Autism care pathway in Europe.

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.

Predictors of autism spectrum disorder diagnosis in a spanish sample of preterm children with very low birthweight: A cross-sectional study.

Background and Aims: Autism spectrum disorder (ASD) is a neurodevelopmental disorder with a higher likelihood of being diagnosed in preterm populations. Likewise, low birthweight has also been connected with an increased likelihood of ASD. The objectives were to study the frequency and define the relationship between ASD, gestational age, birthweight, and growth percentiles for preterm children. Methods: A sample of preterm children with very low birthweight was selected from the Spanish population at 7-10 years old. Families were contacted from the hospital, and they were offered an appointment to conduct a neuropsychological assessment. The children who showed signs of ASD were referred to the diagnostic unit for differential diagnosis. Results: A total of 57 children completed full assessments, with 4 confirmed ASD diagnoses. The estimated prevalence was 7.02%. There were statistically significant weak correlations between ASD and gestational age (τb = -0.23), and birthweight (τb = -0.25), suggesting there is a higher likelihood of developing ASD for those born smaller or earlier in their gestation. Conclusion: These results could improve ASD detection and outcomes for this vulnerable population while also supporting and enhancing previous findings.

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.

Effect of a Focused Social and Communication Intervention on Preterm Children with ASD: A Pilot Study.

While advances in intensive neonatal care have greatly improved survival rates among preterm infants, incidence of neurodevelopmental disorders in this group is still high, with autism spectrum disorder (ASD) being one of the most frequent. To this end, we conducted a social-communication intervention aimed at investigating efficacy in social-communicative skills. Eighteen children (preterm and full-term with ASD and preterm children) aged 18 through 20 months participated in the study. Our findings indicate that most participants in the intervention groups registered significant improvements in terms of socio-communicative skills, cognitive development, and language. Accordingly, these pilot data underscore the need for further research and implementation of early interventions in young preterm children with ASD.

Spanish Cultural Validation of the Modified Checklist for Autism in Toddlers, Revised.

The Modified Checklist for Autism in Toddlers-revised/follow-up (M-CHAT-R/F) was developed to reduce the number of cases requiring telephone verification. The aim of this study was to validate a Spanish version of the M-CHAT-R/F in the Spanish public health system. The M-CHAT-R/F was translated, culturally adapted, and then administered to 6625 children. Of the 39 positive screening cases, 15 children were diagnosed with autism spectrum disorder (ASD) and 24 with non-ASD disorders or delays. The sensitivity was 0.79 and specificity of 0.99. Positive and negative predictive values were 0.39 and 0.99, respectively. These results are similar to the English equivalent, though observed prevalence was lower. This study supports Spanish National Health System policy makers to consider a universal ASD screening program.

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.

Trastorno del espectro autista y prematuridad: hacia un programa de cribado prospectivo / Autism spectrum disorder and prematurity: towards a prospective screening program

Introducción. La prevalencia de trastornos del espectro autista (TEA) comunicada en estudios actuales en grupos de riesgo como son los recién nacidos pretermino o con bajo peso al nacer, es más alta que en la población normal. Este hecho ha supuesto el incremento en los últimos anos de estudios de cribado que investigan posibles factores de riesgo de TEA en los recién nacidos pretermino y su trayectoria evolutiva. Objetivo. Exponer los resultados de los principales estudios de cribado de recién nacidos pretermino a fin de presentar recomendaciones de cribado en esta población de riesgo. Desarrollo. Los resultados de los estudios presentados sugieren la posibilidad de que la trayectoria del desarrollo sociocomunicativo y conductual de los recién nacidos pretermino difiera de lo esperado si su nacimiento se hubiera producido a término, lo que apoya el hecho de que se realicen programas de cribado basados en una monitorización evolutiva del desarrollo y se utilicen herramientas de cribado adaptadas a esta población de riesgo. Conclusión. Los menores prematuros son un grupo de riesgo que muestra características diferenciales para el cribado de TEA (AU)

