Interview With Tomáš Dostál of Paspoint, The Brno NGO Providing Support For People With Autism
Autism is a lifelong neurodevelopmental condition in which the brain is “wired” in a different way. Paspoint is a Brno social services organisation which provides support for people with autism, “at every point of their lives, from zero to 100 years old” and for their loved ones. Tomáš Dostál is the head of the organisation and, as a part of our series about autism, he answered our questions about his organisation and the current situation of social services for people with ASD in the Czech Republic. Image Credit: C. Béguet / Brno Daily
Brno, May 14 (BD) – Paspoint’s name comes from the acronym PAS, the Czech term for ASD (autism spectrum disorder). It has been partially funded by the City of Brno since 2019 and helps people on the autism spectrum to live “the lives they want” First called APLA JM, it was created in 2002 on the initiative of parents and professionals working with people with ASD.
“Our main area of services is social services for people with autism, in every point of their lives, from zero to 100 years old,” explains Dostál. Indeed, autism is a lifelong neurodevelopmental condition. It affects the way the brain grows, meaning that the brain develops differently than in most people, resulting in a different way of reasoning and perceiving the world. Neurodevelopmental conditions are distinct from mental health conditions, even if they are often mistakenly considered as such. They impact many different neurological functions and are present from the first months of life, or even before birth according to some research. Autism is therefore a permanent characteristic, like a person’s hair colour or height, and autistic children become autistic adults. Adequate care, on the other hand, allows the person to grow in the best conditions to cope. They can live happy and healthy lives, even if they retain their peculiarities and remain autistic, as their brain is “wired” in a different way. This is why autism is not considered to be a disease, but rather a disability, or simply a condition.
“Compared with the situation 20 years ago, it really is much better.”
“We provide several services for people with all types of autism spectrum disorders and also for other connected problems,” says Dostál. “We provide services for small children, for students and for adults with autism and also for the families and for everybody who is affected by autism. And we provide these services outside, in their own surroundings, environment, in the spaces where they live, we go to them.”
In the early 2000’s, when the organisation started, there was almost no support available in the Czech Republic for people with autism. “For sure, in comparison with the situation 20 years ago… it is really much better,” laughs Dostál. “There were not so many organisations who worked with people with autism. There are now more and more organisations, so now we can cover more and help more people. For example we are taking care of 400 families, but we still have a lot who are waiting for the services because we have no free staff to help them. But there are many other organisations which are learning how to work with people with autism, so we can ask them to help. So it is getting better, we can now say that we are full, but that we can tell another organisation to help, or we can tell the client to contact them to ask for help.”
“We are trying to help solve all problems.”
“So we are going to the families. First we observe, trying to find the problems, and then we ask them what their specific needs are, and then we try to find the solution to this, such as special needs with everyday life things like eating or changing clothes.”
Indeed, challenges that people encounter with executive functions and sensory processing can make simple daily life tasks much harder. Executive functions are a set of cognitive processes which are necessary for almost everything. They include planning, time management or attentional control and might be more or less impacted by autism, depending on each person. Sensory processing refers to the way the brain processes the information coming from the five senses and therefore affects their perceptions, often leading to pervasive hypersensitivity in people with autism. Fortunately, with the right tips and tricks, everyday life can become manageable. In the family context, it is also particularly necessary for other family members to be able to understand the way the people with autism perceive the world in order to be able to understand and empathise with them.
Everything is not over: “With the right intervention people with autism can live very nice lives!”
“We are trying to teach the families how to communicate with their sons or daughters. We are also providing psychological intervention or help for the families, to cope with the situation, to calm down. We explain to them what it means to have an autism diagnosis.” Both the “acceptance and the understanding of the diagnosis” can be difficult for the loved ones. “Maybe they can panic or feel depressed because they feel like everything is over. We are trying to tell them that it is not the truth, that we can help them. That if we help them, and if everybody gives the right interventions, people with autism can live very nice lives.”
