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Little big stories - Captivity of dragonflies (VIDEO)

On the eighteenth day of the state of emergency imposed in Serbia due to the coronavirus pandemic, the symbols of Belgrade were painted blue. It was the World Autism Awareness Day.

Dario Rosi: That date means nothing to us parents, and the blue colour means nothing to us as well, nor does the fact that the buildings have turned blue. We live the other 364 days a year the same way and with the same restrictions.

This 2nd of April was, however, different. There was a curfew. The blue colour only confirmed that the form, yet again, defeats the essence.

Along with some information about autism, the city manager of Belgrade, Goran Vesić, wrote the following statement on his Facebook profile:

"Today is an opportunity to raise awareness about autism, take measures to prevent discrimination and promote inclusion in society."

In reality, things were quite different.

Dario Rossi: We do not have any institutional assistance, not even in the regular circumstances, let alone when there is a state of emergency.

Neither the authorities nor the profession, as they call specialist doctors in one word since the proclamation of the pandemic, have remembered the special needs of people with autism and developmental disabilities.

Nenad Glumbić: Children with autism have a tendency towards stereotypes, they like routines. Any situation that is completely unpredictable for them is a source of great stress.

Moreover, it took them a month to respond to the appeals of 20 associations, the media, the Commissioner for Equality and the Protector of Citizens, to be allowed to walk, as that is one of the essential activities of people with autism.

The irony, that they became visible only after they’ve been put on lockdown, does not mean that the focus remained on them.

Dario Rossi: We don't know what will happen if we get infected.

Does the state of emergency ever end for people with autism and their families?

Tanja Stojanović: We are not recognized by the system.

Is there an autism epidemic that we are not ready to recognize?

Dario Rossi: It is a group of over 100,000 people who suffer in a certain way.

And what awaits us because of that? – these are the questions that open Insajder's Little Big Stories.

 

 

CAPTIVITY OF DRAGONFLIES

 

It took three weeks for the authorities in Serbia to realize that coronavirus is not something to be joking about, not even in Serbia.

Tanja Stojanović: In the beginning, we received some information that the virus is harmless, that we should not be afraid of it, and then day by day that information changed to the point where it is considered to be very dangerous, even lethal, and that the healthcare system will be in jeopardy if we don’t abide the measures. Somehow, I had the impression that no one really knows how to deal with that. I wasn’t exactly panicking, but suddenly there was a serious fear of it.

The first case was registered on March 6th, and on the 15th a state of emergency was introduced, which was followed by a curfew. Corona was regarded as an invisible enemy to whom the state has declared war.

Even then, those who have over the years been considered to be the most vulnerable, are still invisible to the authorities - people with disabilities, including children and people with autism.

Snezana Maksimovic: We are generally invisible to the system, and the relevant institutions have many unresolved issues when it comes to children with autism and other people with disabilities in general.

Dario Rossi: With the first day of the state of emergency day-care centres were shut down, the service “Predah plus” was closed, the facility was closed.

Snezana Maksimovic: Suddenly everything stops, schools shut down.

Tanja Stojanović: For us, that meant that every kind of organized activity stopped. We didn't even have details about how are we going to work, which created additional problems in terms of organizing taking care of the children.

Dario Rossi: As always, when it comes to autism, everything fell on the backs of the parents.

Tamara Stojanović: I think that it is difficult even for the siblings of children with autism, because their daily obligations stop, they adapt to that. I’m talking about some routine and essential activities in which one would not otherwise be expected to participate with someone. I have to supervise hand washing, things like that, brushing teeth, breakfast, giving medicine, so it definitely requires more work.

Isolation for these people, unfortunately, is not unfamiliar.

Dario Rossi: Isolation, social distance and everything else, that is kind of normal for us parents of children with autism. And this state of emergency is an opportunity for the general population to roughly feel the way parents of children with autism live their whole lives.

The state of emergency and the pandemic, however, caused additional fears.

Dario Rossi: We were afraid of a disease as such, that one of us would get infected, and that we would then pass it on to children and they would get sick, because that would greatly complicate their medical treatment because people with autism, especially children with autism, have a big problem with any kind of medical treatment. They find it difficult to visit doctors, to get injections or their blood drawn.

