to know what is a “good special interest”, and a “bad special interest” : it is very simple ; I think that when the child is into a creative, building or learning process, it is good ; and when it is only “consumption” (watching TV, laziness…), it is bad. This way we know that if an autistic kid is obsessed by some cartoons, we should not just say “let’s respect his special interest”.
But sometimes it’s not so easy : if he is obsessed by movies about trains or insects, no one knows if it is not good for his future (for his job etc.).
Importance of a successful parent’s experience
This concept works well also because the owner and director, Zhanat, is the mother of an autistic child, and she managed to give him the right education : he was non verbal but he can speak a lot now, he recently entered the College of Fine Arts. And also this family respected his “special interests” (called “narrow interests” by medicine) so he could develop them, and he does now wonderful creations with modeling-clay.
So she has the “know-how” ; sometimes she corrected or improved my ideas, given that she has a parent’s experience that I do not have.
And she knows how indispensable “inclusiveness” is, since this is the key of success for her son.
And it is also the key in my case, and, in fact, for all the other cases of “successful integration” that I know. Indeed, I have never heard about an autistic having learnt (successfully) in a special center or in a hospital how to “be integrated in the normal society” and to “behave adequately”.
Granted, there are some cases (some children) who are more “difficult” and who need, at the beginning, some special education without which they could not be able to come even in inclusive summer camps (or other inclusive concepts), but this is only about learning some basics, when necessary, and this is not enough.
Everyone has the right to a free life, without being forced to go only to a few pre-designated places, which are “artificial” and far from the “enjoyable life”. All this is unfair and counter-productive.
The biggest problem is not our so-called “disability”, but the lack of understanding and acceptance by the mainstream society, due to fear and ignorance.
Natural environment and altitude
I noticed also that the natural mountain environment was very beneficial for all the kids, especially when trekking in the mountain. Myself I was feeling very well, the air was good (at an altitude of 2000 m), it was rarely too hot, I was calm (almost always).
Given that the autistic mind is annoyed and “polluted” by the artificial things (which are not coherent, not harmonious, thus “anti-natural” thus “anti-autistic”), then the autistics are less disturbed and irritated in such natural places, and it seems to participate to the success.
In fact, all that “successful slow integration” happened naturally, quite spontaneously, and easily.
I don’t know if it would be so easy in the city or in crowded places.
I also noticed that when the autistics were doing physical efforts, like long treks, they were less “in their world”, and more “present” (“with us”), which is easy to understand given that the body “asks” for more attention. The fact of experiencing the same physical difficulties as the others in the mountain, and the need to be autonomous and sometimes “brave” (for instance, to walk back to the camp when you are very tired) forces the kids to some kind of “solidarity feeling” and also to face the natural reality as it is really, and not as one thinks it is.
Not “the unique special kid”
It was good also that there was always more than one autistic in each season, because usually these kids are the only autistics in their environment, so they may feel that they are “strange”, “weird”, like “errors”, etc. (and anyway, people tell them that).
But when they see other kids more or less like them, they can understand (or feel) that they are not “exceptions” or “problems”.
And also they may have friendly relations between autistics, which are very different from the relations with non-autistics. So they can experience two different kind of interactions. Not to mention the interactions with the young instructors.
I think that for most of these autistic kids this stay in the summer-camp was the first time they were accepted in a “normal group” ; it was easy to see that they enjoyed it and that it was very useful for their “adaptation”. At the end of the seasons, they were much more looking like the others.
There was like some kind of “magic”, like if the fact of treating them “naturally normally” did produce “naturally and spontaneously” the expected result.
But I believe that this “special reaction” (like a chemical reaction), which may be sometimes like a “shock therapy”, can work only when the children are totally removed from their usual environment, without the “old habits”, and without the family or anything that they know.
Like when you go on holidays abroad you can do many things that you would never do or even think in your “usual life”.
So we offered them the “experience / example of a different life, of a new life”, and we showed them that many things are possible.
But most of all, we showed this also to the parents (thanks to the photos and videos), showing them that it IS possible to change, but if they don’t change their habits and education (or lack of education…), then nothing will change for their kids. Or very very slowly.
6- Cases (and sometimes “little miracles”)
He came with his aunt and she was very depressed at the beginning, about his future etc.
In fact there was no problem with this boy. He is “different”, for sure, but he can manage to do his own life with his own way. He even surprised me, when we went in the city one day, by managing to convince an employee of a recreational equipment to let him enter without paying (he was alone with me, since a few minutes). Even his aunt has been astonished (she arrived later).
When you stop to consider that people are “deficient” and to treat them “accordingly”, then the good surprises can start…
At first, his aunt was thinking only about things like “disease” and “shame”.
But during the camp she changed her mindset completely, by seeing her nephew under a new angle, by seeing the other autistic kids and their progresses, by seeing the qualities of Arsen, by seeing also my own example, and the example of Adiyar (read further).
The biggest problem of Arsen is -not surprisingly- the stupid mocking and bullying behaviour of the other kids at school. I tried to do my best to explain him that he shouldn’t pay attention to all that, and how he can avoid to be a victim of the judgement of others (especially if they are stupid…), by simply understanding that such judgements are worthless and thus that they can and should be ignored.
I don’t know if he really got it (he is young) but his aunt certainly did, and I trust that things will go better for this family.
He was also very happy to play with Arthur (and vice-versa).
It was nice to see these “two autistic friends” enjoying life, the summer, swinging, laughing together.
