Tragedies that the State Won't Know About

16 Feb 2009

By Emilia Chiscop

The family of a child suffering from autism has launched a public awareness campaign dedicated to people with autism. In Iasi there are 310 children diagnosed with autism. But doctors say that the real number is much higher. The number of the newly diagnosed cases has doubled in the last three years. Currently, the Romanian authorities are taking no action for these children: there are neither diagnosis centers, nor state-financed treatment institutions. Parents have been struggling on their own, in a haze of confusion and despair, with only the support of a few NGOs. The ABA therapy, considered to offer the most chances of recovery can only be practiced at home, with huge monthly expenses: 2000 Euros (four times more than an average salary in Romania). Teacher Mihaela Cuzuc and priest Gheorghe Cuzuc, George's parents, have been calling on people and institutions which can help their son and other kids suffering from the same devastating illness. Find out the impressive story of three kids with autism and the great difficulties their families have been coping with.

George, Maria and Robert. Let's take a look at their story. This is the story of hundreds, thousands of kids with autism and probably many others still undiagnosed, but who are too few to matter in statistics dominated by cancer, anemia or AIDS. This is the story about children born with no rights, kids with "luxury" illnesses in a poor country. It is the story about the desperation of parents who grope in a mist of poverty, confusion and lack of information, giving up their dreams, selling their goods, imploring rich people to give them money in order to save their children. It's the story of mothers with no guilt but weighed down by feelings of guiltiness and shame for having given birth to babies whose minds wander in other worlds, and for that reason, they are labeled as "mothers of the handicapped." George, Maria and Robert don't understand anything about all these things. Some would say that this is their only luck. However, first of all, their luck lies in having super-parents who have been trying hard to fight against the cynical system, the authorities' carelessness and the mentalities of most of us.

"They must not be ashamed"

"We want other parents to know that they can succeed! They must not be ashamed", says Mihaela Cuzuc, George's mother, who founded "One more chance" Organization in order to help her little boy, as well as other parents with children suffering from autism and hereby to give a deeper sense to the cross her family carries.

For these parents, fighting with the system is like a Sisyphean struggle, from the time of the diagnosis to the recovery efforts. In many cases, in the beginning, kids with autism are first diagnosed with retardation, a developmental disability. That was the case of Maria, the only child of Claudia and Romeo Ghinea, she – a teacher of Romanian in Iasi, he – a lecturer at the Faculty of Electronics. Autism, this neurobiological illness of which the causes of which are insufficiently known, is not at all explored in Romania, where there is no public diagnosis center. It is just like it wouldn't matter for the authorities, who seem to consider it as a rare and unimportant disease compared to the Romania's problems and possibilities. "I went with my daughter to a psychologist when she was only 9 months old, but I was told that it's me who had mental troubles. Afterwards, I had her consulted by another psychologist before she was two years old, while she was hospitalized for an infection. I suspected something was wrong with her as she wouldn't talk at all or look at us or point with her finger", remembers Maria's mother, who was calmed down by doctors who said her daughter had a little lateness and, consequently, should be stimulated more intensely. The little girl was finally diagnosed with autism at 2 and a half years, in September 2004.

Another wrong diagnosis was the case of Robert Gherca, now age 13. After being diagnosed with deafness, because the boy no longer reacting to stimuli, imitating anything or uttering anything, even if he was past 3 years old, he was eventually given, at the age of three and a half, the correct diagnosis: autism. All this time, Robert's parents had been wondering how their child became deaf all of a sudden, though before he was one year and seven months he could hear and talk, but gradually he began to forget words one by one every day, retreating more and more in his world where his parents had no access. "If, nowadays, people began to know few things about autism and the first steps concerning therapies were yet taken, imagine the situation 10 years ago, in 1998! – it was a huge black hole", explains Carmen Gherca, Robert's mother.

