There is much talk about autism lately worldwide, amid higher incidence and growing efforts of some countries to increase and support therapy provided to affected children.
In Romania, the battle is even tougher, with no state support for the research and therapy costs and with NGOs and parents fighting to provide the therapy that is so much needed for the autism spectrum disorder.
Autism Voice, an NGO committed to recover autistic children and training ABA specialists, has recently launched ”The Word that brings more Words”, their first SMS fundraising campaign, intended to reach 50,000 text messages per month in order to cover therapy costs for the 200 children from their 2 centers.
We talked to Oliviana Giura, therapist and founding member of Autism Voice, about how much this targeted therapy matters to the autistic children and their families in the attempt to overcome the disease and to help children become independent adults. She called on private persons and companies to join the fundraising campaign, also inviting everyone to come to the therapy centers to see the work here with their own eyes.
„A great part of the children with the autism spectrum disorder manage to learn the language, but it’s up to numerous other factors, for instance, on when they start therapy, for there are some abilities that do matter in the first years of life, and also it depends on the degree of abnormality. If we talk about other morbidity associated with autism, things are not so well. But, compared to some years ago, when therapy for autistic children was scarce, now most of the children under therapy learn to talk and this is a big asset for them”, said Oliviana Giura.
The case of 4-year-old Dani Savin speaks for itself. Before turning 2, Dani’s parents noticed some concerning signs, he had no visual contact, constantly shaking his hands, tiptoeing. They found out about the Autism Voice center and came for an assessment. Dani has been under therapy since then and he is on the right path….now he has visual contact, he wants to play, he even has hobbies and favorite toys…train sets. Of course, there still is a long way ahead, but the therapy has made the difference so far.
However, therapy is hard work, not to mention the financial distress for the family. An autistic child needs at least 4 hours of therapy per day in child-therapist sessions, not collective ones, so, funds and infrastructure are needed.
“Indeed the state must get involved more. For instance, I gave up work to take care of Dani, and I have an elder child, so we are a four-member family living from just one salary,” said Dani’s mother, revealing the value of state allowance is below the monthly therapy costs.
She called on donors to join this cause, “if they want to help our children, to give a EUR 2 SMS”. “We ask people to think that it’s hard even if you have a child with a cold, not to mention our situation, we feel powerless that we cannot help them more. We ask people to send a SMS if they want to help our children”, said Dani’s mother.
Autism Voice was born in 2008, with all three founding members graduating in Special Psycho-pedagogy. They started to work with autistic children since college during a time when there was just one therapy centre for children with autism in Romania, which had not enough seats. Most of the parents who had autistic children used to bring foreign therapists to work with their children, from Israel, UK or U.S.
“So, this is how we learnt to work with these children and later on we decided to establish a centre in Romania. We started from something small, we have never thought we’ll accomplish a project on a larger scale. But things have somehow grown organically, we started from a small centre and now we have two big centres in Bucharest,” Oliviana said, adding that expansion is sought as well countrywide, for there is need in other towns for such centres, for more psychologists, and psychiatrists for children.
Call to companies to take a closer look into the autism cause
The ongoing SMS campaign has the target to reach 50,000 text messages per month in order to cover therapy costs for the 200 children from their 2 centers.
„It is our first campaign based on SMS, we have wanted it for some time. We hope it will pay off. The target of 50,000 text messages might seem impressive at first sight, but if we do a basic sum in our head we may find out that we all send a wrong SMS from time to time or spend 2 euros on things we don’t actually use,” said Oliviana.
The campaign will be extended after December 31, the text messages are recurrent. „If some one wants to give up texting, he/she can do it by a simple message: Stop Voice. We hope as few people will give up though. Every drop helps, every sound, every syllable, every word…”, Oliviana said, also announcing more artists will join to endorse and promote the campaign and that their names will be revealed at the right moment.
Besides donations from private individuals and the involvement of famous people, an extra helping hand would be needed from big multinational companies, for instance, which can also make a real change through their CSR campaigns.