If Arsen or Arthur had been the only autistic child around, probably he would have felt lonely or “like a black sheep”, as I explained above. And also if there had been only autistics in the camp (and, why not, nurses… (to give medicines ! which were not even “thinkable” with us)) then the atmosphere would have been less fun, and rather stressful: it would have been the usual segregated and “defectological” approach, and it is so easy to understand that it cannot work…
How would children (or adults) thrive in this kind of environment? It doesn’t make sense.
You have to let things happen naturally, respect the nature of the person, which does not prevent from educating, but educating without “formatting”.
And recently we were told that Arsen wants to come back next year. He is right !
Indeed, it is easy to understand that for a child who is usually rejected and mocked, this 10-day stay where he was neither rejected nor even “ostensibly accepted” but simply free to be himself, and in addition to having friends, was almost “heavenly” (with the added bonus of the whole natural environment, perfectly consistent with our natural approach, or vice versa).
At first, Arthur came for only one afternoon, because his parents thought that “he cannot” stay the night.
He was talking all the time, about all his thoughts. It was like if he was dreaming all the time, and commenting on his dreams. Sometimes there were some links with the reality (the reality that we could see), but many times it was impossible to “follow him”. He was also very hyperactive, and we had to hold him by the hand when walking together in the valley, otherwise, he would run away very fast and far. At the end of the day, he seemed to have enjoyed but he said that he did not want to sleep here.
I suggested the following “deal”: if he wanted to come back, we would accept it, but at the condition that he spends the night (which means that his possible next stay would last 2 days).
Not only he came back on the next day and spent the night, but he spent also all the rest of that 10 days “season” with us… And we could see that, little by little, what he was saying was more “adapted” and meaningful. And he was much less agitated, much less “always running”.
I think that, for him, not only the “general acceptance” and “kind understanding” of the camp was good to “calm” him and to make him “synchronize” better with “the Earth”, but also the nature and the purity of air were very beneficial (as it was for all of us).
As said above, I could feel that it was good for me also (usually I can be irritated very easily).
But the best of all is that Arthur came back again a second time, two “seasons” later, and that he spent that whole “season” (10 days). He was behaving rather “normally”, and in fact, I barely had to pay attention to him during this second stay.
Sometimes he was talking too much or too loud, but the staff and even the other kids were dealing with that, by kindly remind him, and each time he could calm down very quickly and without any problem.
I also noticed that the kids were sometimes discussing with him, and that did not look like “nonsense” like during the first days (otherwise they would not discuss).
This was also a result of the “awareness initial information” that I described, which I do really believe is one of the keys of success (and it takes only a few minutes). (Without this, during the first season, it was Arthur who had been described as “crazy” by another kid.)
So in conclusion, concerning Artur, that child who at the beginning was running around talking about butterflies and incomprehensible things, who “couldn’t” spend the night here, and who was seen as a “lunatic” by the other children, when we realize that he finally spent two whole stays without any problems, and that towards the end he was hardly noticed and had rather serious and calm discussions with the other children, who appreciated him, I believe that we can call it a “success”.
It’s so simple: you just need to stop thinking of autistic persons as “sick”, and give ourselves chances, instead of always being “overprotective” and believing that we “cannot” do this or that.
Of course things can be difficult at first.
But even if it takes 10 times or 100 times more effort to do some things “like the others” (which is not always desirable, but that’s another discussion…), it doesn’t mean that it’s “impossible”: it’s “only difficult”.
But if you never try, then yes, it is impossible.
When Vladimir arrived for a first preliminary visit with his parents, he was very shy and “scared”, and even saying/shouting something like “aaaaaaaa, aaaaaaaaaaa” all the time during the first minutes. I thought “Oh my God…” (“It will be difficult…”).
When he finally came to spend the 10-day season, he started to play rather quickly with the other kids and the instructors, especially with the ball.
After some days, I finally noticed that instead of sending the ball where it was supposed to go, he was sending it in places difficult to access, and laughing. The instructors were believing that he was a bit “stupid” (because of his autism), or “unable” to play correctly.
But I remember him watching other kids playing with a frisbee (flying disc) and laughing a lot, each time the disc was sent to difficult places, forcing someone to climb a wall etc.
So I immediately understood that in fact he was not playing with the ball… but with the instructors ! (Which I can understand, because it is obviously much more funny that putting a ball in a hole, and, as an autistic, he does not (yet) understand that it is not fair for the instructors.)
So I explained that to the instructors, and they changed their point of view, and each time he was sending the ball in difficult places, he had to go there by himself to retrieve it…
Soon after, he was playing correctly…
This is a simple example of the very numerous cases where “normal people” think that *we* do not understand, whereas it is *themselves* who don’t understand.
Apart from that, I did not really approach him, because I thought that I had to go very slowly and cautiously with him, to gain his trust. A few days before the end, I started an experience with him, being alone in a room (with Adiyar as a translator), without anything to “disturb”, and trying to “communicate” better with him. But probably the conditions were not “good enough”, or at least one of the 3 persons was not in the proper “mood”, so it did not yield significant results. We could only notice that his only two very clear answers were when we asked “do you want us to sit more far” (yes) and “what do you want to do” (go outside). Then, only when he was motivated, and when the questions were not too much “abstract” (for instance we could talk about the colours of our clothes, but much less about “what he likes in general” – this is typical of autism : most of us (including me) like the “concrete” and “clearly useful”).
This boy is very logical (which is “normal” for an autistic) and I did not think enough about a justification to bring him in this situation, this room.
However, I noticed that during all the rest of the stay, he was greeting me all the time (“paka, paka !” ), and one day he even came directly to sit close to me, at my table.
