Access and cost of services for autistic children and adults in Italy: a carers' perspective.

Background: Limited information exists on autistic service access and costs in Italy. Objectives: This study aims to investigate access to educational, healthcare, social, and related services for autistic individuals in Italy as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Methods: Italian carers of autistic individuals completed an online survey regarding services and costs in the 6 months before completion. Results: Three hundred and three carers of autistic people participated in the survey. The majority of those receiving care were children, males, and lived at home with their parents. Autistic adults were often students (17%) or unemployed but willing to work (17%). Employed carers (49%) worked on average 32.23 ± 9.27 hours per week. A significant portion (82%) took work or school absences to care for autistic individuals, averaging 15.56 ± 14.70 days. On average, carers spent 58.84 ± 48.36 hours per week on caregiving duties. Fifty-five of the autistic individuals received some form of support, 5% utilized residential care, and 6% were hospitalized. Thirty-four percent received outpatient hospital care, and 20% underwent some form of autism-related psychopharmacological therapy. School support was primarily provided by support teachers (18.16 ± 7.02 hours/week). Educational psychologists (80.73%), psychomotor therapists/physiotherapists (53.85%), and speech therapists (50.91%) were frequently paid by carers who paid more per hour. Autistic children received support from educators (73.96 hours/week), group therapy (32.36 hours/week), and speech therapists (31.19 hours/week). Psychologists (76.00%) and counseling/individual therapists (89.13%) were often paid by carers. Carers reported high costs for psychiatrists and psychologists, with frequent use of psychiatric services (8 ± 8 times in 6 months). Conclusions: Carers' perspectives on the access and costs of services for autistic individuals in Italy can provide insights into areas for improvement in the delivery of autism services.

Prevalence of co-occurring conditions in children and adults with autism spectrum disorder: A systematic review and meta-analysis.

This systematic review estimates the prevalence of co-occurring conditions (CCs) in children and adults with autism. A comprehensive search strategy consulting existing guidelines, diagnostic manuals, experts, carers, and autistic people was developed. PubMed and PsycInfo databases from inception to May 2022 were searched. PROSPERO registration: CRD42019132347. Two blind authors screened and extracted the data. Prevalence estimates for different CCs were summarized by using random effects models. Subgroup analyses were performed for age groups (children/adolescents vs adults) and study designs (population/registry-based vs clinical sample-based). Of 19,932 studies, 340 publications with about 590,000 participants were included and meta-analyzed to estimate the prevalence of 38-point prevalence, 27-lifetime, and 3 without distinction between point and lifetime prevalence. Point prevalence of developmental coordination disorder, sleep-wake problem, gastrointestinal problem, ADHD, anxiety disorder, overweight/obesity, feeding and eating disorder, elimination disorder, disruptive behavior, and somatic symptoms and related disorder were the most frequent CCs. Prevalence differed depending on the age group and study design. Knowing specific CCs linked to autism helps professional investigations and interventions for improved outcomes.

Autism spectrum disorder prevalence in Italy: a nationwide study promoted by the Ministry of Health.

BACKGROUND: This nationwide study aimed to estimate Autism Spectrum Disorder (ASD) prevalence in 7-9-year-old Italian children. Promoted by Italy's Ministry of Health and coordinated by the National Observatory for Autism at the National Institute of Health, it covered schools in northern (Lecco and Monza-Brianza), central (Rome and its province), and southern (Palermo and its province) regions from February 24, 2016, to February 23, 2018, using a multi-stage approach defined by the European Union's ASD network. METHODS: Phase one identified ASD-diagnosed children in mainstream schools through local Ministry of Education (MoE) disability registries. Phase two had a subset of schools screen 7-9-year-olds using the Social Communication Questionnaire-Life version (SCQ-L). Those with SCQ-L scores of 15 + underwent clinical consultation for ASD symptoms, cognitive abilities, and life skills. To counter potential false negatives, 20% scoring 11-14 were randomly assessed via Autism Diagnostic Interview-Revised (ADI-R). RESULTS: MoE data revealed 9.8 per 1000 certified ASD children in the north, 12.2 in the central, and 10.3 in the south. In phase two, 35,823 SCQ-L questionnaires were distributed across 198 schools (northern: 11,190 in 49 schools, central: 13,628 in 87 schools, southern: 11,005 in 62 schools). Of SCQ-L respondents, 2.4% (n = 390) scored above the 15 cutoff. Among these, 100 had ASD diagnoses, and 50 had other diagnoses. Among 115 families assessed, 16.5% (n = 19) received ASD diagnoses. CONCLUSIONS: The estimated prevalence of ASD in Italy was 13.4 (11.3-16.0) per 1,000 children aged 7-9 years, with a male-to-female ratio of 4.4:1. It will guide national policies in enhancing services tailored to the specific needs of autistic children.

Mental Health among Italian Children and Adolescents during and after the SARS-CoV-2 Pandemic: A Professionals' Focus Group Study.

The SARS-CoV-2 pandemic had a negative impact on the mental health of children and adolescents. Eight focus groups and six individual hearings were conducted to gain insights from the perspectives of 97 Italian professionals from a variety of disciplines, including child and adolescent neuropsychiatrists, pediatricians, general practitioners, social workers, psychologists, teachers, school deans, non-governmental organizations, and a researcher. Urban and rural settings were represented. The present research has been promoted by the Italian Independent Authority for Children and Adolescents (Autorità Garante per l'Infanzia e l'Adolescenza, AGIA) in collaboration with the National Institute of Health (Istituto Superiore di Sanità, ISS) and the Ministry of Education and its scientific value has been supervised by a Scientific Committee. The results of the focus groups' discussions revealed increased vulnerability, with the onset of new mental health disorders in healthy individuals and those in a condition of disadvantage, migratory contexts, and with disabilities. The already critical pre-pandemic structural and operational issues of existing services have been exacerbated. In healthcare, the activation of telemedicine has been a great asset but at the same time has generated challenges and critical issues that are still unresolved. Professionals emphasized the need to pay special attention to planning integrated responses aimed at overcoming inequalities and fragmentation. The result of this initiative translates into a set of operational recommendations useful for guiding investments and policies directed toward the protection of the mental health of minors in the health, educational, and social spheres from the outset.

Building Bricks of Integrated Care Pathway for Autism Spectrum Disorder: A Systematic Review.

An integrated plan within a defined care pathway for the diagnosis, continuative interventions, and periodic redefinition of care of autistic people is essential for better outcomes. Challenges include delivering services across all domains or life stages and effective coordination between health/social care providers and services. Further, in the 'real world', service provision varies greatly, and in many settings is significantly weighted towards diagnosis and children's services rather than treatment and support or adult care. This study aims to identify existing care pathways for Autism Spectrum Disorder (ASD) from referral to care management after diagnosis. The study reviewed the international literature in PubMed and PsycInfo databases and collected information on care for autistic individuals from the Autism Spectrum Disorders in Europe (ASDEU) project partners. The study found that published data mainly focused on specific components of care pathways rather than an integrated and coordinated plan of care and legislative indications. They should be aimed at facilitating access to the services for support and the inclusiveness of autistic individuals. Given the need for care addressing the complex and heterogeneous nature of ASD, effective coordination between different health/social care providers and services is essential. It is also suggested that research priority should be given to the identification of an integrated care pathway 'model' centered around case management, individualization, facilitation, support, continuous training and updating, and quality management.

Emotion recognition in autism spectrum disorder across age groups: A cross-sectional investigation of various visual and auditory communicative domains.

