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.

The teleNIDA: Early Screening of Autism Spectrum Disorder Through a Novel Telehealth Approach.

The COVID-19 pandemic has fast-tracked interest in telehealth methods to guarantee the continuity of care of children with Autism Spectrum Disorder (ASD). Store-and-forward telehealth approaches offer the opportunity to facilitate timely screening of ASD, allowing parents to record videos of their child's behaviors, subsequently shared with clinicians that provide an assessment remotely. This study aimed to examine the psychometric properties of a new telehealth screening tool, the teleNIDA, administered in home settings for remote observation of early signs of ASD in toddlers aged 18-30 months. Results showed good psychometric properties of the teleNIDA, as compared to the gold standard in-person assessment, and the predictive validity on the diagnosis of ASD at 36 months was demonstrated. This study supports the teleNIDA as a promising level 2 screening tool for ASD able to speed up diagnostic and intervention processes.

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.

Acting with shared intentions: A systematic review on joint action coordination in Autism Spectrum Disorder.

BACKGROUND: Joint actions, described as a form of social interaction in which individuals coordinate their actions in space and time to bring about a change in the environment, rely on sensory-motor processes that play a role in the development of social skills. Two brain networks, associated with "mirroring" and "mentalizing", are engaged during these actions: the mirror neuron and the theory of mind systems. People with autism spectrum disorder (ASD) showed impairment in interpersonal coordination during joint actions. Studying joint action coordination in ASD will contribute to clarify the interplay between sensory-motor and social processes throughout development and the interactions between the brain and the behavior. METHOD: This review focused on empirical studies that reported behavioral and kinematic findings related to joint action coordination in people with ASD. RESULTS: Literature on mechanisms involved in the joint action coordination impairment in ASD is still limited. Data are controversial. Different key-components of joint action coordination may be impaired, such as cooperative behavior, temporal coordination, and motor planning. CONCLUSIONS: Interpersonal coordination during joint actions relies on early sensory-motor processes that have a key role in guiding social development. Early intervention targeting the sensory-motor processes involved in the development of joint action coordination could positively support social skills.

Impact of antipsychotics in children and adolescents with autism spectrum disorder: a systematic review and meta-analysis.

BACKGROUND: The net health benefit of using antipsychotics in children and adolescents with ASD is unclear. This review was performed to provide the evidence necessary to inform the Italian national guidelines for the management of ASD. METHODS: We performed a systematic review of randomized controlled trials (RCTs) comparing antipsychotics versus placebo for the treatment of ASD in children and adolescents. For efficacy, acceptability and safety we considered outcomes evaluated by the guideline panel critical and important for decision-making. Continuous outcomes were analyzed by using standardized mean difference (SMD), and dichotomous outcomes by calculating the risk ratio (RR), with their 95% confidence interval (95% CI). Data were analyzed using a random effects model. We used the Cochrane tool to assess risk of bias of included studies. Certainty in the evidence of effects was assessed according to the GRADE approach. RESULTS: We included 21 RCTs with 1,309 participants, comparing antipsychotics to placebo. Antipsychotics were found effective on "restricted and repetitive interests and behaviors" (SMD - 0.21, 95% CI - 0.35 to - 0.07, moderate certainty), "hyperactivity, inattention, oppositional, disruptive behavior" (SMD - 0.67, 95% CI - 0.92 to - 0.42, moderate certainty), "social communication, social interaction" (SMD - 0.38, 95% CI - 0.59 to - 0.16, moderate certainty), "emotional dysregulation/irritability" (SMD - 0.71, 95% CI - 0.98 to - 0.43, low certainty), "global functioning, global improvement" (SMD - 0.64, 95% CI - 0.96 to - 0.33, low certainty), "obsessions, compulsions" (SMD - 0.30, 95% CI - 0.55 to - 0.06, moderate certainty). Antipsychotics were not effective on "self-harm" (SMD - 0.14, 95% CI - 0.58 to 0.30, very low certainty), "anxiety" (SMD - 0.38, 95% CI - 0.82 to 0.07, very low certainty). Antipsychotics were more acceptable in terms of dropout due to any cause (RR 0.61, 95% CI 0.48 to 0.78, moderate certainty), but were less safe in terms of patients experiencing adverse events (RR 1.19, 95% CI 1.07 to 1.32, moderate certainty), and serious adverse events (RR 1.07, 95% CI 0.48 to 2.43, low certainty). CONCLUSIONS: Our systematic review and meta-analysis found antipsychotics for children and adolescents with ASD more efficacious than placebo in reducing stereotypies, hyperactivity, irritability and obsessions, compulsions, and in increasing social communication and global functioning. Antipsychotics were also found to be more acceptable, but less safe than placebo.