An expanding disease

Important steps forward have been made, but neuropsychiatrists admit to the fact that it is still difficult to diagnose autism. "We can still talk of under-diagnosis, and there is confusion concerning statistics", says Ioan Arsene, neuropsychiatrist within the Ambulatory of "Sf. Maria Hospital". In Iasi, the only data about children with autism are provided by the Directorate of Social Assistance and Child Protection (DASPC), an institution that issues certificates for disabled persons, on the basis of which parents receive from the state the caregiver subsidy of 500 lei ($150). This is the only financial support that the state grants to these people who need about 1,500-2,000 Euro a month for the most popular recovery therapy, ABA. In December 2008, Iasi county had 310 registered children with autism for a population of 800,000 inhabitants. This figure, which is lower than that of 2006, when statistics listed more than 400, is much below the actual number, doctors say, as they speak of a visible increase of autism incidence. "Now I diagnose 2-3 new cases of autism per week, compared to 2-3 a month, years before", says Dr. Arsene. The increase of the disease incidence can also be seen, at a closer look, in DASPC documents, if we follow the new diagnosed cases in children under 7: from a new case in 2002, we have come to seven new cases in 2003, another 14 in 2004 and, in 2008, another 29 were registered. Concerning the total number of autistic persons, which is lower in 2008 than 2006, there is another explanation: many turned 18 years old and no longer entered the statistics of the Directorate of Social Assistance and Child Protection. This is absurd, as they are no longer listed in statistics about autism because, in Romania, autism is not recognized as an adult disease. This is how, when reaching the age of 18, Romanian autistic persons turn, by miracle, into schizophrenics, which engenders, according to the legislation, the loss of the right to a caregiver. From now on, they have two chances, both disastrous: confinement in a psychiatric establishment or a purely biological existence at home, with no social component and no subsidy from the state health system.

"The boy of a doctor from our Association, who had been left by her husband because of the illness of their child, stays home all the time with his 76-year-old grandmother. You can realize that he is not in such a good state", says Carmen Gherca, Robert's mother, president of Iasi branch of the National Association for Children and Adults with Autism (NACAA), who founded this organization in order to get things moving.

Diagnosed on April Fool's Day: "Unfortunately, it was no hoax"

Another initiative in order to fight the system, to change mentalities and to advise parents about how to raise funds for therapy, is that of George's mother. The child of Mihaela, teacher of English, and of George Cuzuc, priest, was diagnosed with "elements of autism" in 2005, on April 1st, April Fool's Day. "Unfortunately, this was no hoax", the mother jokes bitterly. The child they wanted so much and who was born – just like Maria Ghinea - after lengthy fertility treatments, had a normal developmental rhythm until the age of one year and a half. Gradually, George kept forgetting some known words, no longer imitating, no longer reacting. "I remember how he would go into another room and stay in the dark. We were shocked that he was not afraid of the dark," the mother recalls. The diagnosis was confirmed by doctors from Bucharest. "And what should I do, doctor?," she asked in amazement. "Just love him, ma'am. Just love him," he said. Mihaela loved George whatever the doctor would have said, so she felt offended. However, one of the popular theories in America in the late 1950s, after the disease had been discovered by Leo Kanner in 1943, linked the occurrence of the disease with a mother's lack of affection. Even if doctors are aware, now, that the theory is out-of-date, they do not realize what feelings of guilt they can induce in mothers when they utter such advice which, as Dr. Arsene decodes it, means "Keep loving your kid, accept it even if it is not as you would have wished". For love of George, Mihaela and Gheorghe Cuzuc moved from Vaslui town to Iasi city, where ABA therapy is within reach. Before that, they searched the Internet, accessed forums for parents trying to find information. They knew nothing about autism, and doctors only told them to love George, nothing more.

The monthly cost of the therapy is five times higher than the income.

