3 research outputs found
Autism community perspectives on autism research
Dada a sua elevada prevalência global (cerca de 1 em 100), gravidade
e complexidade etiológica, o autismo é hoje uma importante área de investigação.
O presente trabalho teve como objetivo compreender quais
as preocupações éticas, perspetivas e expetativas de pais e profissionais
da saúde e educadores ligados ao autismo, no que diz respeito à
investigação desta patologia. O trabalho foi desenvolvido no âmbito de
uma rede de investigação europeia sobre sinais precoces de autismo.
Em paralelo em vários países da Europa, foram identificados os tópicos
de maior interesse para pais e profissionais através de grupos de foco,
na sequência dos quais se elaborou um inquérito online que foi distribuído
por esta comunidade ligada ao autismo. Em Portugal, os inquiridos
(n=331) mostraram um interesse global pela investigação em autismo,
nomeadamente sobre as bases genéticas e sobre sinais precoces de
autismo. Relativamente aos benefícios resultantes da participação em
projetos de investigação, os pais privilegiaram o acesso a intervenção
e a formação pessoal, enquanto que os profissionais deram mais importância
ao acesso a mais conhecimento e a equipas especializadas. Os
três grupos deram ênfase ao acesso à informação completa obtida durante
a investigação e às conclusões gerais do estudo. Os resultados
obtidos reforçam a importância da investigação do autismo, indicando
também linhas claras de atuação que têm em observação as perspetivas
da comunidade ligada ao autismo.Given its high global prevalence, clinical severity and etiological complexity,
autism has become an impor tant research area. This work
was developed within a European research network on early signs of
autism, and aimed to understand the specific ethical concerns of parents
and practitioners in health and education, with regard to research
in autism, and understand their perspectives and expectations. Using
focus groups, the topics of greatest interest for this community were
identified and an online sur vey was developed and distributed to the
community. Respondents in Por tugal (n = 331) showed a global interest
in autism research, with special focus on autism genetics and early
signs of autism. Concerning the par ticipation in research projects and
its direct benefits, parents privileged access to inter vention and training,
while professionals wanted access to more knowledge and specialized
teams. The three groups favored access to the full information
obtained from research and the general conclusions of the studies.
Thus, the results reinforce the interest of parents and professionals in
autism research and provide clear lines of conduct taking into account
this community's perspectives and expectations
Autistic adult health and professional perceptions of it:evidence from the ASDEU project
Abstract
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services
Real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with services guidelines:results from the ASDEU study
Abstract
Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals