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Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study
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 exp...
| Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Springer US
2021
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| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8510906/ https://www.ncbi.nlm.nih.gov/pubmed/33502713 http://dx.doi.org/10.1007/s10803-021-04873-5 |
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| author | Scattoni, Maria Luisa Micai, Martina Ciaramella, Antonio Salvitti, Tommaso Fulceri, Francesca Fatta, Laura Maria Poustka, Luise Diehm, Robert Iskrov, Georgi Stefanov, Rumen Guillon, Quentin Rogé, Bernadette Staines, Anthony Sweeney, Mary Rose Boilson, Andrew Martin Leósdóttir, Thora Saemundsen, Evald Moilanen, Irma Ebeling, Hanna Yliherva, Anneli Gissler, Mika Parviainen, Tarja Tani, Pekka Kawa, Rafal Vicente, Astrid Rasga, Célia Budişteanu, Magdalena Dale, Ian Povey, Carol Flores, Noelia Jenaro, Cristina Monroy, Maria Luisa Primo, Patricia García Charman, Tony Cramer, Susanne Warberg, Christine Kloster Canal-Bedia, Ricardo Posada, Manuel Schendel, Diana |
| author_facet | Scattoni, Maria Luisa Micai, Martina Ciaramella, Antonio Salvitti, Tommaso Fulceri, Francesca Fatta, Laura Maria Poustka, Luise Diehm, Robert Iskrov, Georgi Stefanov, Rumen Guillon, Quentin Rogé, Bernadette Staines, Anthony Sweeney, Mary Rose Boilson, Andrew Martin Leósdóttir, Thora Saemundsen, Evald Moilanen, Irma Ebeling, Hanna Yliherva, Anneli Gissler, Mika Parviainen, Tarja Tani, Pekka Kawa, Rafal Vicente, Astrid Rasga, Célia Budişteanu, Magdalena Dale, Ian Povey, Carol Flores, Noelia Jenaro, Cristina Monroy, Maria Luisa Primo, Patricia García Charman, Tony Cramer, Susanne Warberg, Christine Kloster Canal-Bedia, Ricardo Posada, Manuel Schendel, Diana |
| author_sort | Scattoni, Maria Luisa |
| collection | PubMed |
| description | 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10803-021-04873-5. |
| format | Online Article Text |
| id | pubmed-8510906 |
| institution | National Center for Biotechnology Information |
| language | English |
| publishDate | 2021 |
| publisher | Springer US |
| record_format | MEDLINE/PubMed |
| spelling | pubmed-85109062021-10-19 Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study Scattoni, Maria Luisa Micai, Martina Ciaramella, Antonio Salvitti, Tommaso Fulceri, Francesca Fatta, Laura Maria Poustka, Luise Diehm, Robert Iskrov, Georgi Stefanov, Rumen Guillon, Quentin Rogé, Bernadette Staines, Anthony Sweeney, Mary Rose Boilson, Andrew Martin Leósdóttir, Thora Saemundsen, Evald Moilanen, Irma Ebeling, Hanna Yliherva, Anneli Gissler, Mika Parviainen, Tarja Tani, Pekka Kawa, Rafal Vicente, Astrid Rasga, Célia Budişteanu, Magdalena Dale, Ian Povey, Carol Flores, Noelia Jenaro, Cristina Monroy, Maria Luisa Primo, Patricia García Charman, Tony Cramer, Susanne Warberg, Christine Kloster Canal-Bedia, Ricardo Posada, Manuel Schendel, Diana J Autism Dev Disord Original Paper 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10803-021-04873-5. Springer US 2021-01-27 2021 /pmc/articles/PMC8510906/ /pubmed/33502713 http://dx.doi.org/10.1007/s10803-021-04873-5 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
| spellingShingle | Original Paper Scattoni, Maria Luisa Micai, Martina Ciaramella, Antonio Salvitti, Tommaso Fulceri, Francesca Fatta, Laura Maria Poustka, Luise Diehm, Robert Iskrov, Georgi Stefanov, Rumen Guillon, Quentin Rogé, Bernadette Staines, Anthony Sweeney, Mary Rose Boilson, Andrew Martin Leósdóttir, Thora Saemundsen, Evald Moilanen, Irma Ebeling, Hanna Yliherva, Anneli Gissler, Mika Parviainen, Tarja Tani, Pekka Kawa, Rafal Vicente, Astrid Rasga, Célia Budişteanu, Magdalena Dale, Ian Povey, Carol Flores, Noelia Jenaro, Cristina Monroy, Maria Luisa Primo, Patricia García Charman, Tony Cramer, Susanne Warberg, Christine Kloster Canal-Bedia, Ricardo Posada, Manuel Schendel, Diana Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study |
| title | Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study |
| title_full | Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study |
| title_fullStr | Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study |
| title_full_unstemmed | Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study |
| title_short | Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study |
| title_sort | real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with services guidelines: results from the asdeu study |
| topic | Original Paper |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8510906/ https://www.ncbi.nlm.nih.gov/pubmed/33502713 http://dx.doi.org/10.1007/s10803-021-04873-5 |
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