A brief telehealth parent training for children with autism spectrum disorder and sleep disturbances: A pilot study / Imanol SETIEN-RAMOS ; Teresa ALONZO-CASTILLO ; Aina GARCÍA-MARTÍNEZ ; María José JURADO-LUQUE ; Odile Romero SANTO-TOMÁS ; María MARTÍNEZ-RAMÍREZ ; Josep Antoni RAMOS-QUIROGA ; Laura GISBERT-GUSTEMPS in Research in Autism, 125 (July 2025)  

Public ISBD [article]  inResearch in Autism > 125 (July 2025) . - p.202601 Titre : A brief telehealth parent training for children with autism spectrum disorder and sleep disturbances: A pilot study Type de document : texte imprimé Auteurs : Imanol SETIEN-RAMOS, Auteur ; Teresa ALONZO-CASTILLO, Auteur ; Aina GARCÍA-MARTÍNEZ, Auteur ; María José JURADO-LUQUE, Auteur ; Odile Romero SANTO-TOMÁS, Auteur ; María MARTÍNEZ-RAMÍREZ, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur ; Laura GISBERT-GUSTEMPS, Auteur Article en page(s) : p.202601 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Sleep  Pre-school children  School-age children  Interventions - psychosocial/behavioral  Telehealth Index. décimale : PER Périodiques Résumé : Background Parent-mediated telehealth interventions have demonstrated effectiveness in managing sleep disturbances in children with Autism Spectrum Disorder (ASD). Objectives This study aims to evaluate the preliminary feasibility, acceptability, and efficacy of a brief telehealth parent training program designed for children with ASD experiencing sleep disturbances. Methods This open-label trial involved 50 children aged 3 to 12 years with ASD and sleep issues. Participants underwent a four-session group telehealth parent training program targeting sleep disturbances, chronotype regulation, behavioral difficulties, and parent quality of life. A follow-up phone session was conducted one month after the intervention. Results Post-intervention analysis revealed a significant improvement in the parent-reported sleep questionnaire for children with ASD (Cohen's d = 0.64). Sleep logs indicated a statistically significant enhancement in sleep efficiency (Cohen's d = 0.52). The parent-reported chronotype questionnaire showed significant changes at the one-month follow-up (Cohen's d = 0.48). No significant differences were observed regarding behavioral difficulties. Improvements in parent-reported health-related quality of life were noted (Cohen's d = 0.79 post-intervention; Cohen's d = 1.15 at one-month follow-up). Treatment fidelity was high, and participant satisfaction was elevated, reflecting perceived effectiveness and favorable cost-benefit ratio. Conclusions The brief telehealth parent training intervention demonstrates potential in improving sleep issues and regulating chronotype in children with ASD, with promising results in terms of feasibility, acceptability, and preliminary efficacy. En ligne : https://doi.org/10.1016/j.reia.2025.202601 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=559 [article] A brief telehealth parent training for children with autism spectrum disorder and sleep disturbances: A pilot study [texte imprimé] / Imanol SETIEN-RAMOS, Auteur ; Teresa ALONZO-CASTILLO, Auteur ; Aina GARCÍA-MARTÍNEZ, Auteur ; María José JURADO-LUQUE, Auteur ; Odile Romero SANTO-TOMÁS, Auteur ; María MARTÍNEZ-RAMÍREZ, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur ; Laura GISBERT-GUSTEMPS, Auteur . - p.202601. Langues : Anglais (eng) in Research in Autism > 125 (July 2025) . - p.202601 Mots-clés : Autism spectrum disorder  Sleep  Pre-school children  School-age children  Interventions - psychosocial/behavioral  Telehealth Index. décimale : PER Périodiques Résumé : Background Parent-mediated telehealth interventions have demonstrated effectiveness in managing sleep disturbances in children with Autism Spectrum Disorder (ASD). Objectives This study aims to evaluate the preliminary feasibility, acceptability, and efficacy of a brief telehealth parent training program designed for children with ASD experiencing sleep disturbances. Methods This open-label trial involved 50 children aged 3 to 12 years with ASD and sleep issues. Participants underwent a four-session group telehealth parent training program targeting sleep disturbances, chronotype regulation, behavioral difficulties, and parent quality of life. A follow-up phone session was conducted one month after the intervention. Results Post-intervention analysis revealed a significant improvement in the parent-reported sleep questionnaire for children with ASD (Cohen's d = 0.64). Sleep logs indicated a statistically significant enhancement in sleep efficiency (Cohen's d = 0.52). The parent-reported chronotype questionnaire showed significant changes at the one-month follow-up (Cohen's d = 0.48). No significant differences were observed regarding behavioral difficulties. Improvements in parent-reported health-related quality of life were noted (Cohen's d = 0.79 post-intervention; Cohen's d = 1.15 at one-month follow-up). Treatment fidelity was high, and participant satisfaction was elevated, reflecting perceived effectiveness and favorable cost-benefit ratio. Conclusions The brief telehealth parent training intervention demonstrates potential in improving sleep issues and regulating chronotype in children with ASD, with promising results in terms of feasibility, acceptability, and preliminary efficacy. En ligne : https://doi.org/10.1016/j.reia.2025.202601 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=559

