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1. Determinants of satisfaction with the detection process of autism in Europe:results from the ASDEU study

Author

Guillon, Q. (Quentin), Baduel, S. (Sophie), Bejarano-Martín, Á. (Álvaro), Canal-Bedia, R. (Ricardo), Magán-Maganto, M. (María), Fernández-Álvarez, C. (Clara), Martín-Cilleros, M. V. (María Victoria), Sánchez-Gómez, M. C. (María Cruz), García-Primo, P. (Patricia), Rose-Sweeney, M. (Mary), Boilson, A. (Andrew), Linertová, R. (Renata), Roeyers, H. (Herbert), Van Der Paelt, S. (Sara), Schendel, D. (Diana), Kloster Warberg, C. (Christine), Cramer, S. (Susanne), Narzisi, A. (Antonio), Muratori, F. (Filippo), Scattoni, M. L. (María Luisa), Moilanen, I. (Irma), Yliherva, A. (Anneli), Saemundsen, E. (Evald), Jonsdottir, S. L. (Sigridur Loa), Efrim-Budisteanu, M. (Magdalena), Arghir, A. (Aurora), Papuc, S. M. (Sorina Mihaela), Vicente, A. (Astrid), Rasga, C. (Celia), Xenia Kafka, J. (Johanna), Poustka, L. (Luise), Kothgassner, O. D. (Oswald D), Kawa, R. (Rafal), Pisula, E. (Ewa), Sellers, T. (Tracey), Posada De La Paz, M. (Manuel), Rogé, B. (Bernadette), Guillon, Q. (Quentin), Baduel, S. (Sophie), Bejarano-Martín, Á. (Álvaro), Canal-Bedia, R. (Ricardo), Magán-Maganto, M. (María), Fernández-Álvarez, C. (Clara), Martín-Cilleros, M. V. (María Victoria), Sánchez-Gómez, M. C. (María Cruz), García-Primo, P. (Patricia), Rose-Sweeney, M. (Mary), Boilson, A. (Andrew), Linertová, R. (Renata), Roeyers, H. (Herbert), Van Der Paelt, S. (Sara), Schendel, D. (Diana), Kloster Warberg, C. (Christine), Cramer, S. (Susanne), Narzisi, A. (Antonio), Muratori, F. (Filippo), Scattoni, M. L. (María Luisa), Moilanen, I. (Irma), Yliherva, A. (Anneli), Saemundsen, E. (Evald), Jonsdottir, S. L. (Sigridur Loa), Efrim-Budisteanu, M. (Magdalena), Arghir, A. (Aurora), Papuc, S. M. (Sorina Mihaela), Vicente, A. (Astrid), Rasga, C. (Celia), Xenia Kafka, J. (Johanna), Poustka, L. (Luise), Kothgassner, O. D. (Oswald D), Kawa, R. (Rafal), Pisula, E. (Ewa), Sellers, T. (Tracey), Posada De La Paz, M. (Manuel), and Rogé, B. (Bernadette)

Abstract

Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect.

Published
2022

2. Intervention services for autistic adults:an ASDEU study of autistic adults, carers, and professionals’ experiences

Author

Micai, M. (Martina), Ciaramella, A. (Antonio), Salvitti, T. (Tommaso), Fulceri, F. (Francesca), Fatta, L. M. (Laura Maria), Poustka, L. (Luise), Diehm, R. (Robert), Iskrov, G. (Georgi), Stefanov, R. (Rumen), Guillon, Q. (Quentin), Roge, B. (Bernadette), Staines, A. (Anthony), Sweeney, M. R. (Mary Rose), Boilson, A. M. (Andrew Martin), Leosdottir, T. (Thora), Saemundsen, E. (Evald), Moilanen, I. (Irma), Ebeling, H. (Hanna), Yliherva, A. (Anneli), Gissler, M. (Mika), Parviainen, T. (Tarja), Tani, P. (Pekka), Kawa, R. (Rafal), Vicente, A. (Astrid), Rasga, C. (Celia), Budisteanu, M. (Magdalena), Dale, I. (Ian), Povey, C. (Carol), Flores, N. (Noelia), Jenaro, C. (Cristina), Monroy, M. L. (Maria Luisa), Primo, P. G. (Patricia Garcia), Charman, T. (Tony), Cramer, S. (Susanne), Warberg, C. K. (Christine Kloster), Canal-Bedia, R. (Ricardo), Posada, M. (Manuel), Scattoni, M. L. (Maria Luisa), Schendel, D. (Diana), Micai, M. (Martina), Ciaramella, A. (Antonio), Salvitti, T. (Tommaso), Fulceri, F. (Francesca), Fatta, L. M. (Laura Maria), Poustka, L. (Luise), Diehm, R. (Robert), Iskrov, G. (Georgi), Stefanov, R. (Rumen), Guillon, Q. (Quentin), Roge, B. (Bernadette), Staines, A. (Anthony), Sweeney, M. R. (Mary Rose), Boilson, A. M. (Andrew Martin), Leosdottir, T. (Thora), Saemundsen, E. (Evald), Moilanen, I. (Irma), Ebeling, H. (Hanna), Yliherva, A. (Anneli), Gissler, M. (Mika), Parviainen, T. (Tarja), Tani, P. (Pekka), Kawa, R. (Rafal), Vicente, A. (Astrid), Rasga, C. (Celia), Budisteanu, M. (Magdalena), Dale, I. (Ian), Povey, C. (Carol), Flores, N. (Noelia), Jenaro, C. (Cristina), Monroy, M. L. (Maria Luisa), Primo, P. G. (Patricia Garcia), Charman, T. (Tony), Cramer, S. (Susanne), Warberg, C. K. (Christine Kloster), Canal-Bedia, R. (Ricardo), Posada, M. (Manuel), Scattoni, M. L. (Maria Luisa), and Schendel, D. (Diana)

