“As a parent of an autistic child, who has lived without support of the system and without my legal rights since my son was three and a half years old, I realized during this interview that it is a kind of torture. I do not know how much torture differs from violation of rights, maybe the word is too strong, when one says ‘torture’ the first thing I think of is beating, sexual abuse, but when violation of rights lasts so long, it is then some kind of torture. I have been tortured for thirty-six years”. “My son Veljko is autistic and forty years old”, says Vesna Petrović. “I practically passed all parental stages that are terribly difficult, because autism is a very complex condition. When you say that someone is autistic, you know that his family is not autistic but that it lives in a very difficult, specific and always extraordinary situation”. Vesna is the president of the Board of directors of The Serbian Society of Autism. The association has existed since 1977 and was founded by parents of autistic children. She says that she did various jobs in the association, while learning how to communicate with the parents. “It is a very difficult and sensitive job”, says she. “It took me a lot of time to separate the emotional element from the professional. It is difficult when someone says about your situation ‘You are a mother and you have to do it’. That experience made me hesitate. When you come forward with a group of parents before experts or system representatives, there is always a situation when the parents are made reluctant by a sentence such as ‘Well, we have bigger problems, it’s not that difficult’ or ‘Why don’t you place him permanently in an institution?’, etc. Those are the sentences that mark your life, create a fear in a family that only gets stronger with time, because you know that one day – when you disappear and when your biological family disappears – that is going to really be true, and that your child will have to go to a home, to an institution. I think that a great deal of our parental situation is a consequence of the ignorance and negligence of the experts who communicate with families and who can be very brutal verbally. That thing still exists, although not as much as before, because we managed to create a certain sensibility although I am not quite satisfied with it nor are other parents”. Takeover of responsibility: Vesna Petrović mentioned some cases she met in her work, illustrating the problems of not only parents of autistic children but also of parents of all children with developmental difficulties. “We had a case of a 72-year-old mother who had her leg amputated; she came back home, her daughter is 42 and cannot take care of herself. The institution was full; eventually we asked a retirement home to take the girl in. Or the situation of a family where the father died and the mother was killed a year later. The child was 13. The state must take care of such a case, there is no other choice. According to the law, cousins are informed and if no one wants or can take care of the child because he did not spend much time in that family, then the state must take over responsibility”. State responsibility is all the bigger in so far as illness transforms the family’s social environment. “Your nuclear and extended family gradually abandon you after the diagnosis. You feel that as a parent, as a relative, and that is a period of a particular trauma because you are left completely alone and do not have any support from your closest ones”, says Vesna. “So you have a situation where your friends abandon you and do not come to your home anymore. Those who are sincere – which I really appreciate – say that they simply don’t know how to go about Veljko now, what to say, they are afraid of doing something wrong. I’m completely fine with that and don’t want them to stress themselves. I always say that my son catalyzed that situation, because there is always a core of people who remain, which I think is a normal thing in the ‘ordinary’ life as well. I find it slightly abnormal to have a hundred friends; if you have five or six of those genuine, sincere ones, then it’s a beautiful thing. And those friends like Veljko, like to see him and like us”. Schooling and strategies: Petrović says that education represents the most positive measure of inclusion of children with special needs into everyday life. Since 2011, those children can attend regular, but also special schools. If they fail, they can transfer from a regular to a special school. All three levels of education – elementary, secondary and higher – are open to them and she knows three young men who have graduated from university. Legal solutions are very good, but real life leaves much to be desired. According to the law, the children have the right to a personal companion (who takes them in and out of the school) as well as the right to an educational assistant (who helps the teacher with the program itself, if a class has several children with developmental difficulties). The assistant should visit children during classes and help them with their work but that does not really happen because there is no money for it. Personal companions are within the competence of the local government which mainly lacks the money for something like that, so that the majority of the parents have to manage themselves. ”A sad thing is that there is no survey or a register of the number of children with developmental difficulties in special and regular schools”, points out Petrović. “The state does not have a national register and does not know the total number of persons with developmental difficulties, and I’m not talking only about autism. We have been told for years that it would be carried out at any moment but nothing happens, regardless of the amount of pressure we apply. A serious state, one with a register, also has a strategy for the future periods of life of those persons. When strategies are being developed in this country, they are developed ad hoc, for all, but actually we don’t know how many of them there are. And that is also a way for the state to avoid many obligations and violate the rights of persons with development difficulties or with autism, by not adopting a strategy, by not knowing their numbers, how many of them are being educated, how many of them are forthcoming, how many autistic children we will have in the educational system in three or four years. However, the school system must be ready and the same goes for the social welfare system which has day centers for persons with autism and others (they are already teenagers and adults) but also permanent accommodation which represents a huge problem now (to put it mildly)”, Growing up and fear. According to Petrović, the biggest problem are autistic adults, whom she named “invisible people” in her many papers and congress presentations, given the fact that they are invisible within a system that finds no place for them. If they are lucky enough to be placed in institutions, those institutions are mainly of very large capacities. “I always wondered what highly trained experts do in those institutions if the standard for a special-education teacher is a group of forty people”, says Vesna. “I thought a lot about the girls and boys, friends of my son, who go to such institutions, but also about the people who work there. They burn out. I can’t understand why nobody else is seeing it as well. If an incident occurs in an institution, everybody goes vocal, says ‘that’s not alright, that person did this and that’ but they do not see that the system did not protect the employee who did something wrong. It does not protect us and it does not protect the people who work there either. And those people keep silent because they work there to have a salary, they must live on something. It is a vicious, difficult and bad circle”. Petrović says that recently she has started fearing for the future. “Somebody asked me if it was more difficult for me when Veljko was little or is it now, when he is 40. Frankly, I don’t even remember that early period because we had big problems, he also had a sleep disorder, and we were only thinking how to get through the next day. I remember that period from the moment my daughter took not only a part of the care, but also a part of the whole story, a part of the organization, although a little one, because my husband and me took care not to burden her too much. She helped us a lot. For a long time I did not think that it was so terrible regardless of the fact that I survived cancer and that I have had diabetes for the last 20 years, I was not afraid because I knew that I would make it through with my husbands and my daughter and that everything was going to turn out well for our Veljko. However, in the last couple of years, given that I ever more often meet the parents who do not have the privilege of having a second child or who have lost the other spouse, many of them being single mothers for a long time, I realized that my situation is very good in comparison to those who have been afraid for a long time. Mothers probably right after divorce, husbands mainly run away, although I defend them, but the statistics say so. I began thinking a lot about them, analyzing various laws, and I realized that the situation is really bad”. Assisted housing as a solution: When talking about autistic children in special schools, Petrović says that it was horrible, that people only talked about aggression and self-aggression, which was true, because that is one of the traits of autism, but never without a reason. “They have a communication problem, they have a problem if they are in a crowd, if sounds are strong. That is autism, it is like that, and that is why we have to work out individual plans as well as group ones. This is not difficult, I saw it in the day center that my son attends, they understood what is needed and they came to know those children. They have their instances of acting out, adolescence etc., but the people there approach them as parents. And autistic persons can be in the same group, they very easily integrate with the mild, moderate mental retardation, they function in an inclusive environment”. Parental opinion, thinks Petrović, is the most important thing in any situation. “When we take our son to the day center, we honestly present all his characteristics, what provokes his violent reactions and what makes him gentle, what motivates him and what annoys him…If the special-education teacher or the person working with them has that material then it is excellent. That is the type of cooperation that gives results. Such a document – that at the very beginning in some way defines the person who enters such an institution – can significantly ameliorate the situation and ease the job of those working there. That is why paying attention to what parents say is very important, but I don’t know why very often people just don’t do it”. Petrović thinks that the ideal solution would be if the whole group of her son could pass to assisted housing. The parents from the Society did not dare to venture alone into assisted housing because of the financing, because they had examples of similar projects that had been implemented but could only function for a year or two. During that period, the girls and boys who lived together found a sort of place of their own, some fell in love, some began working, but when the financing dried out they had to go back to their homes or, even worse, to institutions. “These are even bigger errors of the system”, thinks Petrović. “Then you sit down and talk to the parents and they are desperate and wonder if there is anybody caring out there. Whether someone cares or not for the sick, for the invalid, is not our business, it’s a matter of the state. The saddest thing for the parents is that they have a constant impression of being a burden to the state, as if our children and we are left to die, especially after the age of 50, although the parents become