No one needs to read that families are complex, after all we have ours to remind ourselves of daily. They are uncles who think that day-to-day obligations must be fulfilled by one or another person in the family. Everyone has an opinion to give or something to judge and those who are there to help are few indeed.
Schools provide countless examples that are also no different. We did a qualitative research on parents’ perception of the care network for children with autism and the results were interesting.
In this survey, parents of children with autism reported that schools, in general, are centers of goodwill. People would like to help, but do not know how and end up being deposits of children accompanied by monitors and untrained teachers. Special literacy programs for children with autism are still not widespread, which makes this process drag on, compromising children’s school learning, even when they are not as severe cases on the autism spectrum.
Parents describe the lack of information between the treatment agents as one of the main disorders for the effectiveness of the treatment. There is an ideal created by the parents’ collective that a child with autism should be accompanied by a speech therapist, psychologist and occupational therapist in the first years of treatment. And when they manage to ensure treatment with these professionals, they understand that their problem consists of a busy schedule, a long travel time and little integration between professionals. A place where all treatments take place concurrently and in a coordinated way seems to be very well regarded by parents.
One of the results that surprised us most was that regardless of the parents’ support network or socioeconomic level, all groups pointed out that groups of parents on WhatsApp were a very efficient way of finding shelter and information. They are parents with the same problems and different levels of solutions, who exchange experiences with the empathy of those who have been through the same problem. In this way, it is easy to understand why everyone likes it, but it is also easy to see that in these groups there is a multiplication of treatments that are not based on science and that they find easy victims.
We use the internet for so many things and it is clear that our health will also, every day, be more digital. Our support groups will be made not only for social support, but built on the principle of empathy and, preferably, with rigor regarding the quality of information. May we health and education professionals learn, while we still have a role, how to position ourselves clearly and always for the benefit of our patients in the short and long term.
