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Abstract(s)
A Perturbação do Espectro do Autismo (PEA) é uma perturbação do neurodesenvolvimento caracterizada pela diversidade da manifestação dos sintomas em diferentes pessoas, nomeadamente nas mulheres. Embora haja uma crescente consciencialização sobre a perturbação, as experiências das mulheres com PEA ainda carecem de investigação aprofundada, especialmente a nível nacional. Este estudo qualitativo do tipo exploratório descritivo teve como objetivo abordar as trajetórias de vida, necessidades, funcionalidade, desafios e suportes/apoios de 13 mulheres portuguesas com PEA, com uma média de idades de 28,38 anos (DP=4,27). Utilizou-se a entrevista semiestruturada como instrumento de recolha de dados, de modo a permitir uma maior compreensão das experiências e perspetivas das participantes. Os resultados revelam a tendência para o diagnóstico tardio, frequentemente devido à subtileza dos sintomas e à capacidade de camuflar características. As participantes enfrentaram desafios nas diferentes fases do desenvolvimento, embora salientem também alguns aspetos facilitadores. Destacam-se as dificuldades na comunicação com pares a contrastar com a facilidade de relacionamento com adultos na infância, os desafios das mudanças físicas e falta de apoio na adolescência, divergindo do apoio familiar percebido na transição para a vida adulta. Ademais, as participantes deram sugestões para uma sociedade mais inclusiva, passando por mais apoio técnico, adaptações no emprego e investimento em conhecimento sobre a PEA. Assim, é importante aumentar a sensibilização para o tema em Portugal, começando pelos técnicos de saúde, educação e apoio social, a fim de melhorar a qualidade de vida destas mulheres, assim como potencializar oportunidades de acesso e sucesso, para que vivam numa sociedade mais inclusiva.
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by the diversity of symptom manifestations in different individuals, particularly in women. Despite increasing awareness of the disorder, the experiences of women with ASD still lack in-depth investigation, especially at the national level. This exploratory-descriptive qualitative (EDQ) research aimed to investigate the life trajectories, needs, functionality, challenges, and supports of 13 Portuguese women with ASD, with an average age of 28,38 years (SD=4,27). Semi-structured interviews are used as a data collection instrument to better understand the participants' experiences and perspectives. The results reveal a tendency towards late diagnosis, often due to the subtlety of symptoms and the ability to camouflage characteristics. Participants faced challenges in different phases of development, although they also highlighted some facilitating aspects. Difficulties in communication with peers stand out, contrasting with the ease of relating to adults in childhood, challenges of physical changes, and lack of support in adolescence, diverging from the family support perceived in transitioning to adulthood. Additionally, participants provided suggestions for a more inclusive society, including more technical support, job adaptations, and investment in knowledge about ASD. Hence, raising awareness of this issue in Portugal is crucial, beginning with healthcare, education, and social support professionals. This would not only enhance the quality of life for these women but also broaden opportunities for their access and success, fostering a more inclusive society for all.
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by the diversity of symptom manifestations in different individuals, particularly in women. Despite increasing awareness of the disorder, the experiences of women with ASD still lack in-depth investigation, especially at the national level. This exploratory-descriptive qualitative (EDQ) research aimed to investigate the life trajectories, needs, functionality, challenges, and supports of 13 Portuguese women with ASD, with an average age of 28,38 years (SD=4,27). Semi-structured interviews are used as a data collection instrument to better understand the participants' experiences and perspectives. The results reveal a tendency towards late diagnosis, often due to the subtlety of symptoms and the ability to camouflage characteristics. Participants faced challenges in different phases of development, although they also highlighted some facilitating aspects. Difficulties in communication with peers stand out, contrasting with the ease of relating to adults in childhood, challenges of physical changes, and lack of support in adolescence, diverging from the family support perceived in transitioning to adulthood. Additionally, participants provided suggestions for a more inclusive society, including more technical support, job adaptations, and investment in knowledge about ASD. Hence, raising awareness of this issue in Portugal is crucial, beginning with healthcare, education, and social support professionals. This would not only enhance the quality of life for these women but also broaden opportunities for their access and success, fostering a more inclusive society for all.
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Keywords
Perturbação do Espectro do Autismo Mulheres Diagnóstico Experiências Desafios Apoios Autism Spectrum Disorder Women Diagnosis Experiences Challenges Supports