„It’s quite difficult to reach the big companies, we had multinational firms supporting our cause, this very centre is equipped and furnished with the funds from multinational companies. But their procedures are rather cumbersome, it’s hard to find a CEO willing to listen to what you have to say, their time is precious and I can understand and respect that.
And they do have open calls for various projects (…) but maybe I would like a wider openness from them, more transparency on the selection procedures of the winning projects, so that we can know exactly how to approach the situation and handle things in the right way. I presume you cannot believe something unless you see with your own eyes, you cannot actually empathize with the cause and understand the need. So, our centres are always open to anyone wants to see our work here.
A paper with some words to describe an activity can be easily questioned. But if the CSR representatives of the companies came here at the centre and saw the children for just 10 minutes, they could understand there is a need to help these children, for, after all, they have all resources to help.”
No official statistics on autistic children
There is no official statistics on how many children with the autism spectrum disorder are in Romania. According to the Autism Voice founder, there are hundreds, maybe thousands of children who are not properly diagnosed although they have an autism spectrum disorder.
“World statistics though says that 1 in 59 children is born with an autism spectrum disorder. That’s impressive (…) and its rate is on the rise. Autism is not something we can control, is not due to vaccines, or to TV, or because mommy started work too early or she didn’t love her child enough over postpartum. These are just harmful speculations. We don’t know yet why children are born with autism. The incidence is indeed higher among boys, this cannot be explained either. But researches worldwide are doing a hard work to investigate the causes and I am confident they will be eventually detected in a few years,” Oliviana Giura pointed out.
In Romania, an unofficial statistics points to around 40,000 children with autism spectrum disorders.
Therapy is vital
Until precise causes of autism are determined by scientists, a fact is clear: therapy is vital for the development of an affected child.
“Until some years ago, it’s possible the number of autistic children should have been as high as now, but many of them were wrongly diagnosed, as having severe mental retardation, for instance. A great part of these wrongly diagnosed children who in fact were suffering of an autism spectrum disorder were lots on the way precisely because they did not get the specific therapy.
A child left without therapy is a 100% dependent adult, who doesn’t talk, who has no abilities, although he/she might have had them.
Children with autism have no physical problems, except for the ones with co-morbidity. But, in the absence of therapy, they can lose their voice, for instance, not because they would not have the ability to talk, but because they are not stimulated properly. If we don’t take advantage of that plasticity the brain has until the age of 7, millions of trains to a normal life for the autistic people will be lost.”
During out conversation, we were ‘interrupted’ several times by a teen boy coming in and out in the room. Oliviana explained to me: “Take him, for instance, Victor, is a teenager with autism, but who has undergone therapy since an early age and he ended now working at the center. He’s helping us out with the charts, with printing documents. Because he has been through early therapy, he is now a happy case, he is a functional adult.”
She also told me she had had another kid in therapy, now he is a teenager, having friends, going out, playing computer games, shining in school contests and having self-control against some bizarre urges.
“Of course, there are cases and cases, but these success stories motivate us. Unfortunately, Hollywood and sensationalism have shadowed somehow what autism really means, inducing the idea they are all geniuses or they would not have feelings, which is false.
Of course, there are autistic children or the ones with Asperger syndrome able to develop some mathematics abilities, to perceive things differently. Some can draw by heart in a fantastic way, there are autistic adults who are excellent coders, have good computer skills, but we have to understand this is a limited category. Not all autistic children will become successful coders at Oracle. This brilliance part has been much speculated for commercial purposes, so the public opinion would feel like saying <OK, but these are genius children, why should I donate for them?> It’s not like this, most of children with autism spectrum disorder are struggling to say <pufuleti/cheese doodles>, or “mom, please give me the candy> for one or two years”.
Autism Voice is applying the Applied behavioral analysis (ABA) in the therapy with autistic children, a therapy that studies the human behaviour and helps children learn, for children with autism spectrum disorders cannot learn naturally from the environment.