So I regretted to have been so slow and cautious with him.
But anyway he really loved the camp, and I even saw him dancing (and dancing well) during the “night-club” sessions, and… I’ve even heard about some (very “innocent”) kisses with some girls ! 😉
So, for sure it was a very nice vacation for him, he liked to be with the other children, and not to be treated like “sick”.
I am very glad to contribute to make these kids happy, and, as much as possible, to help them and their families to find “the right paths”.
However, as I finalise this report (much later), thinking back on Vladimir I almost feel a little “guilty” (even though I had no obligation).
Indeed, he was the boy for whom I saw the least results (apart from the fact that he was happy with the stay), and I think that I should have spent much more time for him, and that it would have led to a significant change (as we saw with the others).
But I was actually very focused on my computer with the plans for Autistan, and since the stays were going well, and the instructors and staff clearly understood the little that was needed to be understood and were applying it (a matter of attitude), I didn’t actually need to do much, in general. I was more or less monitoring the whole thing a bit “from afar” (from Autistan..), and I was there to give help and advice if there were any difficulties or questions, which happened, and which went well.
I should have forced myself to limit my time in front of the computer, and to set a minimum number of hours for the children, and in meetings with the instructors.
But when there is so much to do (projects for Autistan or to help autistic people in the world in general), one deals with what seems most urgent or important, and this prevented me from seeing that it would have been useful to take more time for Vladimir.
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 very “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).
He 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 and compassion 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).
The “spaghettis dramas” :
One of the big problems 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.
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.
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).
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.
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)
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…
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?
Getting back to Mansur and 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”…
Now, the “exercises story” (still with Mansur) : (I found it so interesting that I wrote this text, right after it happened)
20160729 KZ PioneerSummerCamp – Example of solving a problematic situation with a 9 y.o. autistic child.
This morning, there has been a little difficulty with an autistic child : he did not want to do the morning stretching exercises, for the first time. He was shouting.
– Zhanna 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.
(Zhanna 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, Zhanna 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 Zhanna 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 Zhanna.
(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.
The case of Bekzat, which seemed easy at first, was in fact maybe the most difficult, but maybe also the most rewarding.
He was extremely lazy, spending all his time laying on the hammock or other comfortable places, like a very big cushion.
He had also an overweight problem, and he was “in his world”, not communicating, interested only by being laid down (or, at best, sitting) with his rhinoceros (a toy) always in his hand, as such point that it looked like a prosthesis…
After 2 or 3 days like that, I had a sudden “inspiration”: the fact that it could not continue like that, that the summer camp was not useful at all for him in these conditions, that if nothing changed in his life then he would have a very unhappy life, worsened by the fact that he would be very fat (therefore, rejected also for this reason); so for me, it was obvious that we had to try to do something to change that.
So Zhanat called his parents, and after some hesitation, in view of the whole, of the apparent results for the other children, in view of our apparent skills, of our self-confidence, they decided to trust us. And that is exactly what had to be done (and which, unfortunately, very, very few parents agree to do).
(You will see later that they did not regret it.)
So his parents gave us the necessary rights in order to “shake” him, but they were very anxious about being too much tough with him, fearing that it might make him “worse” or “crazy”.
This is what his mother explained to me on the first day: “We are afraid of changing anything, because we fear that, doing so, maybe he would become *completely* mad”. (She was already considering that is was “mad”.)
And me, as an autistic, with all I learnt in my autistic life, I felt that the “big change” was the right thing to do, that if nothing changed around him then he would not change; and also I thought that his stay in the summer camp, far from his habits, was the perfect place and time for that.
So we came in the common room, where he was laid as usual on his big pillow, playing with his rhinoceros, and we asked him to come with us, which he refused, of course.
I defend the right for the autistics to be able to have “peace”, “withdrawal”, and a “refuge” when they need it. But this should not be 100% of the time (unless maybe when the autistic person is obviously involved in a creative process, which was not the case with this 3-days “rhinoceros-handed laziness”).
Usually, in the summer camp I was only advising and talking, but this time I had to help physically the volunteers (the young instructors).
The principle was that sometimes the kids have to respect the orders, for instance when asked to leave a place (whatever the reason) and that, of course they are on holiday and they have the right to freedom and fun, but they cannot do only just what they want all the time.
We told him several times that if he does not come by himself, we would have to oblige him by force. We knew that he could understand that, but -as expected- it had no effect.
“The big wake-up”:
Then the “big change” (of his young life) started.
We took him by the arms and legs, and he immediately started to shout and to violently try to liberate himself, but my idea was to show him that “it does not work anymore” (that “the time of being shouting and being violent to obtain something was over”).
So we had to be very determined and strong, and to never give up.
We brought him in another room, but we had to permanently hold him, since he was trying to escape and to go back to the first place. Sometimes he even gave some kicks with his feet, and punched us strongly with his fists.
When he was punching me, I was forcing myself to laugh, and I even offered my arm to punch more (which he did) and I laughed even more. In fact it was painful, but I wanted to show him “it does not work, you will have to accept, you cannot do just only what you want all the time”, and also I was aware that my strange reaction would participate to “shake” him mentally, which was necessary to “rearrange things” differently.
Zhanat came, and he tried to beat her also, but he did not continue for long, because she did not allow him to do that.
So he was rather puzzled because his attempts were not fruitful at all: shouting was not producing the desired effect (of leaving him alone) and physical violence wasn’t useful neither.
