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

LAY ABSTRACT: Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one's own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.

The ASDEU autism prevalence study in northern Spain.

The prevalence of autism spectrum disorders (ASD) was studied in children in the County of Gipuzkoa (Basque Country, Spain) as part of the European Union's Autism Spectrum Disorder in Europe project (ASDEU- https://asdeu.eu ). To identify cases in a total community sample of 7- to 9-year-old pupils (N = 14,734), a multistage approach was adopted: in the first stage, a teacher nomination (TN) form was completed by school teachers; and in the second stage, all families with a child nominated by their teachers were invited to complete the Social Communication Questionnaire (SCQ). A total of 108 (59%) schools participated fully, yielding a final sample of 9177 of 14.734 (61.9%) pupils. A total of 212 (2.3%) children were nominated via the TN form, and of these, 105 (49.5%) returned the completed SCQ. Twenty-five (23.8%) cases with SCQ scores ≥ 15 were invited to undergo a free clinical assessment, and 10 (40%) new cases of ASD were identified. The prevalence estimate included the 55 cases already being supported by the Gipuzkoa's only ASD association, the Gipuzkoa Autism Society (Asociación Guipuzcoana de Autismo/GAUTENA)), as well as the 10 new subjects identified by the ASDEU field diagnostic process. A sensitivity analysis was performed to estimate new potential ASD cases among the non-participant schools, leading to a final figure of 87 cases of ASD in this age-bracket at the date of the study. This global probabilistic estimate, including non-participating schools, would thus provide a population prevalence of 0.59% (95% CI 0.48-0.73), a result lower than those reported by some other studies. Attrition rates in cross-sectional studies are challenging and support the need for developing longitudinal ASD incidence surveillance study areas (ASD observatories).

Explaining Age at Autism Spectrum Diagnosis in Children with Migrant and Non-Migrant Background in Austria.

This study explored (i) differences in age at Autism Spectrum Disorder (ASD) diagnosis between children with and without a migrant background in the main diagnostic centre for ASD in Upper Austria (ii) factors related to the age at diagnosis and (iii) whether specific factors differed between the two groups. A retrospective chart analysis included all children who received their first diagnosis before the age of 10 years (n = 211) between 2013 and 2018. Children with a migrant background were diagnosed 13 months earlier than those without (r = 0.278, p < 0.001), and had more severe delays in language, more severe autism, no Asperger's syndrome, lower parental educational level and more frequent referrals by paediatricians. For the total sample, expressive language delay, severity of restricted and repetitive behaviours, higher nonverbal development, and paediatric referrals explained earlier diagnoses. There was a stronger effect of parental education and weaker effect of language impairment on age at ASD diagnosis in children with a migrant background. In conclusion, no delay in diagnosing ASD in children with a migrant background in a country with universal health care and an established system of paediatric developmental surveillance was found. Awareness of ASD, including Asperger's syndrome, should be raised among families and healthcare professionals.

Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives.

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.

Correction to: Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives.

The original version of this article unfortunately contained a mistake in one of the co-author's family name. The correct name should be María Victoria Martín-Cilleros instead of María Victoria Cilleros-Martín.

Building a theoretical framework for autism spectrum disorders screening instruments in Europe.

BACKGROUND: This study addresses the need for a theoretical base to develop more effective early autism spectrum disorders (ASD) detection tools. The structure that underlies early ASD detection is explored by evaluating the opinions of experts on ASD screening tools currently used in Europe. METHOD: A process of face and content validity was performed. First, the best constructs were selected from the relevant tests: Checklist for Early Signs of Developmental Disorders (CESDD), Checklist for Autism in Toddlers (CHAT), Early Screening of Autistic Traits Questionnaire (ESAT), Modified Checklist for Autism in Toddlers (M-CHAT), Social Communication Questionnaire (SCQ) and Communication and Symbolic Behaviour Scales Developmental Profile (CSBS-DP). The diagnostic content validity model by Fehring (1986, 1994) was adapted to make the selection. Afterwards, the items, taken from these tests, were selected to fit into each construct, using the same methodology. RESULTS: Twelve of the 18 constructs were selected by the experts and 11 items were chosen from a total of 130, reduced to eight after eliminating tautologies. CONCLUSIONS: Mapping these constructs and items on to the DSM-5 diagnostic criteria for ASD indicated good face and content validity. Results of this research will contribute to efforts to improve early ASD screening instruments and identify the key behaviours that experts in ASD see as the most relevant for early detection.

Early Detection and Intervention of ASD: A European Overview.

Over the last several years there has been an increasing focus on early detection of Autism Spectrum Disorder (ASD), not only from the scientific field but also from professional associations and public health systems all across Europe. Not surprisingly, in order to offer better services and quality of life for both children with ASD and their families, different screening procedures and tools have been developed for early assessment and intervention. However, current evidence is needed for healthcare providers and policy makers to be able to implement specific measures and increase autism awareness in European communities. The general aim of this review is to address the latest and most relevant issues related to early detection and treatments. The specific objectives are (1) analyse the impact, describing advantages and drawbacks, of screening procedures based on standardized tests, surveillance programmes, or other observational measures; and (2) provide a European framework of early intervention programmes and practices and what has been learnt from implementing them in public or private settings. This analysis is then discussed and best practices are suggested to help professionals, health systems and policy makers to improve their local procedures or to develop new proposals for early detection and intervention programmes.

European studies on prevalence and risk of autism spectrum disorders according to immigrant status-a review.

BACKGROUND: Autism spectrum disorders (ASDs), once considered to be rare, are now reaching prevalence estimates of 1% and higher. Studies conducted in North America indicate large racial/ethnic disparities in the diagnosis of ASDs. Others show, that immigrant children have similar prevalence rates of ASDs as native children, although they are diagnosed later compared with native children. In relation to a EU funded network action, Enhancing the Scientific Study of Early Autism, it was considered important to review the literature on this subject. METHOD: A comprehensive literature search was undertaken for original articles reporting on prevalence and risk for ASD in Europe among immigrants and ethnic minorities and data across studies were compared. RESULTS: Seventeen studies conducted in Europe concerning immigrants and ethnic minorities were found. Fifteen studies suggest a higher prevalence rate of ASDs among children of immigrants in comparison to native children (RR = 1.02-1.74; OR = 0.6-10.5). One study revealed higher prevalence of autism (OR = 2.2; 95% CI 1.6-3.1) and lower prevalence of Asperger syndrome in immigrants (OR = 0.6; 95% CI 0.3-0.97). One study showed a lower prevalence of Asperger syndrome in immigrants (aOR = 0.1, 95% CI 0.01-0.5). The majority of those analyses involved immigrants from outside Europe, e.g. from Africa and South America. CONCLUSION: After analysing the results of studies conducted in Europe, it is unclear if higher prevalence estimates of ASDs among immigrants in this region reflect true differences, especially considering many potential confounding factors, e.g. genetic, biological, environmental and cultural. Considering the number of people migrating within Europe there is a substantial need to study further the prevalence of ASDs in immigrant groups.

Use of early intervention for young children with autism spectrum disorder across Europe.

Little is known about use of early interventions for autism spectrum disorder in Europe. Parents of children with autism spectrum disorder aged 7 years or younger (N = 1680) were recruited through parent organisations in 18 European countries and completed an online survey about the interventions their child received. There was considerable variation in use of interventions, and in some countries more than 20% of children received no intervention at all. The most frequently reported interventions were speech and language therapy (64%) and behavioural, developmental and relationship-based interventions (55%). In some parts of Europe, use of behavioural, developmental and relationship-based interventions was associated with higher parental educational level and time passed since diagnosis, rather than with child characteristics. These findings highlight the need to monitor use of intervention for children with autism spectrum disorder in Europe in order to contrast inequalities.

[From early detection to early care: intervention strategies based on prospective screening]. / De la detección precoz a la atención temprana: estrategias de intervención a partir del cribado prospectivo.

INTRODUCTION. The challenge of early detection can be tackled from an evolutionary perspective. Early intervention treatments have shown themselves to be effective provided that they are applied systematically as part of the strategic planning of the treatment. AIMS. The aim of this study is to provide an updated review in response to the criticism targeted towards early detection and to offer some considerations on the intervention strategy. Our research is based on a review of the early care techniques that are commonly used within the field of autism and it intends to reflect the most significant aspects that can be deduced from the experiments and studies carried out to date. CONCLUSIONS. From the findings of the review it can be concluded that early detection may be more efficient if carried out within the framework of developmental surveillance, which also offers the opportunity to provide guidance on the child's development. Early care is an effective resource for attending to the needs of children with autism. Professionals have the duty to assess the work they do on available treatments with a reflexive, judicious attitude, taking into account the values and preferences of the families. Programmes must focus on the core symptoms and apply the active ingredients of the treatment.