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.

Acceptability, equity, and feasibility of using antipsychotics in children and adolescents with autism spectrum disorder: a systematic review.

BACKGROUND: It is unclear whether the administration of antipsychotics to children and adolescents with autism spectrum disorders (ASD) is acceptable, equitable, and feasible. METHODS: We performed a systematic review to support a multidisciplinary panel in formulating a recommendation on antipsychotics, for the development of the Italian national guidelines for the management of ASD. A comprehensive search strategy was performed to find data related to intervention acceptability, health equity, and implementation feasibility. We used quantitative data from randomized controlled trials to perform a meta-analysis assessing the acceptability and tolerability of antipsychotics, and we estimated the certainty of the effect according to the GRADE approach. We extracted data from systematic reviews, primary studies, and grey literature, and we assessed the risk of bias and methodological quality of the published studies. RESULTS: Antipsychotics were acceptable (dropouts due to any cause: RR 0.61, 95% CI 0.48-0.78, moderate certainty of evidence) and well tolerated (dropouts due to adverse events: RR 0.99, 95% CI 0.55-1.79, low certainty of evidence) by children and adolescents with ASD. Parents and clinicians did not raise significant issues concerning acceptability. We did not find studies reporting evidence of reduced equity for antipsychotics in disadvantaged subgroups of children and adolescents with ASD. Workloads, cost barriers, and inadequate monitoring of metabolic adverse events were indirect evidence of concerns for feasibility. CONCLUSION: Antipsychotics in children and adolescents with ASD were likely acceptable and possibly feasible. We did not find evidence of concern for equity.

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.

Movidea: A Software Package for Automatic Video Analysis of Movements in Infants at Risk for Neurodevelopmental Disorders.

Early detecting the presence of neurodevelopmental disorders plays an important role in the effectiveness of the treatment. In this paper, we present a novel tool to extract motion features using single camera video recordings of infants. The Movidea software was developed to allow the operator to track the movement of end-effectors of infants in free moving conditions and extract movement features automatically. Movidea was used by different operators to analyze a set of video recordings and its performance was evaluated. The results showed that Movidea performance did not vary with the operator, and the tracking was also stable in home-video recordings. Even if the setup allowed for a two-dimensional analysis, most of the informative content of the movement was maintained. The reliability of the measures and features extracted, as well as the easiness of use, may boost the uptake of the proposed solution in clinical settings. Movidea overcomes the current limitation in the clinical practice in early detection of neurodevelopmental disorders by providing objective measures based on reliable data, and adds a new tool for the motor analysis of infants through unobtrusive technology.

Introduction and methods of the evidence-based guidelines for the diagnosis and management of autism spectrum disorder by the Italian National Institute of Health.

BACKGROUND: Autism Spectrum Disorder (ASD) is a neuro-developmental disorder that affects communication and behavior with a prevalence of approximately 1% worldwide. Health outcomes of interventions for ASD are largely Participant Reported Outcomes (PROs). Specific guidelines can help support the best care for people with ASD to optimize these health outcomes but they have to adhere to standards for their development to be trustworthy. OBJECTIVE: The goal of this article is to describe the new methodological standards of the Italian National Institute of Health and novel aspects of this guideline development process. This article will serve as a reference standard for future guideline development in the Italian setting. METHODS: We applied the new standards of the Italian National Institute of Health to the two guidelines on diagnosis and management of children/adolescents and adults with ASD, with a focus on the scoping, panel composition, management of conflict of interest, generation and prioritization of research questions, early stakeholders' involvement, and PROs. Recommendations are based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence-to-Decision frameworks. RESULTS: Following a public application process, the ISS established two multidisciplinary panels including people with ASD and/or their caregivers. Seventy-nine research questions were identified as potentially relevant for the guideline on children and adolescents with ASD and 31 for the one on adults with ASD. Questions deemed to have the highest priority were selected for inclusion in the guidelines. Other stakeholders valued their early involvement in the process which will largely focus on PROs. The panels then successfully piloted the development of recommendations using the methodological standards and process set by the ISS with a focus on PROs. CONCLUSIONS: In this article, we describe the development of practice guidelines that focus on PROs for the diagnosis and management of ASD based on novel methods for question prioritization and stakeholder involvement. The recommendations allow for the adoption or adaptation to international settings.