We realized that this boy was used to do only what he wanted in life (which was a problem because it was only laziness) and that his “tools” for that were :
– shouting (because sooner or later there would be a problem with the social environment (neighbours) so his family would have to find any solution to have him stopping shouting, i.e., in this case, by providing what he wanted) (later on, his father confirmed my theory, by explaining that they had to move to a house far from any neighbour) ;
– and physical violence, in case the verbal violence was not enough.
We found that here at the summer-camp it was the perfect situation to try to “break” this very bad system, and to show him that “it does not work anymore, it’s over” and even “you have to wake up to a new life”.
Indeed, we were very determined not to give up (otherwise he would have won, and we would have been like “clowns”, and probably we would have been desperate for all the rest of the summer camp and the other autistic cases); and also there were no neighbours here, except the other kids, who could have started to be annoyed or even scared, because they could have heard all this noise although we were in a rather distant room.
At this point, seeing that nothing was working and that he was “trapped”, he said that he wanted to go home.
But it was the night and we told him that anyway, it was not possible. He did not accept this reality and he insisted with “his will”. Then I told him to go home by himself if he wanted, just to show him the reality. But Zhanat went even further: she decided to go outside with him, to have him really facing the facts. We went outside with him, we were always 2 or 3 persons holding him, because he was constantly trying to escape. It was dark, it was raining, and there was even thunder sometimes. We were wet and he was shouting, it was rather horrible for him (and even for us). It was also difficult to hold him, because we were all wet.
He finally stopped asking to go home, and apparently this “improvised shock therapy” (which we did not plan even ourselves) seemed to make him more realistic.
We decided to go to a distant building, in order to make sure that the other kids would not hear his shouts, and in order to try to continue that “experimentation”.
I used my tools in order to quickly build a way to prevent him from going away from inside, and we decided that he would spend the night there, so we made 3 places for sleeping with mattresses: one for him, one for “his volunteer” and one for me (I never stay alone with any kid, and it was the only time in the summer camp where I slept in a room where a child was: I had my personal room in another building.).
There were toilets, he saw several persons with him (us) who looked very determined to spend a long time there, he saw that all of his “efforts” were producing zero expected result, and he was asked to go in the bed, so he finally calmed down.
In spite of all his bad behaviour and his violence, I was feeling sorry and sad for this little boy, who certainly did not understand what was going on, why his “dream” was stopped, what he did wrong.
Being autistic, I could detect some signs of his suffering of being a victim of a situation that he certainly considered unfair.
But I knew that we were right, that we were doing all that for him, for his life, because his usual life could not continue like that.
Zhanna and another volunteer went away, and we prepared to spend the night all 3, in this very “weird” situation. It was certainly looking like a nightmare for him. Why would he have to spend the night in this place, and on top of that to follow orders of someone not even speaking Russian? (I was using some basic Russian words that he could understand, but sometimes I did not understand him, and the volunteer translated).
I tried to show him that we were not here to make bad things to him. His dedicated volunteer was an extremely kind young man, and I placed some useful things close to his bed: water, biscuits, bananas, toilet paper, and even a second toy (a dinosaur). When he started to complain again (that he wanted to go back to the main house), I firmly showed him his bed, the toilets, the things that I brought for him (and he seemed to be a little bit surprised by this attention), and I told him that now we are all going to sleep, and switched of the light.
He made a lot of fuss and shouting etc. as usual, and even cried, but I told his volunteer to ignore all, that that sooner or later he would finish by calming down, and eventually by sleeping, which actually happened after 20 to 30 mn of “noisy revolt”.
So we won and he had to admit that “it does not work anymore” (at least, not here, not with us).
In the middle of the night, he woke up and made a big crisis, certainly shocked by waking up in the middle of this “unfair situation”.
He tried to go away from the building, but without success, since I had locked and prepared everything, then he was really in despair and shouting, and when I tried to calm him down by talking kindly with him, he started again to beat me: it was too much, and I saw my hand giving him a slap on his cheek! It was a reflex, very fast. Sorry about that, I was not allowed, but it was really too much for me, and maybe because I was half asleep, I just had this “human self-defence” reflex, instead of an “intellectualized” behaviour.
This is the only time I have hit someone in the camp, or even in years or decades, and anyway it was not very strong, I am sorry but I believe that after receiving dozens of strong punches in the arm (which was hurting), my body “rebelled” on its own, and there is no notion of “therapy” or “method” here: violence is never good, but sometimes there is no choice left, in self-defense situations.
Maybe the “big change” was well worth a good slap on the cheek, and there was really nothing hostile nor angry from my part.
He was surprised that someone dared to slap him (which maybe never or rarely happened, and which maybe was the “missing key” – to use only once), but it worked and he quickly stopped shouting.
And I even think that this complete change of my reactions to his punches participated to his “mental shaking”, something like “hey, what’s going on, what is happening to me, where is the dream and where is the reality ?”.
He could not escape, he could see that shouting had absolutely no effect (we were far from other buildings, and the volunteer and me did not show any reaction to his shouts, like if it was completely normal for us), and even the physical violence was not working, and it was even producing some unexpected (and undesirable) effects.
However, he still continued to shout and cry and try to escape during a large part of the night, but we were just ignoring him, and we pretended to sleep. Sometimes I pretended to wake up, and when he tried to ask me things (which he did more calmly, and even almost kindly), my only answer was a strong “no, now we sleep, you have to sleep” (I was saying “niet” in the most “cold Russian way” that I could…) which was very irritating for him, but he had no other option.