TITLE: De la deteccion precoz a la atencion temprana: estrategias de intervencion a partir del cribado prospectivo.Introduccion. El reto de la deteccion precoz puede realizarse desde una perspectiva evolutiva. Los tratamientos de intervencion temprana han demostrado su eficacia siempre y cuando se apliquen sistematicamente en el marco de una planificacion estrategica del tratamiento. Objetivos. Proporcionar una revision actualizada para responder a las criticas a la deteccion precoz y aportar una reflexion sobre la estrategia de intervencion, basada en la revision de las tecnicas de atencion temprana usuales en el campo del autismo, reflejando los aspectos mas relevantes que se deducen de las experiencias y estudios llevados a cabo hasta el momento. Conclusiones. Tras la revision realizada se concluye que la deteccion precoz puede ser mas eficiente si se lleva a cabo en el marco de la vigilancia del desarrollo, que ademas ofrece la oportunidad de proporcionar orientacion sobre el desarrollo del menor. La atencion temprana constituye un recurso eficaz para atender las necesidades del menor con autismo. Los profesionales tienen la responsabilidad de evaluar el trabajo que hacen con una actitud reflexiva y critica sobre los tratamientos disponibles tomando en consideracion los valores y las preferencias de las familias. Los programas deben centrarse en los sintomas nucleares aplicando ingredientes activos del tratamiento.

[Screening and early care programmes in children with autism spectrum disorders]. / Programas de cribado y atención temprana en niños con trastornos del espectro autista.

INTRODUCTION: The need for effective methods of detection and treatment in the early stages of autism spectrum disorders is something that is currently accepted both by professional societies and by the healthcare authorities alike. Up-to-date comprehensive information about the screening procedures and early care techniques for children with autism spectrum disorders would make it easier to implement better detection devices as well as easing the job of counselling families and professionals about care and intervention at early ages in children. DEVELOPMENT: This study offers an updated review of the procedures for early detection and early care in autism, while reflecting the most relevant aspects that can be deduced from the experiments and studies conducted to date. CONCLUSIONS: The review carried out on trials involving the early detection of autism yields a group of important considerations to be taken into account in carry out critical analyses of screening programmes that are already under way, as well as a set of recommendations for future experiments. The review of the early care programmes provides a promising view because studies on the effectiveness of early care programmes are becoming increasingly more frequent, systematic and methodologically more appropriate.

TITLE: Programas de cribado y atencion temprana en niños con trastornos del espectro autista.Introduccion. La necesidad de la deteccion y de tratamientos eficaces de forma temprana para los trastornos del espectro autista es algo actualmente aceptado tanto por las sociedades profesionales como por la administracion sanitaria. Una informacion actualizada y sintetizada sobre los procedimientos de cribado y las tecnicas de atencion temprana para niños con trastornos del espectro autista facilitara la puesta en marcha de mejores dispositivos de deteccion y la labor de asesoramiento a familias y profesionales sobre la atencion e intervencion a edades tempranas de los niños. Desarrollo. Se proporciona una revision actualizada de los procedimientos de deteccion precoz y de atencion temprana en el autismo, reflejando los aspectos mas relevantes que se deducen de las experiencias y estudios llevados a cabo hasta el momento. Conclusiones. Tras la revision realizada sobre las experiencias de deteccion precoz de autismo, se obtiene un grupo de consideraciones importantes para realizar analisis criticos de programas de cribado en marcha, asi como recomendaciones para experiencias futuras. La revision sobre los programas de atencion temprana proporciona una vision esperanzadora porque cada vez son mas frecuentes, sistematicos y metodologicamente mas apropiados los estudios sobre la eficacia de los programas de atencion temprana.

Screening for autism spectrum disorders: state of the art in Europe.

A large number of studies have reported on the validity of autism spectrum disorder (ASD) screening procedures. An overall understanding of these studies' findings cannot be based solely on the level of internal validity of each, since screening instruments might perform differently according to certain factors in different settings. Europe has led the field with the development of the first screening tool and first prospective screening study of autism. This paper seeks to provide an overview of ASD screening studies and ongoing programmes across Europe, and identify variables that have influenced the outcomes of such studies. Results show that, to date, over 70,000 children have been screened in Europe using 18 different screening procedures. Differences among findings across studies have enabled us to identify ten factors that may influence screening results. Although it is impossible to draw firm conclusions as to which screening procedure is most effective, this analysis might facilitate the choice of a screening method that best fits a specific scenario, and this, in turn, may eventually improve early ASD detection procedures.

Modified checklist for autism in toddlers: cross-cultural adaptation and validation in Spain.

Early detection and treatment have been shown to be effective in reducing disability severity caused by Autistic Spectrum Disorders (ASDs). As Spanish pediatricians have no detection tool, the Modified Checklist for Autism in Toddlers (M-CHAT) was first translated into and culturally adapted to Spanish. Validity and reliability studies were carried out in two different geographical areas of Spain, where M-CHAT was administered to two different samples, namely: 2,480 high- and low-risk children; and 2,055 low-risk children. The results obtained were similar to those yielded by the original M-CHAT studies. Differences were found in positive predictive value, due to the low ASD frequency observed in this study. M-CHAT is still being studied in a large population-based screening program in Spain.