Doctors assume their powerlessness and have their claim too. "I don't know where to guide them, all I can say is to recommend them what we can do in our institution – logopedics, kineto-therapy. We guide those with minor deficiencies to regular kindergartens, and those severely disabled to centers within charity institutions, but the real therapists remain the parents," says with an embarrassed shrug Dr. Cornelia Szinger, pediatric psychiatrist within "Ghelerter" Mental Health Center in Iasi. "It is indeed confusing for parents. I do guide them to charity foundations, but the main therapists are still the parents. An autistic person needs an adult who should be alert while the kid's awake, never leaving it alone, always keeping it doing something," Dr. Arsene added. The absence of guiding by doctors and the disorientation are the main factors that terrify parents after hearing the diagnosis. "What does autism mean and what should I do?," Claudia Ghinea asked the doctor who gave her the verdict: "Nothing. Go ask for a handicap certificate". Shocked by the answer, she now recollects, she reacted like a robot. "It took me two days to get the papers for my daughter. I felt as if I was in a trance", Claudia recalls. There followed a night of Internet searching. "Do you remember, Romeo? You almost fainted and said that could not be possible", she told her husband. Their life was no longer the same. They chose ABA, a therapy about which they found out that is 50% successful if practiced intensively, individually and promptly. But the therapy, that reached Romania in 2003, was inaccessible for them. There was only one center in the country to perform it - "Horia Motoi" Center in Bucharest, founded by the parents of an autistic child – but the waiting lists are very long. Maria was almost 3 and she could not wait for another 2-3 years. One single day without therapy meant less chance of recovery. The only option – therapy at home with exorbitant costs: 1500-2000 Euro/month while the only family income was Romeo Ghinea's salary from the University, 1500 lei (350 Euros) and the caregiver allowance, 500 lei (120 Euros) collected by Claudia who gave up teaching in order to stay with Maria. Therapies are not deducted by the Romanian health insurance system since they are not considered as medical treatments. After public fund-raising campaigns, requests and entreaties, they gathered just enough to start. Later on, a businessman offered to sponsor the therapy, but Maria's parents fear this is not going to happen again given the economic crisis. The "Motoi" Center provided an expert to train tutors – recruited from among students at Psychology and Social Assistance – who were to work with Maria. Before starting with ABA, that is more than a year, the little girl went to two foundations in Iasi, but the progress was hardly noticeable.

The ABA miracle: George began to speak

Maria's story is similar to George's case, with the difference that his parents managed to enroll him at the "Horia Motoi" Center. "But in his case, the therapy practiced in the Center didn't work", says Mihaela Cuzuc, underlining an essential thing highlighted also by doctors: "What is fit for a child is not fit for another. And what is fit today might not be fit tomorrow", says Dr. Arsene who thinks that recovery therapies have to be combined and perfectly adapted to every child. "In Romania, there are no specialized centers, therefore parents use teams of specialists, ABA therapists, occupational therapists, etc. who don't know about each other. They should collaborate and evaluate the child together", says Dr. Arsene. "Behavioral therapies should be combined with the emotional factor. Parents must be open-minded and when they notice no progress, they should know that something is not working and make a change", adds Antoaneta Zamfirache, psychologist at the "Ghelerter" Center, specialist in music therapy and author of a computer-assisted learning software which can be easily learned by autistic children with good visual memory.

Now George is practicing ABA at home, in Iasi. His therapists, all students, trained by his parents who also pay them, work with the kid 8 hours a day, 5 days a week, teaching him how to dissociate between objects and name them. Therapy programs are determined according to the child's home environment and his development stage. He can be taught, for example, first the colors, then the shapes, then how to dissociate an object from another, then go to the toilet or ask for a glass of water. A new lesson won't be taught until the previous one is fully learned, which means that you may strive a whole week and even few months to teach the child how to make the difference between a circle and a square. "These kids are heroes. They hold on eight hours a day to a very strict schedule, when the tutors can't cope with more than four hours", says George's mother, seeing his little boy rush in the room during a break asking her to play some music. He made huge steps ahead in the last three years, says Mihaela, who advises all parents to get informed, raise funds and try ABA. The music starts and the kid goes to the window, where he listens quietly and looks out and he seems to love doing this.

