Adulthood Autism in Brazil: Diagnosis, Intervention, Autonomy and Employment.

Background: Adult TEA studies were first published in the late 1960s and are typically characterized in terms of adult independence, need for partial support (eg, living with the family, employment support) or need for extensive (residential) support. Early reports of results showed about two-thirds of people with ASD requiring full-time care and less than 10% achieving independence. Recent studies report that nearly 20% of people with ASD have achieved positive results for independence (eg university and employment), while the prevalence of people requiring full-time care has declined to 56%.Many of the improvements in adult outcomes over the last few decades can be attributed to the implementation of specific social, educational and behavioral practices, in addition to the Brazilian Law. Despite improvements in overall adult outcome, the prognosis is highly variable. Possible explanations for this include failures in adapting effective treatments to adult populations and the paucity of interventions focused on the transition to adulthood. This is particularly evident in the extremely low employment rate for people with ASD. Many adults with autism continue to live with their families and, as their parents grow older, become a major concern for the family. In Brazil we are faced with the limitation of professional qualification and the theoretical approach of the places of care. A recent study shows that in the 27 states of Brazil, 650 institutions were found to assist people with ASD, but the minority specifically targeted young people and adults (1.5%).

Objectives: To know the reality of the adult autistic with TEA in Brazil in relation to the autonomy, assistance and labor market.

Methods: In April 2015, a questionnaire was sent via the internet to the 4,000 (four thousand) families registered on the Autism&Reality website, with questions about: gender, education level, current occupation, age of the child when the parents observed the first signs of ASD, age of diagnosis, intervention, treatment line and medication use. We received 1,669 questionnaires answered by parents, guardians or by the adult with TEA and we selected all 558 with data from individuals over the age of 21.

Results: We verified that 63.6% of the questionnaires were answered by the parents and 5% were filled by the adult with ASD. About the profile of adults with ASD: 71.1% were males and 78.7% were unmarried. Only 0.9% lived alone, 0.2% lived in institutions and 79.9% lived with their parents.In relation to academic training, occupational life and employment: 9.9% of adults with ASD had graduation, 9.9% were attended in inclusion system, 14.9% registered in regular employment, 1.3% were registered in the Law of Quotas and 78% did not work. 64% used medication, 77.6% were involved in intervention and 18.1% in ABA intervention.

Conclusions: Although autism awareness and knowledge in Brazil have evolved a lot in the last decade, there is a shortage of institutions and projects for adults with autism, showing the need for public policies, information for families, specialized services, school, occupational and labor for greater autonomy and independence of these people.