Epidemiology of ASD Services: Unmet Need, Barriers and Innovative Solutions

A special issue of Brain Sciences (ISSN 2076-3425). This special issue belongs to the section "Developmental Neuroscience".

Deadline for manuscript submissions: closed (31 December 2021) | Viewed by 24953

Special Issue Editors


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Guest Editor
Istituto Superiore di Sanità, Behavioural Sciences and Mental Health Reference Center, Rome, Italy
Interests: ASD services; mental health recovery projects; environmental risk factors for neurodevelopmental disorders; health disparities; epidemiology; animal models of neurodevelopmental toxicity

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Co-Guest Editor
Istituto Superiore di Sanità, Behavioural Sciences and Mental Health Reference Center, Rome, Italy
Interests: statistical analysis; clinical epidemiology; evidence based medicine; logistic regression; meta-analysis; study design; power analysis

Special Issue Information

Dear Colleagues,

Autism spectrum disorders (ASDs) are complex, lifelong, neurodevelopmental conditions of largely unknown cause. Individuals with ASD often present with other co-occurring conditions, including epilepsy, depression, anxiety and attention deficit hyperactivity disorder (ADHD). The level of intellectual functioning in individuals with ASDs is extremely variable, extending from profound impairment to superior levels. The lifelong burden of ASD challenges health and social services, and its wide heterogeneity requires highly specialized professionals able to integrate very different support needs. The provision of age-dependent services, able to offer both health and social support including educational, housing and job inclusion, is needed.

This Special Issue of Brain Sciences aims to present a collection of studies describing the most recent advancements in the field of the management of autism services and relevant epidemiology. Authors are invited to submit cutting-edge research and reviews that address a broad range of topics related to the availability of ASD services, their compliance with international recommendations, and factors potentially affecting the rate of service access. In particular, we aim to present advances in epidemiological research about child, adolescent and adult autism services that may have significant importance in the field of public health policies for ASD, including the impact of the COVID-19 pandemic.

Dr. Aldina Venerosi
Dr. Flavia Chiarotti
Guest Editors

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Keywords

  • Prevalence
  • Diagnosis protocols
  • Treatment and intervention
  • Transition to adulthood
  • Health, social and education services integration
  • Assessment and Management of psychiatric co-morbidity
  • Social and or disparity factors

Published Papers (8 papers)

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Editorial

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4 pages, 181 KiB  
Editorial
Editorial for Brain Sciences Special Issue “Epidemiology of ASD Services: Unmet Need, Barriers and Innovative Solutions”
by Aldina Venerosi and Flavia Chiarotti
Brain Sci. 2022, 12(7), 895; https://doi.org/10.3390/brainsci12070895 - 08 Jul 2022
Viewed by 1087
Abstract
We are very honoured by the collaboration we had with the editorial staff of Brain Sciences for the realization of the special issue “Epidemiology of ASD Services: Unmet Need, Barriers and Innovative Solutions” [...] Full article