In the morning, I was very very surprised to see him smiling and happy, like dancing and vaguely singing, standing on his bed. It was just incredible. I made videos, thinking that no one would believe me. I don’t have any explanation for that. I had never seen him like that before.
Zhanat came and she had a plan (thanks to her experience with her own autistic kid) : to make him work, doing useful things, like feeding the rabbits.
I continued to sleep, but when I finally went out, I could hear him shouting and crying (that he did not want to do it) but Zhanat forced him to pick some plants (leaves) in a field and to feed the rabbits. To open and close correctly the doors, etc.
(As said above, the evening before, she had a phone talk with his parents, who accepted all this “experiment”).
Little by little, he stopped complaining, and I even noticed that he started being interested by the rabbits.
(He did this during several days, and at the end of his stay, I saw that he went to visit the rabbits, without anyone asking him, and was interested, watching them.)
I think that this “memorable night”, and this difficult morning, were really a “big wake up”, the start of a new life for him.
During the next days, he was still reluctant to do what he was asked to do, but at least he was doing it, and every day it went better. He even started to do some basic creative activities, and he was looking more “normal”, more like the other kids, more “with us” and “awake”.
2 days after the “big crisis”, his parents came, and we explained to them all of our thoughts and actions. They understood and agreed. And they could see the change in their son.
I insisted on my hope that they would try to continue in the same way after the summer camp, which was of course difficult for him (because of the habits, and because of the “loving feeling” (the fear of being too much tough with him), but they agreed to do their best to try.
Anyway, as I said, “if you don’t change, if nothing changes around him, then he will not change”.
It was very important, as I explained, not to go back to the past habits, the “bad dream”, and to continue the “awakening”.
They also asked me what is the best: finishing the stay today, or continuing for the second half (they were very kind parents and I think they were a bit ashamed about the behaviour of their kid, beating us etc.)
And I said that of course, it would be better to continue.
Because I could see that every day here was beneficial for the autistic kids, and because I wanted to “secure” as much as possible the “big change” for this boy. That this “strong experience” would not be just a “bad dream” for him, that he would forget, but on the contrary that this would become his new reality, the start of a his life: welcome to the world, Bekzat !
I also suggested that, since the volunteer was so kind and patient and dedicated (which was one of the keys to our success), maybe it would be a good idea if they “reward” him at the end of the stay.
Later on, I learnt that they did much better than that: they hired him to be an assistant of their son, several hours per week!
Sometimes he sent me some pictures of Bekzat, and there has even been one group picture where I could not even recognize him, because he was looking so serious.
After two weeks, I saw Zhanat receiving a phone call, it looked like very good news, and she was very happy and explained to me that the mother of Bekzat called to explain how much her son had changed, talking about a “miracle”!
So it was an “eventful” but very positive and rewarding experience, we apparently took some “risks”, but I knew and Zhanat knew that it was necessary. The problem is that usually parents don’t know what to do, and even when they are advised, they don’t dare to do it. That’s why it is very important to do things like these summer camps (or other inclusive stays or experiences), for limited durations, far from all the usual habits, and with persons (like us) who won’t be blocked by familial feelings (too much love or fear etc.).
I think that now this boy is on the right path: his parents know what to do, they are not scared anymore, they will not accept his caprices anymore, they will include him more and more in normal society and activities (that’s what they do); and I do think that even in the case there had been only this “little miracle” (which did not happen thanks to me only), my stay in Kazakhstan would have been worth. But there has been even more!
The case of Timka is quite different from the others, because I knew him already, having met him twice before (including in February), with his older sister who is usually caring about him.
In short, she is very afraid about everything for him, and for this reason, he is (or he was…) constantly “kept like a teddybear”, very kindly, but in a kind of “babies world” (at least, this is my point of view), with very few occasions to learn anything “social” and to change.
This is a very “classical” problem, unfortunately.
Those kids are supposed to be “unable” to do this or that, and therefore they are “protected” from the “normal experiences”, which makes that, of course, they are actually never able to learn how to do it, simply because they are prevented from doing it.
For instance, at our first meeting, while visiting a city, I suggested entering a shopping mall, but she was really not keen about that, she said it would be a problem because he would be frightened by the crowd etc. But I kindly insisted and I used the “magic word for the autistics” : “to try”. I said: “Let’s try: we enter, and in case of problem, we go out, it’s easy”. She could not refuse such a simple and safe principle, and she accepted. And there was no problem at all. Not only Timka was at ease, but also he was interested, and after one hour he was like at home, even playing and (safely) running in the mall… We were tired of the mall before him…
At the second meeting (in July), when I saw that Timka was a bit sad to leave me, I had the idea of inviting him to the summer camp.
But there were two problems: it was too expensive for the family, and also the sister was very scared about the experience (that Tima would “be unable”, would make crises, and so on).
I said that I would pay personally for his stay, and also I promised to be very careful about his stay, to keep her informed all the time by WhatsApp, etc.
The family took some time to think, and finally they accepted.
In the meantime, I realized that I was not so rich, and I tried to ask for donations with social networks in my former country (France, a country located at the south of Belgium).
An association (Autisme PACA) was interested, and when they realized that I was at the origin of the request and that I was actually living in the summer-camp, they immediately knew that it was not a scam, and they sent me the funds, which was really kind and useful.
So Timka arrived on the 3rd of august, with his sister, who insisted to stay during the whole first day. We managed to convince her to leave at the end of the day. She told me “my brother is in your hands” and she was very scared (that Timka would make a “crisis” at night, or… I don’t know what…).