Every three months, George is assessed by the only Romanian ABA expert, Alina Bobarnac, settled in England many years ago. The same expert assesses Maria and afterwards trains the tutors for the next three months. But the expert's visit, in the absence of which parents say they could not go any further, because the therapy requires much refinement, costs 12,000 euro a year. Only the parents know how difficult it is to get this money, but it is worthwhile, they say. "George goes to the toilet and when he is thirsty he takes the water all by himself. You don't realize how much this means", says Mihaela Cuzuc. "He understands much more than before, he began to speak, he is sociable and loving, he has a greater capacity of self-control, which is hard even for an adult", says Dan, student at Psychology, one of the George's tutors, who goes with him to a nursery school in order to help him socialize. From time to time, Maria goes with the parents to a catholic nursery school, where an educator accepted her and taught the other children to be more tolerant with their little special colleague.

Only 47 out of 310 children diagnosed with autism go to school

What George and Maria's parents want (and perhaps all parents of children with autism) is integration in a nursery school and regular school. But they know that this is possible only if the little ones reach a certain level that allows them to be accepted by colleagues, to participate in group activities. Acceptance of children with special needs in a regular institution is difficult: first of all, people reject them labeling them as handicapped, second, in state nursery schools there aren't enough places even for "normal" children. "The answer I always got was that they have 'no vacant place'", said Mihaela Cuzuc. According to the law, all children of pre-school age must be admitted in the closest nursery school, so Mihaela didn't give up and advises all parents to do so: "I asked them to state their refusal in writing."

On the other hand, some doctors and assistants who work with autistic children believe that their integration in a regular school in Romania, where education focuses on information doping, may even be detrimental to them. "The Romanian education system gives hardly any chance to these children. It is too elitist and there are no support personnel. We have often mediated integration of some children in nursery schools, but it is very hard, groups are too large, with 30 kids each. This is not necessarily a lack of willingness, it is the system that must be changed", says Alina Puscasu, rehabilitation pedagogue for "Star of Hope", a non-governmental organization that develops rehabilitation programs (individual cognitive therapy - the PECS method based on pictograms – logopedics, kineto-therapy, group therapy) with 60 children and adolescents with autism, Down syndrome, cerebral paralysis, as well as counseling programs for their parents. "You cannot throw your child in a regular school as long as the system does not allow it" says Dr. Eti Vasilache, chief of the "Penilla" private center that hosts 25 children between 3 and 8, most of them suffering from autism. The Penilla therapy is of Swedish inspiration, "a combination between the Teach method and the ecologic method". "Starting from the child's strong points in order to develop the weak ones. In other words, go down on his channels, do not dig yours. It is an individualized treatment, like a suit in the hands of the tailor", describes Dr. Vasilache. It is at Penilla that Robert Gherca took recovery sessions 13 years ago. "When ABA therapy reached Romania, Robert was already 6 years old. ABA was too late for him", says his mother, Carmen. For many years, she would take the child to "Penilla" where he had an 8-hour program, and says that "there were some very good years: although he did not recover the verbal language, he developed the non-verbal one and now communicates by use of objects, photographs, understands writing, even handwriting, and works on a computer". Now, Robert goes to "Ancora salvarii" (the rescue anchor), a non-governmental organization that works with adolescents, founded by a Dutch social assistant who came to Romania 11 years ago. The therapy used is called Teach, combined with a newer method, explained in the book recently translated into Romanian - "Give Me Five" - which deals with teaching the child how to manage on his own by answering to five simple questions: where, how, what, who, when. "We prepare the little ones for school, but we opt for special classes for autistic students within normal schools. We have two children who, in the Netherlands, would manage quite well in normal schools, but the Romanian system is too elitist", says Inge Smelik, claiming that a good start is the creation of the two special classes for children with autism, attended by 10 of the "Ancora salvarii" beneficiaries, including Robert. However, the degree of school enrollment of autistic children remains very low: out of the 310 registered autistic children, only 24 attend a public school and another 23 attend special classes.