Research

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16 pages, 288 KiB  
Article
Management of Autism Spectrum Disorder in Italian Units of Child and Adolescent Mental Health: Diagnostic and Referral Pathways
by Marta Borgi, Flavia Chiarotti, Gianfranco Aresu, Filippo Gitti, Elisa Fazzi, Angiolo Pierini, Teresa Sebastiani, Marco Marcelli, Renato Scifo, Paolo Stagi and Aldina Venerosi
Brain Sci. 2022, 12(2), 263; https://doi.org/10.3390/brainsci12020263 - 14 Feb 2022
Viewed by 2360
Abstract
Overall, the present pilot study provides detailed information on clinical management for Autism Spectrum Disorder (ASD) referral and diagnosis processes that are mandatory for child and adolescent mental health management. The analysis of ASD management, even if carried out on a selected sample [...] Read more.
Overall, the present pilot study provides detailed information on clinical management for Autism Spectrum Disorder (ASD) referral and diagnosis processes that are mandatory for child and adolescent mental health management. The analysis of ASD management, even if carried out on a selected sample of Child and Adolescent Mental Health (CAMH) units, represents a good approximation of how, in Italian outpatient settings, children and adolescents with ASD are recognised and eventually diagnosed. One of the aims of the study was to verify the adherence of Italian CAMH units to international recommendations for ASD referral and diagnosis and whether these processes can be traced using individual chart reports. Overall, the analysis evidenced that Italian CAMH units adopt an acceptable standard for ASD diagnosis, although the reporting of the ASD managing process in the individual chart is not always accurate. Furthermore, data collected suggest some improvements that CAMH units should implement to fill the gap with international recommendations, namely, establishing a multidisciplinary team for diagnosis, improving the assessment of physical and mental conditions by the use of standardised tools, implementing a specific assessment for challenging behaviours that could allow timely and specific planning of intervention. Full article
10 pages, 1357 KiB  
Article
Integrating a New Online Platform in Primary Care for Early Detection, Referral, and Intervention in Autism Spectrum Disorder: The First Italian Pivotal Project
by Paola Colombo, Noemi Buo, Silvia Busti Ceccarelli and Massimo Molteni
Brain Sci. 2022, 12(2), 256; https://doi.org/10.3390/brainsci12020256 - 12 Feb 2022
Cited by 5 | Viewed by 1738
Abstract
Autism spectrum disorder (ASD) is a heterogeneous condition characterized by deficits in social communication and a repetitive pattern of behavior, with recent Italian prevalence estimates of 1 in 77. Although the core behavioral features of ASD appear to emerge within the first two [...] Read more.
Autism spectrum disorder (ASD) is a heterogeneous condition characterized by deficits in social communication and a repetitive pattern of behavior, with recent Italian prevalence estimates of 1 in 77. Although the core behavioral features of ASD appear to emerge within the first two years of life, clinical diagnosis is often not received before the third birthday. The American Academy of Pediatrics (AAP) has recommended that primary care physicians routinely screen for ASD at the 18- and 24-month visits. In Italy, the Guidelines of the Italian National Institute for Health (ISS) recommend the Checklist for Autism in Toddlers (CHAT) as a screening tool for ASD, which compares parent responses with a semistructured observation by a healthcare provider. In the Italian National Health System, pediatricians have regular visits with all children; however, there is wide variability in following screening guidelines, and some barriers have been detected. For these reasons, other studies have highlighted the advantages of using telemedicine with the potential for enhancing ASD screening practices. The current study is an examination of the implementation of the first Italian online web-based screening tool (Web Italian Network for Autism Spectrum DisorderWIN4ASD), an innovative web app for pediatricians. We present the data obtained from the screening activity through the platform by a small group of pediatricians. The results of this study show that the implemented web-based platform appears to be an effective, efficient, and sustainable way to integrate screening services into primary care. Full article
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12 pages, 2360 KiB  
Article
The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
by Cinzia Correale, Marta Borgi, Francesca Cirulli, Fiorenzo Laghi, Barbara Trimarco, Maurizio Ferraro and Aldina Venerosi
Brain Sci. 2022, 12(2), 177; https://doi.org/10.3390/brainsci12020177 - 28 Jan 2022
Cited by 5 | Viewed by 3278
Abstract
Background: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens’ needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after the [...] Read more.
Background: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens’ needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after the transition to adulthood. Our study aimed to gather a comprehensive view on how parents of adults with ASD perceive (and interact with) health and social services, and how the provision of care impacts family quality of life with the aim to advise ASD intervention programs. The goal is to identify specific areas of change useful to influence autism intervention strategies so that they more effectively meet the needs of young people with autism and their families. Methods: We conducted two focus groups with parents of young adults with ASD. A semi-structured focus group methodology was adopted. The QoL conceptual framework guided data collection and analysis as part of a directed theory-driven content analysis approach. Results: The lack of structured care pathways and the low level of integration of different services were the main limits reported by parents during the focus group, while a shared positive perception of the experience conducted together as caring families emerged. Conclusions: The experience here reported claims for a greater role of the institutions in order to facilitate the building of networks that are really inclusive for persons with autism in society and to support the implementation of innovative solutions for the welfare system. Furthermore, parents stressed the need for the provision of support to the family. Full article
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13 pages, 1398 KiB  
Article
Towards-Person Vocalization Effect on Screening for Autism Spectrum Disorders in the Context of Frustration
by Min Feng, Mengyao Zhai, Juncai Xu, Ning Ding, Nana Qiu, Huan Shao, Peiying Jin and Xiaoyan Ke
Brain Sci. 2021, 11(12), 1651; https://doi.org/10.3390/brainsci11121651 - 16 Dec 2021
Cited by 1 | Viewed by 1985
Abstract
The purpose of this study is to investigate the vocalization characteristics of infants with autism spectrum disorder (ASD) in the context of frustration. The duration and frequency of vocalization in 48 infants with ASD and 65 infants with typical development (TD) were followed [...] Read more.
The purpose of this study is to investigate the vocalization characteristics of infants with autism spectrum disorder (ASD) in the context of frustration. The duration and frequency of vocalization in 48 infants with ASD and 65 infants with typical development (TD) were followed up to 24 months later for subsequent diagnosis. The typical vocalizations of infants with ASD were retrospectively analyzed, such as speech-like vocalizations, nonspeech vocalizations, vocalizations towards the person and non-social vocalizations. The results showed that, compared with the TD group, vocalizations of infants with ASD during the still-face period had lower typical vocalizations and characteristics associated with social intention, and that these characteristics were closely related to the clinical symptoms of ASD, among which vocalizations towards the person accompanied by social intention had discriminative efficacy. Full article
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Review