The right support should ideally start as early as possible. “Services for small children are early care, from zero to seven years old. (…) The sooner you start the better it is. The work and the result of the intervention is much better if you start at an early age,” says Dostál. “We are working with children to teach them how to ask for help, how to communicate. We do some psychomotor training and some physical activities to relax. We also have many games in our special rooms which are educational games in which you learn. Sometimes it is a combination of mental and physical games: we play them to connect and then to communicate.”
Paspoint also organizes leisure activities such as weekend trips and summer camps for children and teenagers on the autism spectrum. Photo Credit: Paspoint
To accompany children with autism and help them face the challenges of childhood despite their difficulties, the perfect method has not yet been invented. There are many with their advantages and disadvantages, their supporters and their detractors. Some, notably the ABA, are even the subject of controversy. Therefore, at Paspoint, they “work with a combination of methods. We are trying to learn from everything and trying to mix it to give the best service. The most important thing for us is individualisation. We do everything individually, for the individual special needs of each of our clients. I think this is really it.”
On the other hand, Dostál warns about alternative methods of care. “We are using evidence based methods, which means professional methods. We never use methods which are not scientifically confirmed.” Unfortunately, many charlatans or self-proclaimed gurus offer desperate or misguided parents various methods, such as ice water therapies, strict diets or even disinfection cures. These methods, whose effectiveness has never been proven by a serious scientific protocol, can be abusive or even dangerous.
“We go to the schools and try to help them work better with students with autism”
“Then we have special social services, which are provided for children from seven to eighteen years old.” An important part of life for children in this age group is school. “We are, first of all, an organisation which has certification for social services and we have no competence to change the education system. We are only trying to help the situation. We are collaborating, cooperating with schools or universities and trying to help them to better integrate their students into the education system. When the family gives us permission, we go to the schools and try to help the school to better work with students with autism.”
Long ago, it was thought that all deaf people also had poor intellectual capacities. Even if in very rare cases the same disease can be the cause of both deafness and real intellectual disability, it is now long-accepted that the two problems have nothing to do with each other, and that low intellectual potential among the deaf was only an illusion. It was indeed only necessary to adapt to their specificity and find alternative ways to communicate. Sign language now allows deaf children in particular to have access to education. Could it be the same situation with autism? The answer is more complex than in the case of deafness, especially because each person on the autism spectrum faces unique challenges, depending on the importance of each of their autistic traits, but especially on the comorbidities, notably neurological, which are present in many cases. However, in more and more cases, the answer turns out to be yes: by adapting to their needs and their way of functioning, we discover in young people with autism a potential that was previously considered non-existent. We are not talking here about the few famous autistic geniuses and their amazing talents, but about normal children with autism who we discover to be capable of much more than we thought, if only the right conditions are offered to them.
Access to education is an human right
In the Czech Republic, as an activist and the spokeswoman from the Public Defender of Rights Office explained in our previous articles, access for autistic children to mainstream education remains problematic. Even if the UN Convention on the Rights of Persons with Disabilities (CRPD) declares in particular that people with disabilities have the right to participation in society, education, equal treatment and opportunities, the Czech Republic is not the only bad student in terms of rights of children with disabilities. France, for example, has been condemned twice by the Council of Europe for not having access to school for children on the autism spectrum. Indeed, by not providing enough education for autistic people, the country is violating European law. In some other European countries, however, the rate of schooling for autistic children approaches 100%.
In Italy in particular, the segregation of people with a neurological disability or a mental illness has been strongly fought against since the 1970s, when the country took the decision to prohibit the confinement of these people. In the Scandinavian countries also, a lot of importance is given to inclusive education. According to Josef Schovanec, an activist for the rights of autistic people in France of Czech origin, “When the school is adapted to autistic children, it is in fact to all the children that it adapts.”