Abstract

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.

Published
2022

3. Real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with services guidelines:results from the ASDEU study

Author

Scattoni, M. L. (Maria Luisa), Micai, M. (Martina), Ciaramella, A. (Antonio), Salvitti, T. (Tommaso), Fulceri, F. (Francesca), Fatta, L. M. (Laura Maria), Poustka, L. (Luise), Diehm, R. (Robert), Iskrov, G. (Georgi), Stefanov, R. (Rumen), Guillon, Q. (Quentin), Rogé, B. (Bernadette), Staines, A. (Anthony), Sweeney, M. R. (Mary Rose), Boilson, A. M. (Andrew Martin), Leósdóttir, T. (Thora), Saemundsen, E. (Evald), Moilanen, I. (Irma), Ebeling, H. (Hanna), Yliherva, A. (Anneli), Gissler, M. (Mika), Parviainen, T. (Tarja), Tani, P. (Pekka), Kawa, R. (Rafal), Vicente, A. (Astrid), Rasga, C. (Célia), Budişteanu, M. (Magdalena), Dale, I. (Ian), Povey, C. (Carol), Flores, N. (Noelia), Jenaro, C. (Cristina), Monroy, M. L. (Maria Luisa), Primo, P. G. (Patricia García), Charman, T. (Tony), Cramer, S. (Susanne), Warberg, C. K. (Christine Kloster), Canal-Bedia, R. (Ricardo), Posada, M. (Manuel), Schendel, D. (Diana), Scattoni, M. L. (Maria Luisa), Micai, M. (Martina), Ciaramella, A. (Antonio), Salvitti, T. (Tommaso), Fulceri, F. (Francesca), Fatta, L. M. (Laura Maria), Poustka, L. (Luise), Diehm, R. (Robert), Iskrov, G. (Georgi), Stefanov, R. (Rumen), Guillon, Q. (Quentin), Rogé, B. (Bernadette), Staines, A. (Anthony), Sweeney, M. R. (Mary Rose), Boilson, A. M. (Andrew Martin), Leósdóttir, T. (Thora), Saemundsen, E. (Evald), Moilanen, I. (Irma), Ebeling, H. (Hanna), Yliherva, A. (Anneli), Gissler, M. (Mika), Parviainen, T. (Tarja), Tani, P. (Pekka), Kawa, R. (Rafal), Vicente, A. (Astrid), Rasga, C. (Célia), Budişteanu, M. (Magdalena), Dale, I. (Ian), Povey, C. (Carol), Flores, N. (Noelia), Jenaro, C. (Cristina), Monroy, M. L. (Maria Luisa), Primo, P. G. (Patricia García), Charman, T. (Tony), Cramer, S. (Susanne), Warberg, C. K. (Christine Kloster), Canal-Bedia, R. (Ricardo), Posada, M. (Manuel), and Schendel, D. (Diana)

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.

