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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

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DOI

  • Maria Luisa Scattoni, Istituto Superiore di Sanita
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  • Martina Micai, Istituto Superiore di Sanita
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  • Antonio Ciaramella, Istituto Superiore di Sanita
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  • Tommaso Salvitti, Istituto Superiore di Sanita
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  • Francesca Fulceri, Istituto Superiore di Sanita
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  • Laura Maria Fatta, Istituto Superiore di Sanita
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  • Luise Poustka, University of Göttingen
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  • Robert Diehm, Medical University of Vienna
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  • Georgi Iskrov, Institute for Rare Diseases, Medical University of Plovdiv
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  • Rumen Stefanov, Institute for Rare Diseases, Medical University of Plovdiv
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  • Quentin Guillon, Universite de Toulouse II - Le Mirail
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  • Bernadette Rogé, Universite de Toulouse II - Le Mirail
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  • Anthony Staines, Dublin City University
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  • Mary Rose Sweeney, Dublin City University
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  • Andrew Martin Boilson, Dublin City University
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  • Thora Leósdóttir, The State Diagnostic and Counseling Center
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  • Evald Saemundsen, The State Diagnostic and Counseling Center
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  • Irma Moilanen, University of Oulu
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  • Hanna Ebeling, University of Oulu
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  • Anneli Yliherva, University of Oulu
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  • Mika Gissler, Finnish Institute for Health and Welfare, University of Turku, Karolinska Institutet
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  • Tarja Parviainen, Finnish Association for Autism and Asperger’s Syndrome
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  • Pekka Tani, University of Helsinki
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  • Rafal Kawa, University of Warsaw
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  • Astrid Vicente, Instituto Nacional de Saude Dr. Ricardo Jorge
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  • Célia Rasga, Instituto Nacional de Saude Dr. Ricardo Jorge
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  • Magdalena Budişteanu, Victor Babes National Institute
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  • Ian Dale, National Autistic Society
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  • Carol Povey, National Autistic Society
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  • Noelia Flores, Universidad de Salamanca
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  • Cristina Jenaro, Universidad de Salamanca
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  • Maria Luisa Monroy, Universidad de Salamanca
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  • Patricia García Primo, Instituto de Salud Carlos III
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  • Tony Charman, King's College London
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  • Susanne Cramer
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  • Christine Kloster Warberg
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  • Ricardo Canal-Bedia, Universidad de Salamanca
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  • Manuel Posada, Instituto de Salud Carlos III
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  • Diana Schendel

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.

Original languageEnglish
JournalJournal of Autism and Developmental Disorders
Volume51
Issue11
Pages (from-to)4129–4146
ISSN0162-3257
DOIs
Publication statusPublished - Nov 2021

Bibliographical note

Publisher Copyright:
© 2021, The Author(s).

    Research areas

  • Adults, Autism spectrum disorder, Diagnosis, Services

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