anxious even earlier because they see how things are going. We cannot reach the authorities, to talk about the problem, not only we, but also the parents of children with intellectual difficulties, with Down’s syndrome, with mental retardation, they all have the same kind of problem”. While mentioning the advantages of assisted housing and of institutions with small number of users, Vesna Petrović says that her family realized that her son Veljko, if he could choose, would surely prefer being with his company to staying at home all the time. “Imagine that someone is with you from the moment you open your eyes as a baby until the end of your life? When you think about that, you realize that this is really not alright. But it has to be this way in this country. When I visit my son’s group in the day center, they have been together for twenty years already, I just take a look at them and immediately know who is in a good mood and who is not. And it is unbelievable how well that group functions. It could be that way as well in a permanent institution if there was an individual plan, just like in a school where every teacher knows every child and says ‘He has a capacity but needs support’ or ‘He doesn’t need it, he’s a fighter’. One of the characteristics of autism is a communication problem, very often a single word or a hand gesture means communication, and this is very important if a person wants to say what hurts him, if he is hungry or if he is cold. This kind of questions is also needed in an institution, but is it possible to be heard or understood in an institution with a huge number of users?” Autistic persons have one in-patient clinic in Belgrade (in Bežanijska kosa) and one in Šabac. The capacity of each is fifty persons, which is very little in relation to needs. Petrović says that these are very decent institutions and that the managers and working personnel are indeed wonderful. “I have the most positive experiences with the clinic in Bežanijska kosa. There are seven-bed rooms, but the people who work there are totally correct, parents visit their children, take them home. A good cooperation was achieved. And why the rooms have seven beds, you should ask the ministry, not the manager or the staff. They are not decision-makers, that’s where the whole system has failed”. There are many big institutions for persons with intellectual difficulties, but even that is not enough, the premises are overcrowded and understaffed, and nothing is being done to change this situation. The law on social welfare stipulates that a small home for users under 26 has the capacity of 50 users, and for those over 26 – 100 users. “How are you going to keep a hundred persons older than 40 or 50, people who did not have any support service?”, asks Petrović, who also says that her first visit to such an institution was motivated by her wish to see the place where her son would end up one day. What she saw motivated her to fight for a change of the situation. “If we talk about human rights, we don’t see at all the rights of those people”, thinks Petrović. “The right to privacy – the existence of male and female rooms in an institution – is implied, but whether these are one-bed, two-bed or seven-bed rooms? What is private there, except the separation of female rooms from male ones? Only the parents who are not exhausted think about the rights of persons with developmental difficulties; those who are exhausted, and they are in the majority, have no strength anymore, they are spent. Moreover, that could be a topic for the parents who saw similar things in other countries, including the ones in the immediate vicinity. When I say to system representatives ‘We saw that and that in France and Britain’, they say ‘Please, don’t mention it, it’s far from us’. Then I say ‘Alright, we saw it in Hungary as well’, I insist on talking about that, but that is where it all ends, and so we have that story with a huge number of users in institutions and a small number of employees working with them. Yet, everything could be different”. Vesna Petrović says that many people think that ‘one should leave his child at home as long as he can’, which is something she agrees with, but she also thinks that at a given moment the child must go to a decent place which is at least similar to his home and where he has his company. She also believes that this place must be inclusive, that someone goes there, that something goes on there, and not to have seven autistic boys in a single room, which is terrible. “If we are talking about the smallest institution, it should be assisted housing, for example, eight people in one house or in one apartment, that is what I saw in Zagreb, quite close to us”, she says. “Deinstitutionalization in our country has not yet taken off, although it has been said that the state needs it and must solve it. Hungarians, for example, have resolved it quite well. They have assisted housing with ten users at most. An interesting thing is that the parents can be managers of those institutions, if they want it. The rules are quite good and strong. Those boys and girls go to bowling alleys, fitness clubs, ballrooms, social inclusion is quite normal. They even prepare their own meals. Now, someone could say ‘But they’re autistic, they can’t.,,’ Everybody prepares and does what he can. My son, in our home, can bring me everything when I tell him what we need. When he wants to set the table, he doesn’t take six plates or spoons at once but goes back for one fork, then for another, then for a knife, but what’s the problem with that? He spent his free time. Better that way than to run around aimlessly. There are objections: ‘Alas, it takes time, they are not focused, it’s a different situation at home…’ That’s why the parental opinion on how he behaves at home is very important. If you only take notice that he is upset, he is upset if he sits aimlessly, but if you give him something to do, that is important. That could also be a motivation, let