Later on, I learnt that in fact she was so much scared that “something wrong could happen”, that she slept during the first night in a hotel nearby (the family lives quite far from Almaty).
Timka did not make any crisis at any time during all his stay, and there was no problem at all. He was even “angelic”, like most of those autistic kids.
At first, he was behaving rather like a baby, always playing with his modelling-clay, and not listening to anything (questions, instructions or whatever).
During the first 3 days of “adaptation time”, “his instructor” managed little by little to “kindly force him” to do like the other kids, to participate in almost all the activities (which was sometimes difficult, because he was very weak, and not used to any physical effort, même très léger).
For example, he had to learn how to do the “gym exercises” in the morning, which was really difficult at the beginning (it was like if you try to force a cat or a dog to do that, with almost no result nor attention nor interest) but he seemed to understand that it was important and expected from him, and finally he managed to do it rather quickly, with improvements that were really noticeable every day.
And also, the fact of seeing all the other kids doing that every morning and that all that was looking “normal and easy” for them, certainly contributed a lot.
Like I already said, it was like if we asked him to learn in a few days things that others learnt in several years, therefore, in fact, he was progressing very fast, given that he was starting from “very low”.
He went also several times with the others in trekking in the mountain, and I noticed, on the pictures and when he was back, that this made him “more present, more with us”, and that when he was tired after the physical effort, he was behaving “more normally”.
After a few days, the differences were visible in many things: he was walking “more normally” (whereas at first, he was sometimes running almost a bit like a monkey); he was standing and sitting more straight and normally (whereas at first, he was more often in a kind of “foetus position”); he had more attention and interactions (looking at us, trying to do what was asked); and finally he quickly changed and looked more serious and more like a young adolescent, not like a “teddybear”.
And also, we could see on his face that he was getting happier and happier during this stay (you can see it in the photos).
I think that this is thanks to the fact that we did not treat him as a baby (which was certainly new for him, but most welcome, and interesting), and because he had the examples of all the others, so he could (consciously or not) copy them.
Zhanna and I and the instructors were quite often sharing our thoughts about these spectacular changes, mainly to confirm things to each other, to verify that we were not “dreaming”.
We were taking pictures all the time and I was constantly sending pictures and news to the sister. After 2 or 3 days, she was feeling better, and she asked for news only 2 or 3 times per day.
After 3 days of adaptations and such fast progress, I had (once again) an “inspiration”: that Timka should do “useful things”, like dressing all the tables for each meal.
Everyone found it was a good idea, so we started to teach him how to do it. My project was to have him dressing all the tables without instructions, “automatically”, at the end of the stay. We could not reach this goal because of various problems and lack of availability to do the training enough intensively because the “order” and the tasks were not always the same (which of course was disturbing and not coherent for him), but I know (because I am autistic) that it would have been possible to do that because it is a matter of “order” and “routines”, so would be only a question of time before he could do it.
If I had been available enough to “coach” the instructor carefully and precisely, and if we had set up a strict routine, it would have worked much better.
Anyway, he made great progress in these tasks, and at the end, the result was not so far from my expectations.
In the beginning, it was really difficult, but after explaining and showing how to do, for each action, little by little he managed to do it and to improve quickly.
In the beginning, after each action (like putting a plate on the table), he would just sit and wait for eating, but at the end of the stay, he did not do that anymore.
In the beginning, it was so hard for him to manage to do anything, that we would not even dare to think about asking him to carry the hot tea (in a glass recipient), but after 2 days he was carrying two of these recipients, without problems.
Same for the drinking glasses, after only two days he used to carry 3 glasses in each hand. And so on.
Finally, he was behaving almost like the employee of a restaurant, and frankly, it was amazing to see that, to see this “little autistic” doing these tasks rather seriously and correctly, whereas one week ago he was looking like coming straight from a “teddybears shop”…
Zhanat and me we had the same idea: that he could work as a waiter in his future, or at least in a restaurant, even in the kitchen.
We also taught him how to do some things in the kitchen, like cutting or peeling vegetables, and he did well.
I do even think that he could work not only in a restaurant but in many other places (like with mechanics, wood, garden, animals, cleaning, etc.).
Even if he does not speak a lot, where is the problem? Sometimes it’s better, instead of saying stupid things. And he is so kind and lovely.
Maybe one of the best moments was when he made pancakes for all the kids: before eating, the staff explained that to all them, all waiting at the tables, and Timka was standing in the middle and everyone applauded and congratulated him; it was visible that he understood, and he was happy. It was really moving.
This is what we the autistic we are needing: acceptance, leading to the self-esteem, necessary to find how to find our place in society. Not the hospitals and special centres.
On the last day, he went back to the town on the normal bus with the others, without any problem of course (although it looked “impossible” to his sister at first).
We received this boy “like a toy” at first and we brought him back to his family “like a boy”.
I insisted with his sister about having him “doing normal things with normal children”, and she promised. Anyway, she could clearly measure the difference “between/after”, she could see that there was no danger in the change, that it was possible and beneficial, so she understood that *they* (the family) had to change, for the sake of Timka, and that it is possible and easy: just treat him normally.
Apparently, that’s what they are doing now, so once again this is a little success, and we are very glad to have helped this boy to start “going down from his cloud” and come to real life.
This story is particularly interesting also because it is the result of the collaboration of an autistic (me), the mother of an autistic (Zhanat), and another autistic (the president of the French association who paid for his stay).
The case of Nurzhan is very different from the others.
He was a very weak and fragile little boy, looking rather unhappy.