Snezana Maksimovic: As a parent of a child with autism, I was primarily frightened of what would happen if one of us gets sick, how will we organize our lives. I have to stay in the house, I have to get everything we need, firstly the supplies of supplements and medicines for him, that was my biggest fear – if there are going to be any. It really terrified me to wait in line in front of the pharmacy, everyone was waiting, but we had an additional problem, I was in a hurry to get back home. Then when I finish shopping, as soon as I get home, we would quickly go for a walk, Pavle would take his backpack, his things, because he thought he’s going to school, it took him seven days to kind of realize why we are not taking him to school, why we don’t go to the trainings in the afternoon anymore. In a way, he has that biological clock of sorts, he knows exactly what’s supposed to happen at a certain time.

Nenad Glumbić: Unlike children from the general population, where it is of course important to organize the rhythm of the day, for children with autism it is very important to also structure the so-called free time. Without a clear and predictable structure of free time, these children are lost.

Snezana Maksimovic: He took it very hard, there is no school, no training, no visits to his grandmother, nothing that he would regularly do, and simply no life the way he is used to.

Tanja Stojanović: Maša is a child who, in a way, has this ability to adapt, but I can now see on her that some new obsessions appeared, for example, now she can't walk down the hall without opening the toilet door and pushing it ... Or she fixed her bed where it should be, if it's not in that place, she would move it.

Tamara Stojanović: Since she is not verbal, she communicates in a way that can sometimes be quite irritating and disruptive. It's something that I am used to and I usually don’t make it a big deal, but it also happens sometimes that it bothers me and deconcentrates me. So, for me, the library is actually a second home.

But the biggest problem arose with the introduction of weekend curfews, which lasted up to 80 hours on Easter and holiday weekends. The feeling of not being able to find any sense in staying at home was intensified by the nice weather.

Snezana Maksimovic: We organized some activities at home, such as drawing, painting, watching movies, we used this gym equipment that we have, but it's hard to explain why we can't go out.

 

Tanja Stojanović: Our established daily rhythm that we had was now completely disrupted.

Dario Rossi: Routine is important for autism, it is a well-established scheme, every disruption of that scheme leads to some breakdowns. It is difficult to explain to a child with autism, generally a person with autism, that, say, after 5 P.M. they cannot go outside. Some children with autism do not understand speech or have very limited speech comprehension or are non-verbal, so they do not speak at all, or are minimally verbal.

Dario Rossi: When you get a diagnosis of autism, you get a kind of a life sentence. Prohibiting the movement of children, people with autism, is in a way an additional punishment.

That punishment was not on the list of all those who were declared in case of violation of protection measures and curfew. But the specific position of people with autism was not taken into account even when certain measures have already been corrected due to the specific needs of certain groups of the population, such as dog owners.

Although special rules and complete quarantine applied to elderly, as a particularly sensitive health group, families with autism were not considered by the state in that context either.

Snezana Maksimovic: There are parents who are over 65, their children are between 35 and 45 years old, no one thought of them, going out was forbidden for them, they live with an adult with autism. How did they manage the situation? They couldn't even go grocery shopping, they couldn't go out, they couldn't take their child out, day-care centres didn't work.

Even after two full weeks since the introduction of the state of emergency, none of the authorities addressed this problem. To add to the irony, only three months earlier, a huge event was organized in Belgrade dedicated to the issue of the position of persons with disabilities in emergency situations.

Dario Rossi: At the end of December 2019, the finalizing event of the big project "Persons with Disabilities in Emergency Situations" was held, the Emergency Situations sector was present, all media were invited, also REM, UNS, NUNS, The Ministry of Culture, the Ministry of Social Affairs, all this was supported by OSCE, and the Embassy of Sweden. A 35-page manual was issued, etc. Videos were made, and two or three months later we have an emergency situation in which society and the system do not react in any way when it comes to people with disabilities. We were completely shocked to find ourselves locked up with our children with autism to whom we cannot explain why they are being locked up, that we cannot go out to buy what is necessary, and that we cannot get in line to buy gloves, disinfectant, masks, because no one has provided them to us as a particularly vulnerable group, and we do not know what will happen if we get infected.

The problem was only getting bigger, so the issue removed any differences between the associations. This time, 20 associations united and decided to take action.