Previous research on emotion processing in autism spectrum disorder (ASD) has predominantly focused on human faces and speech prosody, with little attention paid to other domains such as nonhuman faces and music. In addition, emotion processing in different domains was often examined in separate studies, making it challenging to evaluate whether emotion recognition difficulties in ASD generalize across domains and age cohorts. The present study investigated: (i) the recognition of basic emotions (angry, scared, happy, and sad) across four domains (human faces, face-like objects, speech prosody, and song) in 38 autistic and 38 neurotypical (NT) children, adolescents, and adults in a forced-choice labeling task, and (ii) the impact of pitch and visual processing profiles on this ability. Results showed similar recognition accuracy between the ASD and NT groups across age groups for all domains and emotion types, although processing speed was slower in the ASD compared to the NT group. Age-related differences were seen in both groups, which varied by emotion, domain, and performance index. Visual processing style was associated with facial emotion recognition speed and pitch perception ability with auditory emotion recognition in the NT group but not in the ASD group. These findings suggest that autistic individuals may employ different emotion processing strategies compared to NT individuals, and that emotion recognition difficulties as manifested by slower response times may result from a generalized, rather than a domain-specific underlying mechanism that governs emotion recognition processes across domains in ASD.

Technologies to support the diagnosis and/or treatment of neurodevelopmental disorders: A systematic review.

In recent years, there has been a great interest in utilizing technology in mental health research. The rapid technological development has encouraged researchers to apply technology as a part of a diagnostic process or treatment of Neurodevelopmental Disorders (NDDs). With the large number of studies being published comes an urgent need to inform clinicians and researchers about the latest advances in this field. Here, we methodically explore and summarize findings from studies published between August 2019 and February 2022. A search strategy led to the identification of 4108 records from PubMed and APA PsycInfo databases. 221 quantitative studies were included, covering a wide range of technologies used for diagnosis and/or treatment of NDDs, with the biggest focus on Autism Spectrum Disorder (ASD). The most popular technologies included machine learning, functional magnetic resonance imaging, electroencephalogram, magnetic resonance imaging, and neurofeedback. The results of the review indicate that technology-based diagnosis and intervention for NDD population is promising. However, given a high risk of bias of many studies, more high-quality research is needed.

Benefits and challenges of a personal budget for people with mental health conditions or intellectual disability: A systematic review.

Personal budgets (PBs) may improve the lives of people with mental health conditions and people with intellectual disability (ID). However, a clear definition of PB, benefits, and challenges is still faded. This work aims to systematically review evidence on PB use in mental health and ID contexts, from both a qualitative and quantitative perspective, and summarize the recent research on interventions, outcomes, and cost-effectiveness of PBs in beneficiaries with mental health conditions and/or ID. The present systematic review is an update of the existing literature analyzed since 2013. We performed a systematic search strategy of articles using the bibliographic databases PubMed and PsycINFO. Six blinded authors screened the works for inclusion/exclusion criteria, and two blinded authors extracted the data. We performed a formal narrative synthesis of the findings from the selected works. A total of 9,800 publications were screened, and 29 were included. Improvement in responsibility and awareness, quality of life, independent living, paid work, clinical, psychological, and social domains, and everyday aspects of the users' and their carers' life have been observed in people with mental health conditions and/or ID. However, the PBs need to be less stressful and burdensome in their management for users, carers, and professionals. In addition, more quantitative research is needed to inform PBs' policymakers. Systematic Review Registration: [www.crd.york.ac.uk/prospero/], identifier [CRD42020172607].

Autistic Adult Services Availability, Preferences, and User Experiences: Results From the Autism Spectrum Disorder in the European Union Survey.

