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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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision., (Copyright © 2024 Micai, Fulceri, Salvitti, Romano and Scattoni.)

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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Micai, Fulceri, Salvitti, Romano, Poustka, Diehm, Iskrov, Stefanov, Guillon, Rogé, Staines, Sweeney, Boilson, Leósdóttir, Saemundsen, Moilanen, Ebeling, Yliherva, Gissler, Parviainen, Tani, Kawa, Pisula, Vicente, Rasga, Budişteanu, Dale, Povey, Flores, Jenaro, Monroy, Primo, Charman, Cramer, Warberg, Canal-Bedia, Posada, Schendel and Scattoni.)

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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Micai, Ciaramella, Salvitti, Fulceri, Fatta, Poustka, Diehm, Iskrov, Stefanov, Guillon, Rogé, Staines, Sweeney, Boilson, Leósdóttir, Saemundsen, Moilanen, Ebeling, Yliherva, Gissler, Parviainen, Tani, Kawa, Vicente, Rasga, Budişteanu, Dale, Povey, Flores, Jenaro, Monroy, Primo, Charman, Cramer, Warberg, Canal-Bedia, Posada, Scattoni and Schendel.)