Published
2021

4. Autistic adult health and professional perceptions of it:evidence from the ASDEU project

Author

Micai, M. (Martina), Ciaramella, A. (Antonio), Salvitti, T. (Tommaso), Fulceri, F. (Francesca), Fatta, L. M. (Laura Maria), Poustka, L. (Luise), Diehm, R. (Robert), Iskrov, G. (Georgi), Stefanov, R. (Rumen), Guillon, Q. (Quentin), Rogé, B. (Bernadette), Staines, A. (Anthony), Sweeney, M. R. (Mary Rose), Boilson, A. M. (Andrew Martin), Leósdóttir, T. (Thora), Saemundsen, E. (Evald), Moilanen, I. (Irma), Ebeling, H. (Hanna), Yliherva, A. (Anneli), Gissler, M. (Mika), Parviainen, T. (Tarja), Tani, P. (Pekka), Kawa, R. (Rafal), Vicente, A. (Astrid), Rasga, C. (Célia), Budişteanu, M. (Magdalena), Dale, I. (Ian), Povey, C. (Carol), Flores, N. (Noelia), Jenaro, C. (Cristina), Monroy, M. L. (Maria Luisa), Primo, P. G. (Patricia García), Charman, T. (Tony), Cramer, S. (Susanne), Warberg, C. K. (Christine Kloster), Canal-Bedia, R. (Ricardo), Posada, M. (Manuel), Scattoni, M. L. (Maria Luisa), Schendel, D. (Diana), Micai, M. (Martina), Ciaramella, A. (Antonio), Salvitti, T. (Tommaso), Fulceri, F. (Francesca), Fatta, L. M. (Laura Maria), Poustka, L. (Luise), Diehm, R. (Robert), Iskrov, G. (Georgi), Stefanov, R. (Rumen), Guillon, Q. (Quentin), Rogé, B. (Bernadette), Staines, A. (Anthony), Sweeney, M. R. (Mary Rose), Boilson, A. M. (Andrew Martin), Leósdóttir, T. (Thora), Saemundsen, E. (Evald), Moilanen, I. (Irma), Ebeling, H. (Hanna), Yliherva, A. (Anneli), Gissler, M. (Mika), Parviainen, T. (Tarja), Tani, P. (Pekka), Kawa, R. (Rafal), Vicente, A. (Astrid), Rasga, C. (Célia), Budişteanu, M. (Magdalena), Dale, I. (Ian), Povey, C. (Carol), Flores, N. (Noelia), Jenaro, C. (Cristina), Monroy, M. L. (Maria Luisa), Primo, P. G. (Patricia García), Charman, T. (Tony), Cramer, S. (Susanne), Warberg, C. K. (Christine Kloster), Canal-Bedia, R. (Ricardo), Posada, M. (Manuel), Scattoni, M. L. (Maria Luisa), and Schendel, D. (Diana)

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.

Published
2021

5. Early detection, diagnosis and intervention services for young children with autism spectrum disorder in the European Union (ASDEU):family and professional perspectives

Author

Bejarano-Martin, A. (Alvaro), Canal-Bedia, R. (Ricardo), Magan-Maganto, M. (Maria), Fernandez-Alvarez, C. (Clara), Cilleros-Martin, M. V. (Maria Victoria), Sanchez-Gomez, M. C. (Maria Cruz), Garcia-Primo, P. (Patricia), Rose-Sweeney, M. (Mary), Boilson, A. (Andrew), Linertova, R. (Renata), Roeyers, H. (Herbert), Van der Paelt, S. (Sara), Schendel, D. (Diana), Warberg, C. (Christine), Cramer, S. (Susanne), Narzisi, A. (Antonio), Muratori, F. (Filippo), Scattoni, M. L. (Maria Luisa), Moilanen, I. (Irma), Yliherva, A. (Anneli), Saemundsen, E. (Evald), Loa Jonsdottir, S. (Sigridur), Efrim-Budisteanu, M. (Magdalena), Arghir, A. (Aurora), Papuc, S. M. (Sorina Mihaela), Vicente, A. (Astrid), Rasga, C. (Celia), Roge, B. (Bernadette), Guillon, Q. (Quentin), Baduel, S. (Sophie), Kafka, J. X. (Johanna Xenia), Poustka, L. (Luise), Kothgassner, O. D. (Oswald D.), Kawa, R. (Rafal), Pisula, E. (Ewa), Sellers, T. (Tracey), Posada de la Paz, M. (Manuel), Bejarano-Martin, A. (Alvaro), Canal-Bedia, R. (Ricardo), Magan-Maganto, M. (Maria), Fernandez-Alvarez, C. (Clara), Cilleros-Martin, M. V. (Maria Victoria), Sanchez-Gomez, M. C. (Maria Cruz), Garcia-Primo, P. (Patricia), Rose-Sweeney, M. (Mary), Boilson, A. (Andrew), Linertova, R. (Renata), Roeyers, H. (Herbert), Van der Paelt, S. (Sara), Schendel, D. (Diana), Warberg, C. (Christine), Cramer, S. (Susanne), Narzisi, A. (Antonio), Muratori, F. (Filippo), Scattoni, M. L. (Maria Luisa), Moilanen, I. (Irma), Yliherva, A. (Anneli), Saemundsen, E. (Evald), Loa Jonsdottir, S. (Sigridur), Efrim-Budisteanu, M. (Magdalena), Arghir, A. (Aurora), Papuc, S. M. (Sorina Mihaela), Vicente, A. (Astrid), Rasga, C. (Celia), Roge, B. (Bernadette), Guillon, Q. (Quentin), Baduel, S. (Sophie), Kafka, J. X. (Johanna Xenia), Poustka, L. (Luise), Kothgassner, O. D. (Oswald D.), Kawa, R. (Rafal), Pisula, E. (Ewa), Sellers, T. (Tracey), and Posada de la Paz, M. (Manuel)

Abstract

Early services for ASD need to canvas the opinions of both parents and professionals. These opinions are seldom compared in the same research study. This study aims to ascertain the views of families and professionals on early detection, diagnosis and intervention services for young children with ASD. An online survey compiled and analysed data from 2032 respondents across 14 European countries (60.9% were parents; 39.1% professionals). Using an ordinal scale from 1 to 7, parents’ opinions were more negative (mean = 4.6; SD 2.2) compared to those of professionals (mean = 4.9; SD 1.5) when reporting satisfaction with services. The results suggest services should take into account child’s age, delays in accessing services, and active stakeholders’ participation when looking to improve services.

Published
2020

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