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30 pages, 1733 KiB  
Review
Dynamic and Systemic Perspective in Autism Spectrum Disorders: A Change of Gaze in Research Opens to A New Landscape of Needs and Solutions
by Cristina Panisi and Marina Marini
Brain Sci. 2022, 12(2), 250; https://doi.org/10.3390/brainsci12020250 - 11 Feb 2022
Cited by 3 | Viewed by 5518
Abstract
The first step for a harmonious bio-psycho-social framework in approaching autism spectrum disorders (ASD) is overcoming the conflict between the biological and the psychosocial perspective. Biological research can provide clues for a correct approach to clinical practice, assuming that it would lead to [...] Read more.
The first step for a harmonious bio-psycho-social framework in approaching autism spectrum disorders (ASD) is overcoming the conflict between the biological and the psychosocial perspective. Biological research can provide clues for a correct approach to clinical practice, assuming that it would lead to the conceptualization of a pathogenetic paradigm able to account for epidemiologic and clinical findings. The upward trajectory in ASD prevalence and the systemic involvement of other organs besides the brain suggest that the epigenetic paradigm is the most plausible one. The embryo-fetal period is the crucial window of opportunity for keeping neurodevelopment on the right tracks, suggesting that women’s health in pregnancy should be a priority. Maladaptive molecular pathways beginning in utero, in particular, a vicious circle between the immune response, oxidative stress/mitochondrial dysfunction, and dysbiosis-impact neurodevelopment and brain functioning across the lifespan and are the basis for progressive multisystemic disorders that account for the substantial health loss and the increased mortality in ASD. Therefore, the biological complexity of ASD and its implications for health requires the enhancement of clinical skills on these topics, to achieve an effective multi-disciplinary healthcare model. Well-balanced training courses could be a promising starting point to make a change. Full article
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Other

6 pages, 246 KiB  
Opinion
Project Extension for Community Health Outcomes (ECHO) Autism: A Successful Model to Increase Capacity in Community-Based Care
by Kristin Sohl, Agnieszka Rynkiewicz, Valeria Nanclares-Nogués, Alicia Brewer Curran, Julie Scorah, Mandy Steiman, Catherine Lord, Roma A. Vasa, Agnieszka Słopień, Małgorzata Janas-Kozik, Izabela Łucka and Artur Mazur
Brain Sci. 2022, 12(3), 327; https://doi.org/10.3390/brainsci12030327 - 28 Feb 2022
Cited by 7 | Viewed by 3087
Abstract
Individuals with autism spectrum disorder (ASD) struggle to access high-quality health care due to the shortage of trained providers. ECHO (Extension for Community Healthcare Outcomes) Autism is a unique educational program that allows ASD experts to provide knowledge and skills to professionals [...] Read more.
Individuals with autism spectrum disorder (ASD) struggle to access high-quality health care due to the shortage of trained providers. ECHO (Extension for Community Healthcare Outcomes) Autism is a unique educational program that allows ASD experts to provide knowledge and skills to professionals in local communities to deliver evidence-based care to children with ASD and their families. The model teaches clinicians how to screen and diagnose ASD, as well as manage common co-occurring medical and mental health issues. ECHO Autism is particularly useful for addressing the complex needs of children with ASD and reducing disparities often present in rural and underserved communities. The model can be disseminated globally due to its flexibility in accommodating local and regional differences in social norms and constructs. This article provides an overview of the format of the ECHO Autism model, data supporting the model’s efficacy, and discusses future research directions. Full article
12 pages, 2224 KiB  
Perspective
Multimedia Interventions for Neurodiversity: Leveraging Insights from Developmental Cognitive Neuroscience to Build an Innovative Practice
by Teresa Farroni, Irene Valori and Laura Carnevali
Brain Sci. 2022, 12(2), 147; https://doi.org/10.3390/brainsci12020147 - 23 Jan 2022
Cited by 6 | Viewed by 3131
Abstract
Multimedia technologies and virtual reality offer unique possibilities to manipulate sensory, motor, interpersonal, and cognitive processes contributing to atypical developmental trajectories, thus holding an explosive potential to design innovative and engaging interventions. However, there has been little progress in developing interventions that go [...] Read more.
Multimedia technologies and virtual reality offer unique possibilities to manipulate sensory, motor, interpersonal, and cognitive processes contributing to atypical developmental trajectories, thus holding an explosive potential to design innovative and engaging interventions. However, there has been little progress in developing interventions that go beyond the patient’s diagnosis or the fascination of technology and rather spring from a deep understanding of the specific neuropsychological processes to be nurtured in individuals. This perspective paper outlines how recent insights from developmental cognitive neuroscience can be leveraged to promote children’s multidimensional development and highlight future directions and challenges for innovating both research and clinical practice. Finally, we focus on some practical examples of multimedia and virtual reality activities we have designed to stimulate bodily-self experiences, which are crucial for building up a coherent sense of self and lay the foundation for interacting with the external world. Atypical bodily self is an early marker of heterogeneous neurodevelopmental conditions (such as autism spectrum disorders) and seems to be under-targeted in research and clinical approaches. Full article
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