Dario Rossi: So we made an initiative called Petition to fix the position of people with autism during a state of emergency, and we sent it to 30 addresses.

After three days, exactly on the World Autism Day, the Ministry of Labour and Social Affairs responded to this request, stating that they "fully understand the situation", but that "other bodies are competent" to evaluate and accept that proposal.

Dario Rossi: We are not in charge, but contact them, then we received a response from the Ministry of Health that the Ministry of the Interior and local self-government bodies should be the ones dealing with that.

The city centres for social work also declared themselves incompetent.

Dario Rossi: The Protector of Citizens then sent letters to the ministries on behalf of all the parents of people with autism, but did not receive a response.

The number of complaints was increasing, so the Protector of Citizens announced on April 7th that he had discussed the problem of people with autism with the Prime Minister, who - as he stated - pointed out that the problem would be solved as soon as possible.

"Citizens will be able to apply for permits electronically and consent will also be given electronically, to make the whole system more efficient."

The next day, the Ministry of Labour and Social Affairs published the procedure for obtaining a permit on the website, but instead of an efficient procedure, bureaucratic entanglements arose, due to which the path of demands of autistic families leading from local governments through this ministry to the Ministry of Interior became such that it was not successfully completed by anyone.

Dario Rossi: Permits were to be obtained, who to obtained them from, how to do so, what are the requirements for the permit, so two days were additionally lost there.

Three days later, the Commissioner for Equality had to intervene. In a letter to the Minister of Labour and Social Affairs Zoran Djordjevic she also mentioned various types of health problems that autistic people can suffer from due to the inability of movement.

Dario Rossi: There is a lot of talk about autism, but little is known. Serbia has essentially accepted the social model of disability, which implies that disability is a social problem. It sounds really nice, but it doesn't apply in practice at all.

Snezana Maksimovic: We had to address the media, to go public, in order to become visible.

Dario Rossi: And then something happened that I don't remember happening recently - the media woke up. And all the media supported our initiative. To be on any spectrum of media reporting, which is just a proof that our request was accurate, objective and realistic.

While answering questions from journalists, a member of the Crisis Staff, Professor Darija Kisić Tepevčević, on April 12th, almost a month after the introduction of the state of emergency, said that experts will suggest to the Government that people with autism should be allowed to move during curfew, but so that their movement does not overlap with other categories of residents.

Darija Kisić Tepavčević: It is absolutely professionally justified to set independent hours for such categories of our citizens, that do not overlap with the hours of allowed movement of other persons, and as such will be proposed to the Crisis Staff.

Two days later, it was announced that they would be able to go out from 6 to 8 PM, although there is no such information in the Decree that was passed.

Dario Rossi: The decree put us in the sixth place, along with those five categories, as a special group allowed to go out, after us are people who have pets, i.e. dogs.

Although the Decree does not mention the time limit, the public was first informed that people with autism will be able to go out from 6 PM to 8 PM, but the same evening, the President of Serbia said on RTS that this had also changed.

Aleksandar Vučić: We have changed that in the meantime, from that 6-8 PM timeframe Darija proposed - they can do it at any time.

Making amends and allowing people with autism to be able to go out brought relief and joy.

Snezana Maksimovic: He was delighted. We slowly started to get back to normal, although he still wants to go to school every day. He can't understand that he can't go to his grandmother's, that's a big problem for him.

In the evening hours, the silence of curfew brought anxiety alongside.

Dario Rossi: That silence is surprising. It also causes a certain kind of discomfort or fear that again needs to be explained in some way, why it is like that, why there are no people, why there are no sounds.

For the families of people with autism, the anxiety was the realization that the adopted Decree actually accepted only 2 of their 4 requests.

Dario Rossi: We received some hygiene and food packages, and we got a permission to go out at a time that suits the child, we still do not know what kind of reaction to expect if a family member living with a child or a person with autism becomes infected, and what to do if a person with autism becomes infected and gets sick.

Tamara Stojanović: I have absolutely reduced contacts. I myself did not want to get infected either, nor to get in a position to get any of us infected, because that would simply have far-reaching consequences to which we wouldn’t be able to simply find an adequate answer, so now how and what to do in case I get infected, or my mother, or my sister, what would happen in that case?