COVID-19 pandemic effects in people with Autism Spectrum Disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status / Jorge LUGO-MARÍN in Research in Autism Spectrum Disorders, 83 (May 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 83 (May 2021) . - 101757 Titre : COVID-19 pandemic effects in people with Autism Spectrum Disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status Type de document : texte imprimé Auteurs : Jorge LUGO-MARÍN, Auteur ; Laura GISBERT-GUSTEMPS, Auteur ; Imanol SETIEN-RAMOS, Auteur ; Gemma ESPAÑOL-MARTIN, Auteur ; Pol IBAÑEZ-JIMENEZ, Auteur ; Mireia FORNER-PUNTONET, Auteur ; Gara ARTEAGA-HENRIQUEZ, Auteur ; Albert SORIANO-DIA, Auteur ; Juan David DUQUE-YEMAIL, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur Article en page(s) : 101757 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  COVID-19  Mental health  Caregivers  Pre-post design  Survey Index. décimale : PER Périodiques Résumé : Among the difficulties associated with Autism Spectrum Disorder (ASD) are those related to adaptation to changes and new situations, as well as anxious-depressive symptoms frequently related to excessive environmental requirements. The main objective of this research is to study the psychological impact of the lockdown due to the social emergency situation (COVID-19) in children/adolescents and adults diagnosed with ASD. Participants were 37 caregivers of children/adolescents with ASD, also 35 ASD adults and 32 informants. Evaluation was conducted through a web survey system and included standardized clinical questionnaires (CBCL and SCL-90-R), which were compared with results before lockdown start, and a brief self-reported survey addressing the subjective perception of changes in daily functioning areas. The results revealed a reduction of psychopathological symptoms in both age groups, but only reaching statistical significance in the adult group, except for Somatization, Anxiety, and Obsessive-Compulsive domains. ASD severity Level 2 showed greater improvement after lockdown onset in the children/adolescent group when compared to ASD Level 1 participants. Younger adults (18–25 yoa) reported greater improvement than older adults (=>25 yoa). Survey results indicate an improvement of feeding quality and a reduction in the number of social initiations during the lockdown. Adult ASD participants perceived a decrease in stress levels after the lockdown onset, whereas caregivers reported higher stress levels at the same point in both age groups. Limitations included the small number of participants and a heterogeneous evaluation window between measures. Pyschopathological status after two months of social distancing and lockdown seems to improve in ASD young adult population. En ligne : https://doi.org/10.1016/j.rasd.2021.101757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=446 [article] COVID-19 pandemic effects in people with Autism Spectrum Disorder and their caregivers: Evaluation of social distancing and lockdown impact on mental health and general status [texte imprimé] / Jorge LUGO-MARÍN, Auteur ; Laura GISBERT-GUSTEMPS, Auteur ; Imanol SETIEN-RAMOS, Auteur ; Gemma ESPAÑOL-MARTIN, Auteur ; Pol IBAÑEZ-JIMENEZ, Auteur ; Mireia FORNER-PUNTONET, Auteur ; Gara ARTEAGA-HENRIQUEZ, Auteur ; Albert SORIANO-DIA, Auteur ; Juan David DUQUE-YEMAIL, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur . - 101757. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 83 (May 2021) . - 101757 Mots-clés : Autism Spectrum Disorder  COVID-19  Mental health  Caregivers  Pre-post design  Survey Index. décimale : PER Périodiques Résumé : Among the difficulties associated with Autism Spectrum Disorder (ASD) are those related to adaptation to changes and new situations, as well as anxious-depressive symptoms frequently related to excessive environmental requirements. The main objective of this research is to study the psychological impact of the lockdown due to the social emergency situation (COVID-19) in children/adolescents and adults diagnosed with ASD. Participants were 37 caregivers of children/adolescents with ASD, also 35 ASD adults and 32 informants. Evaluation was conducted through a web survey system and included standardized clinical