Meeting with autism professionals in Bishkek (andproblem of excessive heating”)

1. Meeting

On February 2nd, 2016, the founder of the Autistan Diplomatic Organization was invited to answer questions from autism professionals at a center for autistic childrenassociation Рука в руке (“Hand in hand”) / Autism.kgin Bishkek, the capital of Kyrgyzstan.

Crossing the border between Kazakhstan and Kyrgyzstan, a few kilometers before reaching the capital, Bishkek

This sign indicatesKyrgyzstanin Cyrillic.

The center is well-equipped with various rooms, and the staff appears to be both skilled and dedicated.

Association Рука в руке (“Hand in hand”) / Autism.kz in Bishkek

Click on a question to navigate directly to it:


2. Problem of excessive heating in the bus (one day before the meeting)

2.1. Summarized description

In January 2023, during a wintry journey from Almaty to Bishkek, I found myself aboard an intercity bus, a cozy van accommodating about a dozen passengers. Despite the freezing temperatures outside, the interior of the bus was a stark contrast, as the driver had cranked up the heating to its maximum setting, a common practice in such vehicles.

As an individual on the autism spectrum, I struggled to endure the stifling heat, feeling as though I might faint. Attempting to remedy the situation, I politely requested the driver to lower the temperature. Unfortunately, his response was not only unhelpful but exacerbated the issue as he inexplicably switched off the heating entirely.

Soon, murmurs of discomfort filled the air as other passengers began to complain about the plummeting temperature—a direct consequence of the driver’s misguided actions. Despite my attempts to offer a solution, suggesting a middle ground on the temperature control knob, the driver adamantly insisted that such adjustments wereimpossible.

With my limited proficiency in Russian hindering effective communication, the situation grew increasingly challenging. However, a stroke of luck came during our mid-journey break when I managed to secure a seat in the front row, positioned just a seat away from the driver. Seizing the opportunity, I discreetly documented the situation, capturing evidence of the malfunctioning heating control.

It appeared that the passenger seated next to me conveyed my actions to the driver, prompting a sudden change in his demeanor. Almost miraculously, he adjusted the temperature control knob to a more tolerable setting, finally alleviating my discomfort.

This incident serves as a poignant example of thesocio-generated harmoften inflicted upon individuals with autism. Beginning with sensory discomfort—such as in this instance—the situation escalated due to a lack of understanding and consideration from the social environment. Attempts to advocate for change were met with resistance, ultimately resulting in feelings of injustice and frustration.

As I frequently emphasize, the core issue lies not with autism itself but rather with the failure of society to adequately accommodate and understand the needs of individuals with autism. It underscores the importance of fostering a more inclusive and empathetic social environment, one that prioritizes sensitivity and intelligence over indifference and routine behaviors.

Eric L.

2.2. “Normal excessive heating” (26-28°C)

Here is an example of when the temperature wasnormalfor the passengers
No one seems to be suffering.

2.3. People saying that it is cold (outside), and attempts to ask to lower a little the temperature inside

(In poor Russian and English)

 

2.3.1. Approximate transcription of this video

Speaker 1 (passenger)

It’s cold. (outside)

Speaker 2 (passenger)

It’s cold now. (outside)

Speaker 3 (autistic)
It’s cold ? 28…?
I don’t understand.
I don’t ask exactly 22.
Just lower a little bit. I don’t ask exactly 22, of course.

Speaker 4 (helpful passenger, translating)

Just a little bit less hot, please!

2.4. Live description of the problem

(In French)

 

2.4.1. Transcription of this video (translated in English)

I’m living a rather horrible situation. It’s 28°C in there, it is super hot for me.
Nobody cares at all, people are not feeling hot, [although] they’re dressed like that.
I asked to lower the temperature. They are unable to do anything other than turn off the heating.
Now it’s too hot. But when they turn off the heating, after 30 seconds it’s too cold [of course!].
It’s a crazy story.

2.5. “Solutionof the driver (20°C and going lower (and people complaining))

2.6. Finally a sign of attention or intelligence from the driver (23-24 °C)

23-24°C is thenormaltemperature range recommended in the planes, for example.