His had only two interests : jumping from a chair (or any other high thing), and throwing little stones.
In other words, he had a sort of “interest for gravity” and I did not have enough time to search the reason.
It was very difficult to have him do anything else, or listening or following anything.
We knew that his mother submitted him to the “Skorvtsova method” in Russia, consisting in making hundreds of injections…
This boy was obviously suffering.
On the first night, he suddenly cried a lot, and Zhanna managed to guess that he was hungry.
On the second day, we had a very interesting experience.
The “countdown trick” :
He was outside, picking and throwing little stones in the pathway, as usual, and we wanted him to come back inside. He said something meaning that he wanted to play again for two minutes.
Being myself autistic, I did what I usually do in such cases: I took it to the word…
I immediately set a countdown of 2 minutes on my smartphone, and I showed him and explained to him that when it comes to zero, he has to follow his promise to come inside.
I said something like: OK, you have the right to an “extension” (of the time), to play for 2 minutes, and we will wait for you (instead of forcing you right now), BUT the deal is that after 2 minutes you will come inside (without other discussions). (Of course, this was translated and simplified, in Russian.)
At first, he did not seem to really pay attention, but we continued to explain to him all the time, telling him how much time was left.
He was surrounded by 3 or maybe 4 persons, all telling him kindly that at the end of the countdown, he would have to go.
I noticed that when there were less than 30 seconds left, it became difficult for him to continue playing throwing his stones, he was sometimes looking like hesitating, like if it was nonsense, and he was more and more focusing his attention on us and on the smartphone.
When I came close to 15, I made the real countdown with the voice, and his instructor made it clear in Russian that there was only 10 seconds left, 5, etc.
And… when I said ZERO, we saw really a kind of “little miracle”: he suddenly left his stones, stood up, headed right towards the house (where he had to go), and immediately walked there, almost like a robot but also very spontaneously, without any hesitation! We were so astonished, that we were rather “petrified” (usually, it was so hard to have him follow any order !), and during a few seconds, we did not even have the reflex to follow him… Zhanat looked at me with “eyes wide open”, and her mouth also was open, but she was speechless… like me…
I think that this “success” is the result of two things: we managed to “transfer” his attention from his game towards something else (almost like with “hypnotizing”, because we were numerous, surrounding him, determined, and always repeating the same thing), but also an “autistic mechanism” was used: he *promised* something. He planned something in his head, so he *had* to do it. This is typically autistic and I know it well. Both things were necessary, because if we had not reminded of the “promise” or the “deal”, very probably he would have forgotten it after 10 seconds or before.
After 3 days, his mother came, and we talked about the situation, with her, Zhanat and the instructor.
She did not seem to be impressed nor interested in the “little miracle”.
I said that it was “encouraging” and that I would like to try to make more “experiences”, and I asked her if she accepted to leave her son for more days, but she immediately replied a strong and clear “NIET”, looking at me like if I was someone bad or a bit disgusting…
Since the beginning, we have not been able to understand the behaviour of that mother.
I said kindly that it was a pity, that all the kids were benefitting from the camp but that it takes some time, but she explained that she had “no time” and that she preferred to bring her son again to doctors, that she had to go to Russia with him for the Skorvtsova treatment again, such things…
So we had to see this woman and her son leaving the place and refusing even to try our help.
And when he left with her, Nurzhan cried a lot.
I was thinking that it was a sign that we were right.
And she was a bit embarrassed (and anyway she was suspicious and not at ease since the very first day), but when I thought about the sufferings of this poor boy, and that this was his usual life, I could not think about his mother; I was only feeling very sad for him.
I don’t understand…
Added in 2021: Even years later, I can’t prevent from crying when thinking about that poor little boy, and unfortunately Zhanat told me that his situation is even worse now.
People have solutions (or the beginning of solutions) under their nose, but they don’t want to try, and they prefer things that are visibly disastrous…
This is a classic (and very destructive) problem with “people who know better” (but I will not elaborate on this topic here as it is outside the scope of this report).
7- Special case of Adiyar
For me it is “special” because :
a- he is not a kid, but a 22 y.o. student ;
b- at first, he was coming to enjoy the summer camp, like the other children, but after some time, he came back as a “volunteer”, like the other young instructors ;
c- he accepted to become the first “Ambassador of Autistan” ;
d- I helped him by making “social experimentations” in the city (Almaty) ;
e- and we continued these experiences in Spain.
a- Adiyar as an “older child”
After one day in the summer camp, when i asked him his impressions, he told me “I just want to go home”…
The reasons that he was not really knowing what he was doing there, and also the fact of being far from his family and habits, and also of course the fact of being the only young adult, in the middle of children (the age of the camp was 6-18).
But he participated simply to the activities, and little by little, day after day, I saw him more and more relaxed and happy and socializing, especially with the young volunteers (the “instructors” of the kids).
At the beginning he had sometimes some “strange” behaviours (like agitating his hands), but much less at the end.
During the last days, I heard him laughing many times, and also singing several times.
I also tried to discuss with him about the problem that he usually encounters as an autistic, but he was not so keen to talk about that, so I just tried from times to times, waiting for him to be more prepared and willing for that.
b- Adiyar as an volunteer (“instructor”)
One or two days after having left the camp, Adiyar and his family understood that he was quickly going “back to the old routines and habits” in his home, and apparently he felt that the “change” was beneficial for him. In fact, he had “tasted” something like “new overtures or possibilities”, and this was “attracting him”. The “little change” in the summer camp, associated to all the “autism-friendy” atmosphere, and the discussions with me, and my desire to help him to feel better, all these things created a contrast when back home, which helped him understanding how rigid and “locked” his life was, and how useful it would be to start to change.
