Rede de apoio social às famílias de crianças com autismo em Macapá

Abstract

Autistic Spectrum Disorder is considered a neurodevelopmental disorder characterized by qualitative and quantitative changes in communication, social interaction, isolation, lack of interest in others, and presents itself in different degrees of severity. The current context of autism and its complexity requires advances in the model of care and care provided to families, as with the onset of symptoms, they experience a series of experiences, which cause changes in the routine, affecting the psychological, finances and quality of care life. The research had as a general objective: to analyze the support networks for the families of children with Autism Spectrum Disorder at a special education school in Macapá. And as specific objectives: to understand the impacts generated by the diagnosis of Autism Spectrum Disorder on the family; describe how families of children with Autism Spectrum Disorder use social support networks and the benefits guaranteed by laws; to map the institutions belonging to the support networks for children with Autistic Spectrum Disorder in Macapá. Methodologically, the research is descriptive with a qualitative approach. The study site was the Educational Center Raimundo Nonato Dias Rodrigues located in the city of Macapá. The sample comprised family members of children aged 4 to 12 years of age, with a defined diagnosis for ASD who were regularly attended at the institution during 2017 and 2018. From a population of 189 students in 2017 and 120 students in 2018, the final sample comprised 19 families (6.14%). The interviews were recorded after approval by the Research Ethics Committee under opinion No. 2,900,834 and the signing of a Free and Informed Consent Form. The results were discussed using content analysis from Bardin's perspective. The interviews were transcribed and organized according to coding and thematic categories were defined for reflective and critical analysis: Interfaces between Families, autism and support networks: from suffering to love; Institutional Support and the legal rights of children with autism - A portrait of what is advocated vs. reality. The support networks offered by the family nucleus and professionals were the most evident in the speeches. It should be noted that the family is the social group that plays a determining role in the development of the child at the affective, cognitive and psychological level and must ally with professionals trained to stimulate the compromised functions in an appropriate manner.Regarding institutional support, the most sought after were: the Raimundo Nonato Dias Rodrigues Educational Center, Centro de Atenção Psicossocial Infanto-Juvenil, Centro de Reabilitação do Amapá and the Sara Kubistcheck chain. However, family members pointed out that only Raimundo Nonato Dias Rodrigues Educational Center offers long-term follow-up for children with ASD and highlighted the numerous difficulties in accessing services both through the Unified Health System and private plans.