After 2 hours ofnightmareand struggling against stubbornness, we finally reached a solution.
And no one complained about feeling too cold, with 23-24°C.

It is important to understand that thecorrectionsneeded for autistic people are not bothersome fornormalpeople.
They are simply refinements, thoughtful and considerate adjustments, enhancements.

2.7. Recording after the problem (analysis of what happened)

This recording is in English and Russian, but there is a transcript in English below, and this page is automatically translated in many languages.

 

2.7.1. Transcription of this audio

Speaker 1
Now I am at the border between Kazakhstan and Kyrgyzstan. I am with a young guy who speaks English. He was travelling with me in the little bus from Almaty, Kazakhstan to Kyrgyzstan.

At first there was no problem. I was in the back of the little bus of 17 persons with him and all was fine. But little by little the temperature came higher.
And when it was 26, 27°C, I really had problems. And I asked him to ask to the people in front of us if it was necessary, in their opinion, to have such a temperature. And also I expected that they would ask this to the chauffeur.
And I told him, look, ask them if it is necessary or even why it is so hot. But please do not ask them to turn off the heating, because I know if they turn off the heating it will be because of me and people will be angry because of me. And now he will explain this in Russian.
Look, it’s only sound, there is no problem. You can explain the story. Look, it is recording.
Speaker 2
We were driving in the minibus, we were driving together, there was a temperature. The driver turned it on, set the temperature in the car so that the car would heat up, the heater. And Eric felt bad because the temperature was too high.

He asked him to find out if it is possible to make it quieter or is it normal, the average temperature. Well, they explained, the driver made it quieter.
Speaker 1
Yes, for people it is normal, because, in principle, for us it is normal, we did not think about it.
Speaker 2
They could not set the right average temperature for a long time, because of this there were problems. And then, because of the high temperature, Eric felt bad.
Speaker 1
Почему двадцать шесть? Почему? (Why twenty-six? Why?”)
And he said, I don’t know what he said in Russian, but he did not want to change.

And I said, we are not in Africa, it’s Kazakhstan, it’s not Africa, why 27? And if you can say it in Russian?
Speaker 2
Yes, he asked why such a temperature, we do not live in Africa, why is it so hot in the car, why such a temperature. But the driver did not understand him.
Speaker 1
And when I came back to you, to our seat, I was thinking that maybe I will fall. Really, you saw me, you saw I was very bad. And you said in Russian, something like this.
Can you translate in Russian?
Speaker 2
Yes, he asked to change the temperature, but the temperature was not changed. Well, or they could not put the one he wanted, because of this he felt bad. And then the driver, what did he do?
Speaker 1
He switched off completely the heating. And remember, after 15 seconds or 20 seconds, I said, it’s cold.
Speaker 2
Yes, he turned off the heater so that you would be fine.
Speaker 1
And then I started to be really upset and to shout in English, maybe in French, to become another person, not the same Eric, do you remember?
Speaker 2
After that, Eric felt bad and he became a completely different person, everything was wrong.
Speaker 1
And then he understood that there was a problem and he stopped the bus on the side of the street. And he was a little bit angry and he opened the door and he said something. I think in Russian he said, if it’s too hot for you, you go in the street, something like this, no?

Yes, I agree. The first time when he stopped, he opened the door and said, go out.
Speaker 2
Yes, yes, the driver then could not understand, he thought, maybe you really feel bad, they stopped the car, offered to breathe fresh air. After that, of course, he did not want to stay on the street, on the road.
Speaker 1
And I said, no, I don’t want to go out. Do you know why I did not want to go out? Because I was afraid that maybe he would leave me here, I don’t know, this country, maybe.