"People look at us in a strange way, projecting their perception upon us too"

"What will become of these kids when we are gone?" that is the question that terrifies the parents who try desperately to convince the authorities that their children, too, have the right to life. "Inca o sansa" ("One More Chance") Association, set up by George's parents, not only aims at counseling parents, organizing a day center, training ABA tutors, informing even family doctors (distributing, under the consent of the sanitary authorities, leaflets containing the main autism identification signals). Teacher Mihaela Cuzuc hopes to convince the authorities to legislate a modality to deduct the costs of the therapy but also to request state schools to enroll students with autism, as happened in America following pressures by parents in the early 70s. "I want to tell the parents, first of all, not to be ashamed! People look at us in a strange way, projecting their perception upon us too", says Mihaela Cuzuc who hopes that her Association will find the answer to all problems her families cope with in their fight against autism. There are parents who need therapy themselves, mothers who can no longer bear the stigma and guilt (induced by the spouse too). Many couples fall apart, shattered by efforts that seem useless, since recovery progress occurs extremely slowly, it is sometimes late and hardly noticeable. Parents also find it difficult to manage the education of their normal kids, the brothers and sisters of the children with autism. "Mom, when is George going to get well?", 4-year-old Antoaneta asked her mother one day. "Much attention should be paid to the other child so that this one has no behavior problems. That would be too much", says Mihaela Cuzuc.

The fight for protected workshops

In Gherca family, 5-year-old Paul is very careful with his 13-year-old autistic brother. "Robert grieves for him, shares everything with him and when Paul is away he comes with his photograph in his hand, as if asking where he is", their mother recounts, aware that "Robert's disease changes Paul too, but we must take care that he should not feel condemned". A few years ago, Carmen Gherca founded in Iasi a branch of the National Association for Children and Adults with Autism, ANCAAR. This organization lobbies for the access of children in regular schools, but also for the recognition of autism as an adult disease. According to the legislation, in five years Robert will become a person with schizophrenia and lose the handicap status.

ANCAAR collaborates with "Ancora salvarii" in order to establish day centers for young people and adults with autism; if we admit that there are some organizations for children, this is not the case for adults, except for a mobile team of the Directorate for Social Assistance, which provides home assistance for 153 persons with various handicaps, a promising but feeble start. "We are pushing for the elimination of discrimination between caregivers of persons with autism, who receive a state allowance of 500 lei, and foster parents, who receive 800 lei plus week-end extras", says Carmen Gherca. Like Mihaela Cuzuc, she wants to develop information campaigns among teachers and family doctors: "Most of the people hardly know anything, have preconceived ideas that nothing can be done for persons with autism, which is untrue". The models from abroad prove that anything is possible and that their integration is worth fighting for. "I went to Lisbon and saw that all children are integrated in mass schools, which changes the mentality of others, who get used to accepting them. I saw centers for adults where persons with autism were assembling bulb sockets and earned a salary, and felt useful. There are lots of jobs focused on routine and repetitive operations which the autistic persons can carry out, for instance photocopying", says Carmen Gherca. In collaboration with Ancora Salvarii, ANCAAR hopes to set up protected workshops for adults as soon as possible. "The town hall promised to give us a room", states Inge Smelik, who believes that occupational therapy might offer these people an increase in the quality of life, and more autonomy and meaningfulness. "This is what parents should strive for, that their children with autism have an independent life. They must be accepted just the way they are, different. Why should they be like us? In many ways they surpass us: we are not capable of their candor and sincerity and do not know how to be happy, or take delight in simple things", Inge says.

Back home, in an apartment, George learns that the nose is for smelling and the ears for hearing. Robert learns how to handwrite his name and Maria sings softly, almost in a whisper "Next time, next time/We'll do it cool and fine!". Maybe that will happen when the authorities will lend them a hand. Until then, their fate lies in the hands of the parents and the few NGOs, where goodwill is sometimes overshadowed by amateurship and lack of money.

Used with permission from Emilia Chiscop and Ziarul de Iasi. Copyright 2009.