(This is one of the benefits of these summer-camps, I think : the contrast when you come back home – like when you come back from a long holiday and you notice all the things which are “not acceptable” but that you were used to).
So, it was a good surprise for us when he decided to come back for the next season, and on top of that he came back as a volunteer, which means that he felt more confident. I am not sure that he was as efficient as the other volunteers, but anyway this new function was useful for him, and anyway better for his self-esteem. And he was much more “interactive” with the other volunteers and in fact with everyone, and obviously he had a pleasant season (laughing etc.).
c- Adiyar as an “Ambassador of Autistan”
Given that one of my goals during my stay in Kazakhstan was to improve the concept of “Autistan” (read further, chapter 15), I was supposed to look for an “Ambassador of Autistan” for Kazakhstan, but in fact I did not even have to search, I found it obvious that Adiyar was good for that, and we were living more or less together so I really did not have to make any effort (this is one of the reasons why I say that all was “coherent”). So I proposed him, and within two days he accepted.
(Of course, I don’t know all the autistics in Kazakhstan, but I was with “the people who know autism in Kazakhstan, which has a rather small population (17 millions) and if there was another autistic adult in KZ, “good to represent the autistics”, we would know it.)
Then he wrote a text about that, and, later on, we made the “official picture”.
This “function”, although only “symbolic”, certainly helped him also to feel more confident.
The simple fact of writing about his difference, and of appearing online as an autistic, with his picture and real name, is something very useful to avoid being stressed or afraid by things like “what will people think about me”.
d- “Social experimentations” (in town) with Adiyar
His biggest difficulty was about how to contact people, to engage a conversation, etc.
And I want to help him about that, in real, not just in theory. But it was not possible in the context of the summer camp (where there are no “strangers”).
So wen went several times in the city of Almaty, in malls, parks, streets, and I asked him to ask questions to people, at first simple (what time is it) and then more difficult, and we found a good thing to do, a question about “what is the difference between a squirrel and a toothbrush”, it was funny and it helped a lot to engage conversations and to be in control of the situations.
We did various things, more or less funny or awkward or daring, it would be too long to list here.
I showed him that it was not so difficult, and that even when he (or me) was ridiculous, “the world did not collapse”.
I showed him also that he was talking too far from the people, not loud enough, and also I showed him how to walk straight towards people and not too fast nor too slowly, because anything “not normal” will activate their “suspiscious mode”. And other things like that.
I must say that the first “attempts” were very difficult. One of the factors of the difficulty was also the fact that these exercises were of course looking “rather strange”, even for us, or not really justified, because we were creating artificial situations, simulations, which is always more difficult for an autistic, because in this example Adiyar could not guess the benefits that myself I had in mind, according to my own experience. In other words, he was entitled to have some doubts about all that, and this was not helping to motivate, especially at first.
But little by little, he started to notice that it was less difficult, that he was more at ease, that communicating with people would be funny, so he was more confident in himself, and only in me.
There was a funny anecdote, when he was not yet so assured, we were outside a mall, and there was the young Arsen with us, who has no problems talking with people, and who was drawing Aldiyar by the hand to force him to talk with people. But anyway, the “force” does not work with him, so I had to use patience, experiments, examples, to prove him my “theories” about people, to show him how easy it is to approach anyone and talk about anything, by avoiding thinking too much before, and also by having a “normal behaviour”, and other things like that.
And also, we both had badges with “I AM AUTISTIC” (written in russian), which could help people being adapted by “switching off their automatic mode”, but in general they did not notice the badges, and probably they did not have any idea about autism (we could verify this sometimes).
I showed him that he should not be impressed by people, because most of the times they have no clue about anything, or they understand barely what is outside of their little “box”, so why being impressed and scared by what they think about us ? (We showed pictures of “crop circles” to young people, looking educated, to ask them what they think about that, and they replied “it does not exist”…).
e- More daring “Social experiments” in Spain with Adiyar
I found that there could be much better progresses for him, but in order to do that, he had to really go out of his “comfort zone” (country, language, everything).
So I proposed a short travel in another country. But of course their were the issues of costs, security…
But once again the “occasions” helped us, by providing a compromise : the family went on holidays in Spain, but they “gave me” one week at the end of august, to try to “unlock” Adiyar even further.
I did this for free, but all was paid (including the flight from KZ to SP, which was very appreciable for me, given my financial situation, and given that anyway I was going in this direction for my next destinations).
9- Problems of the families and environment
Treating as sick – they don’t try to understand their kid, they just think he is “sick”, because of the “medical approach”
Shame, hiding etc
10- Commercial exploitation and questionable methods
11- Autism in KZ
(new, ABA, Ashyk Alem, Asyl Miras)
12- Suggestions about a national inclusive approach
13- The Pioneer Concept, the international collaboration
14- AAGP (now called “A Better Life for the Autistic People (August 2021))
Report written in Almaty (KZ), Alicante (ES) and Tanger (MA) in 2016
[07:41, 18/8/2016] Janna KARATAI: Arsen, Mansur, Arthur and Vladimir are OK for the pictures
(I assume that Timka also)
Report written in Almaty (KZ), Alicante (ES) and Tanger (MA)
 Meaning “Open World”
 Meaning “hello, hello” in Russian
[07:41, 18/8/2016] Janna KARATAI: Arsen, Mansur, Arthur and Vladimir are OK for the pictures
(I assume that Tima also)