„ABA is practically fragmenting each learning sequence and turning it so that the child could assimilate it and develop the necessary abilities that he/she cannot assimilate otherwise. Adaptive behaviours don’t appear spontaneously in autistic children, both their verbal and non-verbal language is very affected. So, the undesirable autistic-like behaviours, excessive behaviours, self-stimulatory behaviours are replaced by proper behaviours, communication and social interaction. Human behaviour is mainly mathematic, based on a antecedent-behaviour-consequence scheme.
If I enter a room and switch on the light and the light won’t come on, I will repeat this operation two or three times and I will probably give up for I’ve learnt from the environment that is something wrong with the switch. In case of autistic children, the usual behaviours must be rewarded, enhanced so that they come natural. They are broken in smaller sequences and then turned into a whole.
To be more explicit, neurotypical children are learning naturally from the environment to talk, to make sentences, autistic cannot do that, they have to do therapy to learn every word, every sentence”.
Social insertion between law enforcement and acting human
Theory is good, the practice is usually killing us, reads a famous saying. Autism-related issues make no exception, at least in Romania.
Although there are laws stipulating the procedures to integrate children with autism in the educational system, they are not fully and successfully integrated or accepted in schools or kindergartens, and this is mainly due to the lack of an integrated method of tackling autism cases.
“There are some rules to integrate the children with autism, compared to several years ago when this was mission impossible, we are well nowadays. But they should be integrated with their shadows as well, the caregivers, because they cannot make it in school without these shadows.
No law can force teachers 100% to accept an autistic child. Even if a court orders for his being accepted in the classroom, he can be abandoned, isolated by colleagues, teacher. School is very important here, but the teacher should be part of the therapy team to apply ABA methods with these children with autism.
Many times, teachers are willing to get informed on the specific therapies to apply them in the classroom, they even attend training sessions on their own expense. But the state’s involvement would be more useful, to support the existence of a psychologist in every school, or of an itinerant teacher. As it is now in the Romanian schools, only one therapist in charge of 20 schools, is a mock, we are just pretending of approaching this sensitive issue of children who have behavioural disorders, autism or ADHD.”
The Autism Voice founder also lobbied for the integration of the autistic children in the public schools. “They should be naturally integrated in public schools. The ideal would be that every school has some special classes as wel, the so-called integrated classes, consisting of 6-10 pupils who should have 2-3 special education classes adjusted to their needs and the other 2 classes with the rest of the neurotypical children, for example to attend music, drawing or sports classes together with the other children. Otherwise, segregation is counter productive,” Oliviana said.
She also talked about a wider need in society for the children with autism, for their general social insertion, within the extended family, outside, on the street, in parks, etc.
“The extended family is another major topic in the entire therapy process, the information on what autism means, how it works, how to behave with an autistic child must reach all members of a family, not only parents and brothers, but also to grandparents, uncles, aunts, cousins, all who come into contact with the child. Moreover, there is this problem that families with autistic children are isolated by thee society, somehow society is punishing these families for their children, they lose their friends who avoid inviting them over or visiting them.”
Autism Voice is managing the case of 400 children with autism spectrum disorders.
“These children must be endorsed, they need therapy. The costs are high, the parents’ incomes are usually low. So, we need the support of all actors, state, private companies, physical persons. If each of us were willing to give 2 euros per month, I am convinced things would be better, I know there many other social causes, but these children are also part of our society, we have to help them, too. The deserve equal chances, they are all entitled to the best therapy.
I would like to depoliticize all that means social service and to help as many children as possible and to serve as a model for others. The state, likewise the private business environment can help, they have the necessary tools for that. We did other campaigns, and we’ll do some more, it was the only way we managed to accomplish things. But we also need the state to prioritize certain things, which must not be only on paper, they must happen in real life, once and for all”, Oliviana Giura concluded.
You can help this cause and donate EUR 2 by sending the word VOICE to 884.