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“Every day is a day for us to become aware of being different, something inherent to the human condition. Autism is just one of the differences ”, says professor Mônica Costa, mother of José Miguel, 5 years old, diagnosed with Autism Spectrum Disorder. to 1 year and a half. On this April 2, World Autism Awareness Day, mothers report how challenging social isolation has been for this social group, but claim that it is also possible to show progress in development.
Mônica, who is a PhD student in Integrated Education, says that the beginning was more difficult, since Miguel had a very busy routine, with therapeutic activities and school. “The person with autism is extremely attached to rituals, to routines. Then there was this break. This brought him suffering, he went into crisis during the day, he cried, he got disorganized. What I tried to do was keep the same schedules and go promoting all day the activities he used to do ”.
Sunset motorcycle rides were a must for 14-year-old Anna Clara. “She really likes to ride a motorcycle, so every day in the late afternoon, we would go for a walk. She chose the path. This motorcycle ride was very significant, because it was the moment when she really let go. “says Mom. Laura Marsolla, also a teacher. Clara was diagnosed at age 7 with a mild grade on the autism spectrum. “Since he’s verbal, he communicates very well and was giving us advice: I’m in the mood for this, I don’t want that.”
Karina Frizzi, a psychologist and behavior analyst for the leader of Grupo Cond, a specialized clinic, realizes that there are many efforts by parents in this follow-up. “Parents always worry about encouraging their children, so it ends up being a great burden, especially for families who do not have support.”
According to data from the US Center for Disease Control and Prevention, there is now one case of autism for every 59 children. Also according to the center, people with cognitive development disorders, regardless of age, have a higher risk of contagion with the new coronavirus. Also, if they are infected, they can have more acute forms of the disease.
Advances
Despite presenting more difficulties in social interaction, Mônica says that she perceives significant gains from Miguel in communication and in daily activities. “Since I’m at home, I was able to follow this defrosting process more closely, for example. They are gains that for some may be small, but for him they are very significant: more efficient communication and gains in daily life skills, such as eating alone, deploying and using the bathroom. “
With Anna Clara, the need to establish a routine with online classes contributed to advances in autonomy and responsibility. “We are excited to see how much problem-solving training was trained during this period,” says Laura. The mother remembers that she also perceives difficulties derived from the lack of interaction. “At school, he follows the class, the language of the staff, so he learns together with his peers. By staying at home, he no longer has that exchange.”
Diagnosis
Because it is not a disease, but a condition that is related to neuronal development, both Monica and Laura report difficulties in defining the diagnosis. “This search was not easy. I was very young and there is also this culture of doctors to invalidate, delegitimize the speech of mothers, which sometimes makes the diagnosis difficult. They manifest in the doctor’s office. “
Unawareness
“The child is spoiled”, “The mother gave no limit”, “The child throws a tantrum and falls to the ground”. These are some of the sentences and looks of condemnation that parents and caregivers must grapple with. Therefore, information is essential. Both mothers were emphatic in highlighting the need for greater knowledge about this condition in society.
“Autism will not determine how far it will go, or will stop reaching, it is the conditions, the possibilities that are given to this subject, the social and school opportunities and the therapeutic interventions that will make the difference”, says Mônica. adding the need for a better reception in health services. “There are specific actions, but a more effective policy is needed to guarantee their rights.”
“The ignorance about autism was something that lived in me”, recognizes Laura. She says she associated the condition with stereotypes, which are repetitive or ritualistic actions stemming from movement, posture, or speech. “When the diagnosis came out that she was autistic, that’s when we discovered that there are many differences between them. And that she is autistic, and that’s fine.”
Assistance
In the city of São Paulo, care for people with autism is provided by the Basic Health Units (UBS), the Specialized Rehabilitation Centers (CER) and the Psychosocial Care Centers (CAPS). “The work of the CAPS consists of the support service and support to the diagnosis process, the articulation of the health services, the support to the teams that work in a network, the direct follow-up of serious situations and co-responsibility in the care of emergencies. ”.