There is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% <35 years old), 441 carers of autistic adults (27% female; 6% <35 years old), 175 professionals in adult services (76% female; 67% in non-medical services). Top choices by autistic adults, carers or professionals for services best suiting their current needs were: residential services: "help in own home" (adults, carers of high independent adults, professionals), "fulltime residential facility" (carers of low independent adults); employment services: "job mentors" (adults, carers of high independent adults, professionals), "Sheltered employment" (carers of low independent adults); education services: "support in regular education setting" (all groups); financial services: financial support in lieu of employment ("Supplementary income for persons unable to have full employment" for adults, "full pension" for carers of low independent adults) or to supplement employment earnings for carers of high independent adults and professionals; social services: "behavior training" (adults) and "life skills training" (carers and professionals). Waiting times for specific services were generally < 1 month or 1-3 months, except for residential services which could be up to 6 months; most professionals were uninformed of waiting times (>50% responded "don't know"). Five of seven residential services features recommended for autistic adults were experienced by <50% of adults. The knowledge of good local services models that work well for autistic adults was generally low across all services areas. The variation in services experiences and perceptions reported by autistic adults, carers, or professionals underscore the need to query all groups for a complete picture of community services availability and needs. The results showed areas for potential improvement in autistic adult services delivery in the EU to achieve recommended standards.

Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences.

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.

The Italian Network for Early Detection of Autism Spectrum Disorder: Research Activities and National Policies.

BACKGROUND: Well-structured monitoring system is crucial to identify interventions for children with Neurodevelopmental Disorders (NDD). SUBJECTS AND METHODS: The NIDA Network enrolled more than 760 at risk for NDD and typically developing infants to detect early signs of NDD. RESULTS: The NIDA Network was born in some Italian regions to engage clinical centers in a research project. It is increasingly turning out to be a national monitoring project well integrated in the Italian National Health System policies. CONCLUSIONS: The NIDA Network activities are finalized at diagnosis and interventions to improve quality of life of children with NDD and their families.

Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project.

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.

Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study.

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.

Reading Goals and Executive Function in Autism: An Eye-Tracking Study.

The sources of reading comprehension difficulties in people with autism spectrum disorder (ASD) are still open to discussion. We explored their ability to adapt reading strategies to different reading goals using eye-tracking technology. A group of participants with ASD, and intelligence-, receptive oral language- and reading skills-matched control peers, read three stories under three different reading goals conditions: read for entertainment; read for study; and read fast and search information for a previously presented question. Each text required participants to answer comprehension questions. The ASD group was less accurate in question answering. The control group was faster in reading questions, displayed more fixations on the text, and reported to be more confident in question answering during reading for study compared to reading for entertainment. These differences between reading goals were not observed in the ASD group. The control group adopted and was aware of using different reading strategies according to different reading goals. In contrast, the ASD group did not change their reading behavior and strategies between entertainment and study reading goal condition, showing less of a tendency to adopt deep-level processing strategies when necessary. Planning, as measured by Tower of Hanoi, was the only executive task that predicted individual differences in text reading time across conditions. Participants with better planning ability were also able to adapt their reading behavior to different reading instructions. Difficulties in adjusting the reading behavior according to the task, evaluating own performance and planning may be partly involved in reading comprehension problems in ASD. LAY ABSTRACT: The control group read questions faster, reported to be more confident in question answering during reading for study compared to reading for entertainment, and were aware of using different reading strategies according to different reading goals. In contrast, the autistic group did not change their reading behavior and strategies according to the reading goal. Difficulties in adjusting the reading behavior according to the task, in evaluating own performance and in planning may be partly involved in reading comprehension problems in autism. Autism Res 2021, 14: 1007-1024. © 2020 International Society for Autism Research, Wiley Periodicals, LLC.

Early behavioral markers for neurodevelopmental disorders in the first 3 years of life: An overview of systematic reviews.

Being able to recognize red flags for neurodevelopmental disorders (NDD) is crucial to provide timely intervention programs. This work aims to support - within a scientific framework - the construction of an instrument capable to early detect all spectrum of NDD and explore all areas of development, detect failures in typical developmental pathways and point out atypical signs at all ages. This overview of reviews provides evidence for differences in children later diagnosed with NDD compared to typically developing peers such as delays in motor, language development and temperament in the first three years of age, repetitive/stereotyped behaviors, atypicalities/delays in play, object use, attention, visual, sensory processing and social engagement in the first and second year, and difficulties in feeding and sleeping in the first year. These behaviors must be carefully observed as potential red flags for NDD. However, data of the systematic reviews are not yet useful to develop an evidence-based clinical screening. It urges to increase efforts in producing systematic reviews on early behavioral markers for each NDD. Trial registration:CRD42019137731. (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=137731).

