April 2, 2022

11:04

Priscilla Peixoto – Cenarium Magazine

MANAUS – According to the United Nations World Organization (UN), it is estimated that there are 70 million people with autism in the world. And this Saturday, April 2, is celebrated the day of global awareness of this issue, in order to promote knowledge and break the prejudice of society about neurodevelopmental disorder.

In addition, the date aims to draw the attention of governments to the formulation of public policies to ensure the dignity, accessibility and inclusion of this portion of the population that, although it has laws to protect rights, most do not enjoy what was guaranteed by Law No. 12,764 (2012), which establishes the National Policy for Protection of the Rights of the Person with Autism Spectrum Disorder (ASD)

The law also known as “Berenice Piana” ensures that the person with ASD has access to health services, education, vocational education, housing, labor market, and social assistance. Despite ten years of existence, in the reading of the lawyer Ricardo Gomes, for those who live with the cause on a daily basis know that in the capital of Amazonas the practice that guarantees the rights of autistic people is not applied.

“Almost a decade ago, we should be celebrating the implementation, at state and municipal levels, in Amazonas, of inclusive public policies for people with Autism Spectrum Disorder (ASD). However, even with the State Law 12.764/2012 and the Municipal Law 1.495/2010, from the Amazonas capital, the present date, in practice, for those who live together know, without great intellectual effort, how easy it is to see that, in this period, no governor fulfilled the article 2 of the aforementioned legislations”, assesses Ricardo Gomes, who is also the father of a child with autism.

Even though he is able to provide his daughter, who is only 9 years old, with all the treatment, monitoring, and stimulation necessary to ensure the child’s well-being, Ricardo says that the concern for other families who also have people with autism is a constant in his daily life and has become one of his main fights.

“I can guarantee that my daughter has the best assistance, but what about those who need access to the various services and can’t? The only service center for children with autism here is the Amigo Ruy, located in the Alvorada neighborhood, and it has a maximum capacity for 500 children/month, that is, it is estimated that in our city there is an average of 20 thousand autistic people, so, per month, there are 19,500 people who may need some kind of service and are left out,” says Ricardo.

According to the lawyer, by the established laws, and in accordance with the provisions of articles 244, X and 248 of the State Constitution, the State of Amazonas is obliged to:

I – create and keep specific units for integrated health and education services, specialized in treating disabled people, among them the autism carriers;
II – make early diagnosis, that is, between 14 and 36 months of age, for intervention in the adaptation and education of the autism carrier, as well as systematize training for doctors, in order to make this diagnosis as fast and efficient as possible;

III – make available all specialized treatment in the following areas:

(a) communication (speech therapy)
b) Learning (specialized pedagogy, with therapeutic assistant/assistant, if necessary)
c) Behavioral psychotherapy (psychology)
d) Psychopharmacology (child psychiatry)
e) Motor training (physiotherapy)
f) Constant physical diagnosis (neurology);
g) Applied behavioral methods (ABA, TEACCH, SONRISE and others);
h) Adapted physical education; and
i) Music therapy.

“This should have been a reality a long time ago. Brazil has had a federal law for a decade that no one complies with. The Legislative Assembly, fiscal of the state executive power, enacted a law that is also not complied with,” says the lawyer.

Change

In Ricardo Gomes’ reading, for an effective change and compliance with the existing laws, the first step is to have specific funds to comply with the norm. “Without revenue there is no expenditure, you separate the law from the budget, made in the previous year. Autism is a condition that needs treatment, and the health budget also includes us. We need management, management and direction for this to happen”, he points out.

Besides the effective application of the law, the lawyer also suggests a survey to have a database informing how many autistic people there are in the state. The lawyer also suggests seeking with the federal government resources for the construction of, at least, ten Special Rehabilitation Centers (CER), already existing in several states.

“We don’t have a database, the number of 20 thousand autistic people in the city of Manaus, for example, is unofficial, but we believe it is more than 40 thousand people. However, if we don’t know who they are, where they are, and what level of autism they have, we will not be able to make a plural public policy without at least knowing what they need”, he highlights.

Reflection, empathy, and inclusion

For lawyer Bernardo Monteiro Aufiero, also the father of a child with autism, besides the public policy issues directed to health, (one of Ricardo Gomes’ main concerns), education also deserves to be highlighted in the scope of inclusion. Bernardo points out that guaranteeing access to education and a healthy school life is another difficult point for most who are on the spectrum and compares:

“I am aware that I can guarantee an inclusive and welcoming education for my son. To pay for all this is not easy, but this is not the reality of the majority of the Brazilian population, and much less in Manaus. We need to promote the reflection that it is not just about solving our lives, but thinking about the collective and demanding that what is foreseen in the law becomes a reality. Investing in inclusive management is necessary. To reverberate this awareness and not close our eyes to it is the fight of many parents and families, because it is not only the children who need help, but the family as a whole needs it, with day care centers, mediators, and actions, so that this family can fully live within the society”, considers Bernardo.

Waiting for mediators

Active in the autism cause, the president of the Instituto Amigo Anjo, an organization focused on helping families of people with autism condition, also attends to the need of a more inclusive look for autistic people when the subject is education. According to Fabiana Braga, of the 144 families registered at the institute (mostly of people with autism), the complaint and dissatisfaction that plagues most is the lack of a structure.

“Today, our chaos is in the educational sector. On the part of the City Hall, with primary education, the children are entitled to a school life companion, who is the mediator. And until this time of the school year we have no news about it. We are all waiting for the mediator to be hired, and we hope to make it happen in April. We, parents, really have this difficulty with the inclusion policy, besides the prejudice we experience in society,” says Fabiana.

Care and encouragement

Clinical psychologist Célia Braga has been working for almost ten years with patients with neurodevelopmental disorders. The professional says that, the sooner treatments are started according to the specificity of each one, the better the chances of ensuring quality of life and development, especially in terms of socialization.

“The difficulty of interaction in children with autism is the basis of the diagnosis. I did a group therapy immersion, based on lego, and a factor that drew attention was the difficulty of this socialization. So, without the proper stimulation, there is no child with autism who will have an adequate social performance”, explains the professional.

Celia points out that the lack of social skills, which results in the person not interacting, in fact needs a multidisciplinary follow-up. And assistance to parents is also necessary so that they can broaden their understanding and better manage the situation.

“Unfortunately, there is still a significant part of the population that doesn’t have access to proper follow-up. And the later the diagnosis is made, the more the child will suffer. We hope that this awareness day will serve so that, mainly, the government leaders look at this issue with more affection and enforce the rights of this part of the population that is pure, full of love, and deserves respect”, concludes the psychologist.

About Autism

Autism Spectrum Disorders” (ASD) is considered a syndrome, i.e., a permanent condition. To enable a better development, there are treatments that stimulate social skills that promote the achievement of autonomy.

It is worth remembering that each case is unique and there are several different levels of autism, ranging from mild to severe. Among the most common symptoms are: repetitive movements, difficulty concentrating, phobias, relationship difficulties, aggressiveness, learning difficulties, and difficulty maintaining eye contact.