The two-time mother from the South Moravian region has not stopped for several years. He has two autistic sons at home. “I waited for a child for eleven years before two praying boys were born to me. You see it more with Péti, less with Pavlík,” features Světlana in a video created by the Children of the Full Moon association, which tries to help families with autism.
A battered face and a broken door on the program
The association made a heartbreaking video in 2018, when Světlana also had to take care of her husband in bed. Without her son Paul, she would have collapsed, she says. Although he also has Autism Spectrum Disorder (ASD), he is better off than Peter, who tends to be aggressive.
“He hits me and my face. We broke doors and walls. The door will last, but the hinges won’t. The husband made a plank of a door where he could beat it – but he found other places.” describes a desperate mother.
While Světlana’s second son is able to communicate, go to work and even occasionally hunt with his father’s friends in the woods, Petr only manages to perceive the world around him and play games. video. It then reacts radically to any change.
It would help her unhappy mother if she could take Petra to a day hospital or a special school for a while. “We approached three. But they told me everywhere that Péťa couldn’t just deviate. We’ve been dealing with this since kindergarten, like we’re a dusty family,” recount.
Špidla also mentions a chronic lack of services
Svetlana is not the only one who does not stop at home because of autism and does not even have a moment’s rest. Families all over the Czech Republic are deciding that they have nowhere to put their branch or an adult. “There is a chronic lack of social services for people with ASD. Regions are responsible for this, and they don’t even know how many autistic people they have in their region.” says Jan Žáček of Children of the Full Moon.
His words are also confirmed by an investigation by mediator Anna Šabatová from 2018. He, among other things, revealed that No less than 76 percent of respondents reject the 70 households surveyed with a special diet. Elderly patients with PAS (over 26 years old) even reject it in 94% of cases. There are no capacities, suitable premises, but also qualified experts.
Schools for similar people have completely different specifics. It is not possible to put more than 10 children in a class, and each of them needs individual support. Despite the fact that they generally find it difficult to integrate into society.
Former Minister of Labor and Social Affairs Vladimír Špidla, who has an autistic grandson David, also talks about the lack of social services. “The services needed are few. It was before and now it was more visible because of the coronavirus, but not by much. On the contrary, it was more visible that even the inexpensive system helped. But it is clear that she needs an extraordinary reinforcement.” said in an interview with Blesk Zprávy the ex-prime minister, who takes care of his grandson every Thursday, significantly helping the family to rest for a while.
Apart from problems such as the lack of jobs and experts, the fact that there is no exact number of people with autism that we actually have in the Czech Republic. The municipalities that are responsible for providing services have nothing to bounce back from.
Autism in numbers: it mainly affects men
But a new autism map has stopped that, at least in part. This was created by the association Les Enfants de la Pleine Lune after several months of effort. It revealed that 8,677 people with PAS have been confirmed across the Czech Republic, although it is estimated that there could be up to 200,000 people with the disorder on a small scale.
Most autistic people in our country are between the ages of 6 and 10, according to map 3455. Even someone over 85 has PAS. Most people with autism are then men. Of the total number, 7,000 people. Most of them come from the South Moravian region, where Světlana comes from.
“They should quickly translate into an increase in the capacity of services, such as day and week hospitalization services, personal assistance or residential services. But we also know that it is not enough to look at the statistics. It is essential that regions look first and foremost at the individual needs of people with ASD and tailor the support needed accordingly,” adds Veronika Žáčková from the association.
The association managed to obtain the numbers from the medical assessment service of the Czech social security administration. “In fact, we’ve had it in place for months and are looking for a way to get the data. We’ve negotiated with the authorities, and we even had to apply the law on free access to information.” adds a story on the way to creating the Žáček map.