Early Motor Development Predicts Clinical Outcomes of Siblings at High-Risk for Autism: Insight from an Innovative Motion-Tracking Technology.

Atypical motor patterns are potential early markers and predictors of later diagnosis of Autism Spectrum Disorder (ASD). This study aimed to investigate the early motor trajectories of infants at high-risk (HR) of ASD through MOVIDEA, a semi-automatic software developed to analyze 2D and 3D videos and provide objective kinematic features of their movements. MOVIDEA was developed within the Italian Network for early detection of Autism Spectrum Disorder (NIDA Network), which is currently coordinating the most extensive surveillance program for infants at risk for neurodevelopmental disorders (NDDs). MOVIDEA was applied to video recordings of 53 low-risk (LR; siblings of typically developing children) and 50 HR infants' spontaneous movements collected at 10 days and 6, 12, 18, and 24 weeks. Participants were grouped based on their clinical outcome (18 HR received an NDD diagnosis, 32 HR and 53 LR were typically developing). Results revealed that early developmental trajectories of specific motor parameters were different in HR infants later diagnosed with NDDs from those of infants developing typically. Since MOVIDEA was useful in the association of quantitative measures with specific early motor patterns, it should be applied to the early detection of ASD/NDD markers.

Do Individuals with Autism Change Their Reading Behavior to Adapt to Errors in the Text?

Reading monitoring is poorly explored, but it may have an impact on well-documented reading comprehension difficulties in autism. This study explores reading monitoring through the impact of instructions and different error types on reading behavior. Individuals with autism and matched controls read correct sentences and sentences containing orthographic and semantic errors. Prior to the task, participants were given instructions either to focus on semantic or orthographic errors. Analysis of eye-movements showed that the group with autism, differently from controls, were less influenced by the error's type in the regression-out to-error measure, showing less change in eye-movements behavior between error types. Individuals with autism might find it more difficult to adapt their reading strategies to various reading materials and task demands.

Strategies of readers with autism when responding to inferential questions: An eye-movement study.

Previous research suggests that individuals with autism spectrum disorder (ASD) have difficulties with inference generation in reading tasks. However, most previous studies have examined how well children understand a text after reading or have measured on-line reading behavior without response to questions. The aim of this study was to investigate the online strategies of children and adolescents with autism during reading and at the same time responding to a question by monitoring their eye movements. The reading behavior of participants with ASD was compared with that of age-, language-, nonverbal intelligence-, reading-, and receptive language skills-matched participants without ASD (control group). The results showed that the ASD group were as accurate as the control group in generating inferences when answering questions about the short texts, and no differences were found between the two groups in the global paragraph reading and responding times. However, the ASD group displayed longer gaze latencies on a target word necessary to produce an inference. They also showed more regressions into the word that supported the inference compared to the control group after reading the question, irrespective of whether an inference was required or not. In conclusion, the ASD group achieved an equivalent level of inferential comprehension, but showed subtle differences in reading comprehension strategies compared to the control group. Autism Res 2017, 10: 888-900. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

Executive Function Is Associated With Antisocial Behavior and Aggression in Athletes.

Poor executive function has been linked to increased antisocial and aggressive behavior in clinical and nonclinical populations. The present study investigated the relationship between executive and nonexecutive cognitive function and antisocial behavior in sport as well as reactive and proactive aggression. Cognitive function was assessed in young adult male and female athletes using the Cambridge Neuropsychological Test Automated Battery (CANTAB). Antisocial behavior in sport and aggression were assessed via self-report instruments and were found to be positively correlated. Executive function (but not nonexecutive function) scores were negatively correlated with both self-reported antisocial behavior and aggression in males but not females. Our findings suggest that prefrontal deficits among male athletes could contribute to poor impulse control and difficulty in anticipating the consequences of their antisocial and aggressive behavior.