questionnaires (CBCL and SCL-90-R), which were compared with results before lockdown start, and a brief self-reported survey addressing the subjective perception of changes in daily functioning areas. The results revealed a reduction of psychopathological symptoms in both age groups, but only reaching statistical significance in the adult group, except for Somatization, Anxiety, and Obsessive-Compulsive domains. ASD severity Level 2 showed greater improvement after lockdown onset in the children/adolescent group when compared to ASD Level 1 participants. Younger adults (18–25 yoa) reported greater improvement than older adults (=>25 yoa). Survey results indicate an improvement of feeding quality and a reduction in the number of social initiations during the lockdown. Adult ASD participants perceived a decrease in stress levels after the lockdown onset, whereas caregivers reported higher stress levels at the same point in both age groups. Limitations included the small number of participants and a heterogeneous evaluation window between measures. Pyschopathological status after two months of social distancing and lockdown seems to improve in ASD young adult population. En ligne : https://doi.org/10.1016/j.rasd.2021.101757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=446

Eye-Tracking Studies in Adults with Autism Spectrum Disorder: A Systematic Review and Meta-analysis / Imanol SETIEN-RAMOS ; Jorge LUGO-MARÍN ; Laura GISBERT-GUSTEMPS ; Emiliano DÍEZ-VILLORIA ; María MAGÁN-MAGANTO ; Ricardo CANAL-BEDIA ; Josep Antoni RAMOS-QUIROGA in Journal of Autism and Developmental Disorders, 53-6 (June 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-6 (June 2023) . - p.2430-2443 Titre : Eye-Tracking Studies in Adults with Autism Spectrum Disorder: A Systematic Review and Meta-analysis : Journal of Autism and Developmental Disorders Type de document : texte imprimé Auteurs : Imanol SETIEN-RAMOS, Auteur ; Jorge LUGO-MARÍN, Auteur ; Laura GISBERT-GUSTEMPS, Auteur ; Emiliano DÍEZ-VILLORIA, Auteur ; María MAGÁN-MAGANTO, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur Article en page(s) : p.2430-2443 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Eye-tracking studies have shown potential in effectively discriminating between autism spectrum disorder (ASD) and non-ASD groups. The main objective of the present study was to conduct a systematic review and meta-analysis of eye-tracking studies in adults with ASD. A total of 22 studies were included for meta-analysis. Eyes and Non-Social regions proved better for discriminating between ASD and non-ASD adults, while fixation duration seems to be the outcome to choose. Active engaged tasks seem to reduce differences between ASD and non-ASD adults, regardless of the emotional content of the stimuli/task. Proportional fixation duration on eyes and non-social areas in non-active tasks (e.g. free viewing) seems to be the best eye-tracking design for increasing the sensitivity and specificity in ASD adults. En ligne : https://doi.org/10.1007/s10803-022-05524-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=506 [article] Eye-Tracking Studies in Adults with Autism Spectrum Disorder: A Systematic Review and Meta-analysis : Journal of Autism and Developmental Disorders [texte imprimé] / Imanol SETIEN-RAMOS, Auteur ; Jorge LUGO-MARÍN, Auteur ; Laura GISBERT-GUSTEMPS, Auteur ; Emiliano DÍEZ-VILLORIA, Auteur ; María MAGÁN-MAGANTO, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur . - p.2430-2443. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-6 (June 2023) . - p.2430-2443 Index. décimale : PER Périodiques Résumé : Eye-tracking studies have shown potential in effectively discriminating between autism spectrum disorder (ASD) and non-ASD groups. The main objective of the present study was to conduct a systematic review and meta-analysis of eye-tracking studies in adults with ASD. A total of 22 studies were included for meta-analysis. Eyes and Non-Social regions proved better for discriminating between ASD and non-ASD adults, while fixation duration seems to be the outcome to choose. Active engaged tasks seem to reduce differences between ASD and non-ASD adults, regardless of the emotional content of the stimuli/task. Proportional fixation duration on eyes and non-social areas in non-active tasks (e.g. free viewing) seems to be the best eye-tracking design for increasing the sensitivity and specificity in ASD adults. En ligne : https://doi.org/10.1007/s10803-022-05524-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=506

Feasibility and preliminary outcomes of a parent-mediated telehealth intervention for feeding difficulties in children with autism spectrum disorder / Jorge LUGO-MARÍN in Research in Autism, 136 (August 2026)  