It is now well described that people with autism learn better through visuals. Paspoint’s team also uses a lot of educational games. Photo credit: Paspoint
“Inclusion is very good, it is great if it is very well prepared. And the problem is that sometimes, in our country, it is not prepared.”
“We have, in our care, many children who are included into the normal school. It is getting better,” enthuses Dostál. “There are a lot of children who are in special classes or special schools, but we have no competence to tell the school to change this. Probably the school needs more staff and the space should also be more structured. But in many schools, it is actually getting better and better, they have well educated staff.” But should we now transfer the majority of students with autism who go to school in special classes to mainstream programs? “It is for a longer discussion, some of my colleagues are specialists in this, so they could tell you more. I think this is about conditions, the conditions in the school. I really don’t want to judge the system now. Inclusion is very good, it is great if it is very well prepared. And the problem is that sometimes, in our country, it is not prepared.” This is indeed what happened in the early 2010s. The Czech Republic made a major effort of inclusion by transferring many children with disabilities to the main programs, before backtracking on realizing that the schools were not ready for such a rapid change of such magnitude. Improvements, admittedly slower but more solid and prepared, are now underway in the Czech school system
“We still have to inform, again and again, all these people.”
But schools aren’t Paspoint’s only battleground. “We are also an educational centre providing education for students, for families, for teachers, social workers, doctors. It is much better than ten years ago, but we still have to inform, again and again, all these people. For example doctors often don’t know how to communicate with patients with autism and patients with autism, sometimes, can’t for example say what is the problem, so we are trying to find a way to connect the patient and the doctor with special methods of communication. We are not educating them how to cure, but how to communicate,” explains Dostál. In the Czech Republic, it is necessary to take specialised extra training about autism; it is not included in the normal medical and psychological education that professionals receive.
Another area of care which remains very problematic is the case of adults with autism who encounter the highest level of challenges and require special accommodation and constant care. The severity of these cases does not come from autism only but from the accumulation of comorbidities, which can lead to serious disability. These comorbidities can be other neurologic conditions such as epilepsy, intellectual deficiency or cerebral palsy, but also sometimes mental health or behavioural problems. Often, they have also spent many years without appropriate care, which has led their overall condition to worsen. In these situations, it happens that people cannot live independently and need substantial support. Unfortunately, the current situation in the Czech Republic is that there is almost nothing for them. They are therefore left with their families, who struggle to cope and to offer them appropriate life conditions. Often, they spend years in a psychiatric hospital, which is not an appropriate solution either but the only one available. Sometimes they even tragically end up living in the street without any access to support. Paspoint is therefore trying to raise funds to provide accommodation for these adults, with professionals who would be present to provide the necessary support in their living space.
The main problem in the Czech Republic remains access to an accurate autism diagnosis
However, according to Dostál, the main problem in the Czech Republic remains access to an accurate diagnosis. As we have seen in a previous article, hospitals lack capacity and professionals capable of carrying out diagnoses, which results in very long waiting lists. “The main problem in our country is diagnostics: there are not many professionals who can provide a diagnosis. Those who can do it, they are absolutely full to capacity. As a result, there are a lot of children who probably have autism, but who are waiting a long time for a diagnosis.” We are talking here about small children, but are there also many teenagers or adults who are not diagnosed? “Yes, it is probably the case and these days more and more older people, like teenagers or adults, are contacting us after receiving a new diagnosis.” And why do they get this diagnosis so late? “Probably because there was not enough information about it. Maybe they had a problem with communication or social skills, but there was no information about autism. Sometimes they were in medical care for a long time, but they had a wrong diagnosis and they finally found a better professional who said that their problem is maybe different. Also doctors now have some very simple ten points, ten very simple questions, and if you answer these questions in a certain way, this small test tells you that you might have some autistic traits and that you should undergo an assessment,” explains Dostál. “Maybe they were very alone with their problems and didn’t know who to contact… now they can find us!”
Blue is the colour of autism awareness. Photo Credit: C. Béguet / Brno Daily