Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study

Guillon, Quentin; Baduel, Sophie; Bejarano‐Martín, Álvaro; Canal‐Bedia, Ricardo; Magán‐Maganto, María; Fernández‐Álvarez, Clara; Cilleros, María Victoria Martín; Sánchez-Gómez, María Cruz; García-Primo, Patricia; Boilson, Andrew; Linertová, Renata; Roeyers, Herbert; Paelt, Sara Van der; Schendel, Diana; Warberg, Christine Kloster; Cramer, Susanne; Narzisi, Antonio; Muratori, Filippo; Scattoni, María Luisa; Moilanen, Irma; Yliherva, Anneli; Sæmundsen, Evald; Jónsdóttir, Sigríður Lóa; Efrim-Budisteanu, Magdalena; Arghir, Aurora; Papuc, Sorina Mihaela; Vicente, Astrid M.; Rasga, Célia; Kafka, Johanna Xenia; Poustka, Luise; Kothgassner, Oswald D.; Kawa, Rafał; Pisula, Ewa; Sellers, Tracey; Паз, Мануел Посада де ла; Rogé, Bernadette

doi:10.1177/13623613221080318

Cited by 4 publications

(1 citation statement)

References 63 publications

(118 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Added to this, once concerns were raised, a high percentage (62%) of respondents reported that it was not easy to access information about early detection services. This gap seems to be caused by lack of information and awareness about autism, early signs of autism, and services availability among the general population [20, 22, 31].…”

Section: Discussionmentioning

confidence: 99%

Autism care pathway in Europe

Mendez,

Oakley,

Canitano

et al. 2023

Eur. Psychiatr.

Self Cite

View full text Add to dashboard Cite

Background Autism is a lifelong complex neurodevelopmental condition that affects brain development and behaviour with significant consequences for everyday life. Despite its personal, familial, and societal impact, Europe-wide harmonised guidelines are still lacking for early detection, diagnosis, and intervention, leading to an overall unsatisfactory autistic person and carer journey. Methods The care pathway for autistic children and adolescents was analysed in Italy, Spain and the UK from the perspective of carers (using a survey aimed at caregivers of autistic children 0–18 years old), the autistic community, and professionals in order to identify major barriers (treatment gaps) preventing carers from receiving information, support, and timely screening/diagnosis and intervention. Results Across all three countries, analysis of the current care pathway showed: long waits from the time carers raised their first concerns about a child’s development and/or behaviour until screening and confirmed diagnosis; delayed or no access to intervention once a diagnosis was confirmed; limited information about autism and how to access early detection services; and deficient support for families throughout the journey. Conclusions These findings call for policy harmonisation in Europe to shorten long wait times for diagnosis and intervention and therefore, improve autistic people and their families’ journey experience and quality of life.

show abstract

Section: Discussionmentioning

confidence: 99%

Autism care pathway in Europe

Mendez,

Oakley,

Canitano

et al. 2023

Eur. Psychiatr.

Self Cite

View full text Add to dashboard Cite

show abstract

Differences Between Black and White Caregivers in the Association Between Autism Diagnostic Process Satisfaction and Service Use

Fisher,

Lynch

2024

J Autism Dev Disord

View full text Add to dashboard Cite

Background Black families of children with autism spectrum disorder have less access to high quality, culturally responsive care for their children. Method We assessed satisfaction and service utilization among fifty (29%) Black caregivers and 124 (71%) White caregivers of children with autism spectrum disorder. We also examined whether race moderated the association between satisfaction and service utilization. Results We did not identify racial differences in satisfaction or service utilization. Race moderated the association between satisfaction and total service use, F(170) = 5.29, p =.02, therapy service use, F(163) = 3.59, p =.046, and community service use, F(169) = 4.76, p =.046. For Black families, there was a positive association between satisfaction and service use. There was no association between satisfaction and service use among White families. Discussion Satisfaction may be particularly important among Black families, who have been mistreated by the healthcare system and frequently face discrimination. Our results suggest the importance of culturally responsive care for Black families.

show abstract

Identifying autistic children: Priorities for research arising from a systematic review of parents’ experiences of the assessment process

O’Neill,

O’Donnell

2024

Autism

View full text Add to dashboard Cite

Our goal was to systematically identify, appraise and synthesise the qualitative research on parents’ experiences of the autism assessment process. The empirical studies were quality appraised using the Critical Appraisal Skills Programme tool. We synthesised the data using a meta-synthesis approach. Parents’ experiences were categorised into four phases namely: the pre-identification phase, the identification process, emotional reactions to the identification of the children as autistic and the post-identification phase. Informed by the social and human rights discourse on disability, we provide recommendations for future research, respecting the rights of all concerned. We discuss the implications of this review for future research into the autism assessment process. Parents consistently mentioned the importance of professional communication and we make recommendations for research on parent–professional partnerships. Given the sensitivities of the issues, we draw attention to ethical considerations when conducting research on the autism assessment process. Finally, we address the strategies that professionals can adopt in applying neurodiversity-affirmative approaches when identifying autistic children and supporting their parents. Lay Abstract Hearing about parents’ experiences of having their child recognised as autistic could help improve the supports offered to parents. Our article may also help guide future research on this topic. We made a list of the type of research that interested us. We searched the studies already completed, only studying the research that matched our interests. After reading the studies, we rated their quality using the Critical Appraisal Skills Programme tool. It became clear that parents went through four phases during the identification process. The first phase occurred before their child was identified as autistic. The second involved the actual assessment of their child. Parents’ emotional reactions to the news were the focus of the third phase. The final phase occurred after their child was identified as autistic. We discuss the findings of our research. As there are sensitivities involved in conducting research on this topic, we identify how researchers can ensure that their research is of the best quality. We are committed to respecting the human rights of all involved, so we emphasise the need for professionals to develop good relationships with the parents of autistic children. Researchers have recently come to see autism as typical of human diversity. We encourage the professionals involved to adopt this understanding of autistic children and make practical suggestions to enable them to do so.

show abstract

Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study

Cited by 4 publications

References 63 publications

Autism care pathway in Europe

Autism care pathway in Europe

Differences Between Black and White Caregivers in the Association Between Autism Diagnostic Process Satisfaction and Service Use

Identifying autistic children: Priorities for research arising from a systematic review of parents’ experiences of the assessment process

Contact Info

Product

Resources

About