Public ISBD [article]  inResearch in Autism > 136 (August 2026) . - 202947 Titre : Feasibility and preliminary outcomes of a parent-mediated telehealth intervention for feeding difficulties in children with autism spectrum disorder Type de document : texte imprimé Auteurs : Jorge LUGO-MARÍN, Auteur ; Imanol SETIEN-RAMOS, Auteur ; Teresa ALONZO-CASTILLO, Auteur ; Aina GARCÍA-MARTÍNEZ, Auteur ; Silvia FERRER-MOLTÓ, Auteur ; María MARTÍNEZ-RAMÍREZ, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur ; Laura GISBERT-GUSTEMPS, Auteur Article en page(s) : 202947 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Feeding difficulties  Food selectivity  Telehealth  Parent-mediated intervention  Applied behavior analysis Index. décimale : PER Périodiques Résumé : Introduction Feeding difficulties are highly prevalent in children with autism spectrum disorder (ASD) and represent a significant source of family stress. Although in-person behavioral interventions have demonstrated effectiveness, access to them is limited. Parent-mediated interventions delivered via telehealth are emerging as a promising alternative, although evidence remains scarce. Objective To evaluate the feasibility, acceptability, and preliminary efficacy of a parent-mediated behavioral intervention delivered via telehealth for feeding difficulties in children with ASD. Method A prospective single-arm pilot study with a pre–post design and follow-ups at 3, 6, and 12 months was conducted. Participants were 26 children with ASD, aged 3–8 years, with clinically significant feeding difficulties. The 8-week intervention was based on applied behavior analysis principles and included psychoeducation, training in behavioral strategies, and individualized follow-up via videoconference. Measures included parental adherence, parental satisfaction, feeding behaviors, variety of accepted foods, parental stress, and family quality of life. Results The intervention showed moderate-to-high levels of parental adherence. Families reported high satisfaction and good acceptability of the telehealth format. Significant reductions in food selectivity were observed, along with a progressive increase in the variety of accepted foods, particularly at 6 months. No significant changes were found in parental stress or family quality of life. Conclusions This pilot study supports the feasibility and acceptability of a parent-mediated behavioral feeding intervention delivered via telehealth, with preliminary positive effects on food selectivity. Controlled trials are needed to confirm these findings. En ligne : https://doi.org/10.1016/j.reia.2026.202947 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Feasibility and preliminary outcomes of a parent-mediated telehealth intervention for feeding difficulties in children with autism spectrum disorder [texte imprimé] / Jorge LUGO-MARÍN, Auteur ; Imanol SETIEN-RAMOS, Auteur ; Teresa ALONZO-CASTILLO, Auteur ; Aina GARCÍA-MARTÍNEZ, Auteur ; Silvia FERRER-MOLTÓ, Auteur ; María MARTÍNEZ-RAMÍREZ, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur ; Laura GISBERT-GUSTEMPS, Auteur . - 202947. Langues : Anglais (eng) in Research in Autism > 136 (August 2026) . - 202947 Mots-clés : Autism spectrum disorder  Feeding difficulties  Food selectivity  Telehealth  Parent-mediated intervention  Applied behavior analysis Index. décimale : PER Périodiques Résumé : Introduction Feeding difficulties are highly prevalent in children with autism spectrum disorder (ASD) and represent a significant source of family stress. Although in-person behavioral interventions have demonstrated effectiveness, access to them is limited. Parent-mediated interventions delivered via telehealth are emerging as a promising alternative, although evidence remains scarce. Objective To evaluate the feasibility, acceptability, and preliminary efficacy of a parent-mediated behavioral intervention delivered via telehealth for feeding difficulties in children with ASD. Method A prospective single-arm pilot study with a pre–post design and follow-ups at 3, 6, and 12 months was conducted. Participants were 26 children with ASD, aged 3–8 years, with clinically significant feeding difficulties. The 8-week intervention was based on applied behavior analysis principles and included psychoeducation, training in behavioral strategies, and individualized follow-up via videoconference. Measures included parental adherence, parental satisfaction, feeding behaviors, variety of accepted foods, parental stress, and family quality of life. Results The intervention showed moderate-to-high levels of parental adherence. Families reported high satisfaction and good acceptability of the telehealth format. Significant reductions in food selectivity were observed, along with a progressive increase in the variety of accepted foods, particularly at 6 months. No significant changes were found in parental stress or family quality of life. Conclusions This pilot study supports the feasibility and acceptability of a parent-mediated behavioral feeding intervention delivered via telehealth, with preliminary positive effects on food selectivity. Controlled trials are needed to confirm these findings. En ligne : https://doi.org/10.1016/j.reia.2026.202947 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Research Priorities in Autism From a Clinical Setting: Voices of Autistic Adults and Families of Children and Adolescents With Autism Spectrum Disorder / Laura GISBERT-GUSTEMPS in Autism, 30-11 (November 2026)  

