Leisure for people with autism, another obstacle in their adaptation

David He was three and a half years old when he was diagnosed with Autism Spectrum Disorder (ASD), but before that it took a few months to find out what was happening to him. The second son of Cecilia and Ignasi had from one day to the next a involution in speech and became unable to pronounce the only word he knew so far: dad. It was then that the odyssey of his parents began, who went from doctor to doctor looking for what was happening to the child and whose cause seemed to be found in any other part of the body: “They told us that it could be that the child was deaf, that he had a problem in the vocal cords, that they were vegetations”, indicates Cecilia. “Any possibility was ahead”, Add.

After knowing the diagnosis, one of the obstacles they encountered and that had never been raised was in leisure. Parents of another child neurotypicalthat is, without ASD, they realized that with David they could not do most of the activities that their other son was used to, since neither spaces nor society they are prepared to respond to his needs. Autism Spectrum Disorder greatly affects different depending on the person who has it and the degree of autism they present, but they all share difficulties in the processes of socialization, communication and understanding, and the ability to make thought and behavior more flexible. His sensitivity is also very different from that of other people, either for more or for less. So activities that could be as daily as accessing a shopping center, for example, can become a whole world for them.

Leisure options are few

The options available to them are scarce, especially in the case of activities carried out in closed spaces. For this reason and to respond to this need of parents, the association ‘Caring for the Tribe’ of the union of Autism for Good and Dog Point, dedicated to the care of families of people within the spectrum. Every month they organize activities thanks to businesses in the Community of Madrid that adapt their spaces to the needs of children and families. And although there are not many spaces that lend themselves to collaboration due to financing problems, more and more projects are joining this initiative and creating a place where children and their families can enjoy safe and quiet.

Among the outstanding activities are the theater shows in the Plot Point room, where they adapt their works to meet the needs of this select audience. The process is really simple and they consider that it could be applied to a large number of shows, since a very elaborate preparation is not necessary. Sheilathe organizer of all the events, explains that the only differences are: the control of the lights to be progressive, sound regulation so they don’t get scared and use pictograms to make it easier to follow the performance. An element that is also placed throughout the space, so that children know what they should do at all times.

The process of adapting the works consists of regulating the lighting, controlling the volume and using pictograms

In addition, a room is enabled to place a sensory refuge, a space where children can go if they feel uneasy and which consists of a tent located in a dark environment and inside which they can find toys and small lights that provide them with security. And, finally, throughout the performance the children are allowed to move around the room, dance, laugh and express all the emotions they feel at that moment, something that is far from conventional theaters in which the general dynamic is that of remain seated and silent.

Beatriz, mother of a child with autism: “Here we all know each other and we know that this is our life”

Another of the proposals that they enjoy the most are the trampolines at the 7Fun center in Alcalá de Henares, where they can spend energy freely with the absolute peace of mind of their parents. Since there, as explained Beatrice, the mother of one of the little ones, they feel understood, since they know each other and they know that no one is going to judge their children: “We all know each other and we know that this is our life,” she says.

The problems of ignorance

But families living with autism face other obstacles due to social ignorance about ASD. When they receive the diagnosis, an infinite number of questions arise that are often difficult to answer, all accompanied by a lack of help by public institutions. “The problem when you have an autistic child is that people think you are born knowing,” says Cecilia. And she explains that on many occasions it consists of resorting to “trial and error” until finding the solution. In addition, throughout this process a question arises that accompanies them for years: “Will my son be independent in the future? A question for which not even the professionals themselves have an answer, since evolution or involution depend on each case. Although it is known that psychoeducational work and proper attention at school can improve the abilities of children with ASD.

Maria Valverde, psychologist: “It is important to attend to the emotional state of the whole family”

Maria Valverde, a psychologist in the Research and Knowledge Transfer area of ​​Autism Spain, insists on the importance of attending to the emotional state of the whole family, especially when the disorder has just been diagnosed, when mourning and parental stress processes can occur due to the accommodations and lack of balance of the parents in a difficult situation to incorporate. She also recommends seeking help, support and alliances to go through the adaptation process, although she remembers that finally “it is something that occurs naturally like in any other family when a change occurs.”

The subsequent behaviors of society in the face of autism will also end up affecting families. It is very common that when a child enters a “loop”, as they themselves indicate, in some public space, people label them as “bad parents” and accuse them of spoiling the child, when the reality is that at that time The only thing they can do to calm him down is to leave him alone. For this reason, and to promote greater integration of people with ASD, it is important to bet on educating about the disorder and publicizing this situation that affects plus of 470,000 people only in Spain.


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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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