I don’t know what could happen. Can you make a pause? Yes, yes.
And then it was like this during some time and at some point I was so upset and I shouted. And because I cannot express myself in Russian and even in English, I made like a donkey. I was saying all the time, it’s so stupid, it’s stupid, I was shouting and it was the beginning of a scandal.
And I told you before, if we can’t find a solution, I know myself and there will be a problem. And then the bus stopped for the second time and for the second time I accepted to go, to take fresh air because I was very bad. But I did not put my feet outside of the bus.
And then they understood that there was really a problem. They proposed me to go in front, front seat, close to the chauffeur and another woman. And it was a little bit better, less hot.
It was less hot and I stayed there.
Speaker 2
I can understand.
Speaker 1
I went, I changed the seat. Yes, yes, your place. I changed the seat.
Speaker 2
And it was better.
Speaker 1
It was a little bit less warm.
Speaker 2
And it was better. Less hot.
Speaker 1
And it was better. They were complaining and they were angry about me.
Speaker 2
Go, go, go, go.
Speaker 1
There was even a beginning of a new scandal because there was a girl behind me and she was starting to be upset too. And she said it is too cold. And she said also you have to take a taxi next time if it’s not good for you.
You have to take a taxi. And me too I was upset because it was 22, 23. The temperature was 22, 23.

Yes, this girl. And I was, sorry, sorry, excuse me, excuse me. Sorry, I was upset.
There is no reason. It’s not her fault or my fault. It’s the fault of the chauffeur.
I was upset. And I said, look, you are Kazakh, we are in Kazakhstan. Outside it is maybe minus 5, minus 10, I don’t know.
And you tell me that at 22 you are frozen. Then how is it when you are in your mountains with the snow, you understand? If you can translate it in Russian.
Speaker 2
Yes, yes, I can. It turns out Eric is asking about when we were driving, I was turning the car on and off. Then people started to complain that it was cold.

But it was not clear. For Eric, the question remains incomprehensible. Why is the temperature on the street minus 4 and people feel fine, we live.
But we are driving on a minibus, 24, it’s not normal for them. Why must the temperature be 28?
Speaker 1
And I was starting to shout again. And I think that people in the bus did not like me. Is this the problem?

It’s the beginning of a social problem. And even you came and you were a little bit angry against me. We are frozen, Eric, please.
It’s not my fault, what can I do? And then, can you translate? Yes, yes.
Speaker 2
Because of this scandal, many people were outraged.We are freezing”. Because the driver turns off the heater, turns it on.

And then everyone started to be angry with Eric.
Speaker 1
And then I found the idea of the century. Because I am a genius, look. I saw that there was a setting for the heating, like in every car in the world.

It is red and blue. And you can turn a little bit, a little bit, a little bit. You know, it is round, you can set as you like.
And I saw it was always maximum or minimum. And I tried to explain in Russian. I said, look, at the top, problem.
At the minimum, problem. Why not here, in the middle? And he did not reply.
It was like if I spoke in Chinese, I don’t know. Can you translate?
Speaker 2
Well, it turns out, after he drove, drove, asked, the driver turned it on, then turned it off, then turned it on, then turned it off. Eric, Eric, Eric, Eric came to the point that you can put it not too cold, not too hot, but in the middle. And when he put it in the middle, the temperature became normal.
Speaker 1
He did not understand immediately.
Speaker 2
Why didn’t the driver do that from the very beginning?
Speaker 1
I said, at the top, problem. At the minimum, problem.
Speaker 2
Here, no problem.
Speaker 1
Why not? And after 5 or 10 minutes, he accepted to try my idea, which is normal in all the world. Yes, yes, yes.
Speaker 2
Everything is brilliant. He just put it in the middle and everything became normal. Because it was a Kazakh car.
Speaker 1
No, it is working. Me, at first, I was thinking there is a problem in the heating. Maybe it’s maximum or minimum and no possibility to be in the middle.

But no, I saw it was possible. You just need to put the button at the middle and it was. And I had the proof because I had my thermometer at 23 then, all the time.
And I asked two people behind, is it hot, is it cold? And people say, no, now it is OK. Then it was possible.

It was so easy.

Speaker 2
Yes, he was outraged. Because at the beginning they said it was impossible. And then he put it in the middle and it was OK.
And everyone was driving and at the end the temperature was OK. Why it was so easy, why there were so many scandals? Why it was impossible to put it at once?

So easy.
Speaker 1
So easy. Thank you very much. Thank you very much.
Speaker 2

I hope that OK, thank you. Thank you.

2.8. Consequence of that excessive heating nonsense: very sick

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