Introduction. The prevalence of autism spectrum disorders (ASD) reported in current studies in risk groups such as preterm or low birth weight infants is higher than in the normal population. This fact has led to the increase in recent years of screening studies that investigate possible risk factors for ASD in preterm newborns and their developmental trajectory. Aim. To present the results of the main screening studies of preterm newborns in order to propose screening recommendations for this population at risk. Development. The results of the studies presented suggest the possibility that the trajectory of socio-communicative and behavioral development of preterm infants differed from what was expected if their birth had occurred at term. This supports the fact that screening programs are carried out based on developmental surveillance and that it is advisable to use screening tools adapted to this population at risk. Conclusion. Premature children are a risk group that shows differential characteristics for the screening of ASD (AU)

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.

Detección precoz y estabilidad en el diagnóstico en los trastornos del espectro autista / Early detection and stability of diagnosis in autism spectrum disorders

Introducción. La intervención temprana en los niños con un trastorno del espectro autista (TEA) depende de una detección precoz y fiable. Aunque de manera general se habla de un diagnóstico estable, se ha evidenciado la necesidad de profundizar más en los factores que influyen en dicha estabilidad. Pacientes y métodos. Los participantes de la muestra fueron 142 menores con TEA (118 varones y 24 mujeres), con una mediana de 33 meses y un recorrido intercuartílico de 12 en la primera evaluación, y con una mediana de 47 meses y un recorrido intercuartílico de 29 en el seguimiento. Los diagnósticos se realizaron con las siguientes pruebas: escala Merrill Palmer revisada, escala de Leiter revisada, escala de inteligencia de Wechsler para preescolar y primaria III y escala de inteligencia de Wechsler para niños revisada y IV; además de la escala Vineland y la escala de observación diagnóstica del autismo genérica (ADOS-G), basándose el diagnóstico clínico en los criterios diagnósticos del Manual diagnóstico y estadístico de los trastornos mentales, cuarta edición, texto revisado (DSM-IV-TR), y quinta edición (DSM-5). Para la evaluación de la estabilidad diagnóstica, se realizaron tablas de contingencia para las valoraciones del diagnóstico en función del juicio clínico y los resultados de la ADOS-G. Resultados. El diagnóstico clínico basado en los criterios del DSM-IV-TR, el DSM-5 y el juicio clínico se mantiene estable a través del tiempo en un 96% de los casos. Si se valora la estabilidad diagnóstica teniendo en cuenta los resultados del ADOS-G (n = 30), el 87% de los casos mantiene el diagnóstico. El ANOVA muestra diferencias estadísticamente significativas para las medidas del factor intrasujeto del cociente intelectual y la edad social global, pero no para el diagnóstico. Conclusiones. La estabilidad diagnóstica se beneficia de un uso informado del criterio clínico y de la participación de un equipo multidisciplinar (AU)

Introduction. Early intervention for children with an autism spectrum disorder (ASD) depends on early and reliable detection. In general, diagnosis is stable, but evidence shows the need to go deeper into the factors that influence this stability. Patients and methods. A sample of 142 children with ASD (118 boys and 24 girls) with a median of 33 months of age and an interquartile range of 12 in the first evaluation. In the follow-up the median was 47 months and an interquartile range of 29. The following tests were applied to evaluate the children: Merrill-Palmer Scale-R, Leitter-R, WIPPSI-III, WISC-R and WISC-IV; as well as Vineland Scale and ADOS-G, based on clinical diagnosis to DSM-IV-R and DSM-5. For the evaluation of the diagnostic stability, contingency tables were performed for diagnostic assessments based on clinical judgment and the results of the ADOS-G. Repeated measures ANOVA was used to analyze the differences between measures of cognitive functioning, adaptive behavior and diagnosis. Results. The clinical diagnosis based on DSM-IV-TR, DSM-5 and clinical judgment remains stable over time in 96% of cases. If the diagnostic stability is measured based on the results of ADOS-G (n = 30), 87% of cases diagnosed maintained the diagnosis. The ANOVA showed statistically significant differences for measures of within-subject factors and global social age, but not for diagnosis. Conclusion. The diagnostic stability can be improved by utilizing clinical judgment and the participation of a multidisciplinary team (AU)