those who like to eat first set the table, and when the meal is over, let them pick up dishes. It does not matter if it takes 15 minutes, it is important that he helps, receives all those ‘wonderful’, ‘thank you’, ‘you did it really well’, which actually increases their self-esteem. That cannot happen in an institution. Recently, I spoke with a woman from a foundation who told me that her child had been in an institution with more than 300 users but he lost weight there, had health problems and other problems, did not do anything, and became a completely lost person. Inclusion into an assisted housing program very much changed that situation, because everybody there has his duties and tasks. I am not blaming the people in institutions. They are overworked, without ideas, and don’t trust anyone let alone their users. One could say that this is the way it must be in this country but it does not have to be so”. Vesna cannot affirm that life costs in institutions are the same or bigger than the ones in assisted housing, but she says that the states that have abolished big institutions affirm they are. “And we constantly oscillate between these two things, assisted housing and life in institutions. In this country, everything is difficult when you see a person with a mental problem, autism, retardation, Down’s syndrome. Why is that so? It can also be very interesting, and beautiful for them. The main problem is the excessive number of users and the insufficient number of people working with them. Premises are another problem as well. If they are not sufficient, and you don’t have the sufficient staff either, it is practically impossible to work and achieve anything. Nobody has easy time there, neither parents nor users nor the staff. The system has failed in that respect, with all of us”. Support services: Vesna singles out uneven support services as another major problems of our system. “Had children and parents had all support services they would have had a better life”, she affirms. “Many parents tell me: ‘Don’t rock the boat too much, the state could get angry at us’. I do not see why the state should get angry at me, my 40-year-old son is at home. I do not need anybody to tell me ‘Hats off’, that is my son, but anyway, me and many families with grown-up children should certainly be provided with a family assistant, over the weekend, when the parents are already old, who could take that boy or girl out for a walk or for fun. What I dream of is having that support service, so that the parents can keep their children in their home as long as possible and be strong for such a thing, and that is only possible in that manner. We have a service called ‘break accommodation’; during the year you have the right to place your child for 40 days in that particular accommodation, it can be maximally 20 days in a row, the rest must be in several smaller periods. It is designed as a service when the parents are sick or hospitalized etc, but also to give them a possibility to travel, for example. That is an excellent service, Belgrade has it for 50 users, since April of this year, Niš has it as well, and it should also start in Jagodina. It is a service for all parents of children with developmental difficulties. Belgrade, with its two million inhabitants, surely has bigger needs, but what about smaller cities? That is why support service – a family assistant – would be precious; it could be organized by centers for social work, in a similar manner home assistance to the elderly is organized. A family assistant is a counterpart to ‘break accommodation’ in the cities where the latter is absent. The assistant can go to a family for 40 days for the same reasons for which children go to ‘break accommodation’. We too have the right to home assistance, but we have never profited from it because the means are insufficient, it cannot be done, they cannot achieve”. Petrović says that, unfortunately, one should perhaps, first of all, stress that the world statistics demonstrate that autism is on the rise. The situation must be identical in this country too, but we do not have a register. “We must have accurate statistics, we cannot get an institution if we are talking about 90,000, as the story goes, it is an imaginary number, and we did not obtain the accurate figure in Serbia for many reasons, errors or whatever”. The Constitution of the Republic of Serbia: “It does not matter if you have diabetes, autism or something else, everyone has the right to leave normally as well as a guarantee that our rights will not be violated by the state. This is essential. We have adopted the UN Convention on the Rights of Persons with Disabilities, the state has signed that and ratified. We were delighted and have expected that this would ameliorate the situation, but I do not see anything spectacular happening or that this documents means something to anyone and yet it is a very serious convention. Me and other parents, we have been thinking for a year about the Constitution of the Republic of Serbia. If someone does not understand or does not respect the UN Convention, why does not he respect this country’s Constitution which stipulates that every citizen of the Republic of Serbia has the right to health care and education, as well as the right to social welfare? The absence of deinstitutionalization and the fact that we still have institutions with 200, 300 or 400 users represent a violation of the constitutional rights to social welfare. As a parent of an autistic child, who has lived without support of the system and without my legal rights since my son was three and a half years old, I realized during this interview that it is a kind of torture. I do not know how much torture differs from violation of rights, maybe the word is too strong, when one says ‘torture’ the first thing I think of is beating, sexual abuse, but when violation of rights lasts so long, it is then some kind of torture. I have been tortured for thirty-six years”. Momir Turudić