Such a situation would be far more complicated than the one in which a child without developmental disabilities or a single parent of such a child becomes ill.

Tanja Stojanović: Maša, for example, doesn’t know how to breathe on command. She doesn't know that, and that makes it complicated for the doctor, when she listens to her, to be able to hear if she has anything on her lungs or not. And a lot of these procedures, all other imaging procedures, X-rays, some magnetic resonance imaging, scanners, all that mostly takes place under anaesthesia.

Dario Rossi: A person with autism really finds it difficult to accept any medical treatment, it is difficult to simply pass by a hospital, let alone enter a hospital when they realize that it is indeed a hospital. Everything that is a routine medical activity, such as drawing blood, measuring temperature, everything else, measuring blood pressure, ECG, etc., people with autism perceive that as an attack on themselves and react very intensely.

Associations dedicated to autism believe that the inclusion of the Centre for Social Work is necessary, but also that in order to treat Corona it is necessary to form special hospital units for the treatment of children and people with autism.

Dario Rossi: We had in mind that that would be troublesome for people with autism, but also that it would be a burden to the entire medical system. Our specific proposal was that in Belgrade, the facility of the “Predah” program, which is located in Shakespeare Street, which is again located near the clinical centres, be trained to receive such children. It was essentially accepted, presented as far as I heard to the Crisis Headquarters in Belgrade, but nothing concrete really happened.

Coronavirus is still threatening, but according to the doctors, the situation is more favourable. The gradual abolition of emergency measures, as well as the abolition of the state of emergency, brought new problems for the families of children and persons with autism.

Dario Rossi: It will be a big problem when all this is over as well, to bring them back to normal. It's not like they have some kind of a switch, so we can just switch it and it’s freedom again. This has been going on for too long. This way of life is now becoming a kind of routine.

Snezana Maksimovic: It will take us I don't know how many months to establish a normal rhythm of life for them.

Dario Rossi: Some children are already shutting down, some children are developing a fear of open space, of going out. These are very serious problems that we have no help for.

Nenad Glumbić: When their state of emergency was declared, in some federal states in America, behavioural therapists were declared essential therapists who must proceed with their work.

Dario Rossi: There are 42 psychiatrists in Serbia who deal with child and adolescent psychiatry, that is one in 31,200 children. You do not have professional help, someone to advise you, someone to observe your child and help him to handle that routine change in the right way.

Support services are not sufficiently developed, and the existing ones are not accessible to everyone.

Tanja Stojanović: Now I have a dilemma as to how we will organize ourselves because Maša needs 24-hour supervision, she cannot stay home alone.

The lack of funds has so far been the answer to the question why the legally provided service of personal companions is not available for everyone. Accommodation for adults with autism is one of the burning problems that, despite promises, is by no means being solved.

Tanja Stojanović: I am not sure how much understanding there will be and whether something will be initiated.

Nenad Glumbić: Increased public interest in a topic is always short-lived.

In addition, short-term attention seems to count on short-term memory. Years of promises that for starters a register of people with autism will be formed, in the meantime have been passed as a law, but has not been honoured either.

Dario Rossi: In addition to the legal obligation to know how many children with disabilities there are, we still talk about it as something that does not exist, we argue about it as it’s something, you know, like a made up theory, it is impossible that there are this much, you this, you that... So we are completely on some amateur level when it comes to dealing with serious life matters.

Snezana Maksimovic: In order to know how big the problem is, we must first know how many people we have with autism.

Nenad Glumbić: We can already predict with very high reliability what the actual number is. About 1%. You know how I know that, because these epidemiological researches have been done in many countries and what do they show – that there are no differences between the regions.

Dario Rossi: It's a kind of epidemic or pandemic that you don't talk about or do nothing about, you know. So this is also an opportunity for this pandemic to draw attention to the existence of this other one that oppresses us.

Snezana Maksimovic: I am not an optimist, I must tell you, of course we live in a poor country, so the vulnerable groups are even more vulnerable. I hope that we will have at least some more acceptable reaction on the street.

One thing is certain - whether dragonflies, as people with autism are called around the world, will remain trapped in Serbia even after the state of emergency - depends on us as well.

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