Public ISBD [article]  inAutism > 30-11 (November 2026) . - p.2873-2889 Titre : Research Priorities in Autism From a Clinical Setting: Voices of Autistic Adults and Families of Children and Adolescents With Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Laura GISBERT-GUSTEMPS, Auteur ; María MARTÍNEZ-RAMÍREZ, Auteur ; Imanol SETIEN-RAMOS, Auteur ; Damián RESTOY, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur ; Jorge LUGO-MARÍN, Auteur Article en page(s) : p.2873-2889 Langues : Anglais (eng) Mots-clés : autism  research priorities  thematic analysis  clinical  interview  survey Index. décimale : PER Périodiques Résumé : This study explored the research priorities of autistic adults and families of children and adolescents with autism spectrum disorder within a hospital-based diagnostic service in Spain. Using a mixed-methods design with interviews and a survey aligned with the Spanish Autism Strategic Plan (2023–2027), 42 participants shared what research they consider most relevant. Both groups prioritized applied research that improves daily life—communication, sensory processing, flexibility, mental health, education, employment, and quality of life. Families also emphasized biomedical topics such as genetics, microbiota, and pharmacological treatments, noting that etiological research should enhance well-being rather than aim to “cure” autism. Autistic adults highlighted the need for more accurate and timely diagnosis, especially for women and late-diagnosed adults, as well as research on masking, autonomy, workplace adaptations, and independent living. Participants perceived limited real-world impact from current autism research due to poor dissemination and scarce practical application, yet interest in future involvement was high, with many willing to collaborate or act as co-researchers. The study shows that participatory research can be successfully embedded in clinical settings and underscores the need for a national research agenda grounded in lived experience and focused on improving everyday well-being.Lay Abstract This study aimed to identify which research topics are most important to autistic adults and to families of children and adolescents with autism spectrum disorder in Spain. Participants were also asked for their views on publicly funded autism research projects from 2020 to 2023 in order to assess whether funding priorities align with what they consider most relevant. A total of 42 people took part (23 family members and 19 autistic adults), all invited through a hospital-based autism diagnostic program in Barcelona. Data were collected through interviews and a survey based on the Spanish Strategic Plan for Autism (2023–2027). Both families and autistic adults agreed that the most useful research is that which improves daily life, particularly in areas such as communication, flexibility, sensory processing, education, employment, mental health, and quality of life. Studies on the causes or genetics of autism were also seen as relevant, provided their goal is to improve the quality of life of autistic people and their families, rather than the eradication of autism. Families placed greater importance on professional training and good health care practices, whereas autistic adults emphasized the need for research on independence, aging, and sensory experiences. Nearly all participants had previously taken part in research and showed strong interest in continuing to do so. Many autistic adults expressed a desire to participate not only as subjects but also as collaborators or co-researchers. This study demonstrates that participatory research can be conducted within a clinical setting, integrating the voices of autistic people and their families into the health care system itself. This approach helps build a more inclusive, respectful, and practically useful autism science. En ligne : https://dx.doi.org/10.1177/13623613261483298 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=595 [article] Research Priorities in Autism From a Clinical Setting: Voices of Autistic Adults and Families of Children and Adolescents With Autism Spectrum Disorder [texte imprimé] / Laura GISBERT-GUSTEMPS, Auteur ; María MARTÍNEZ-RAMÍREZ, Auteur ; Imanol SETIEN-RAMOS, Auteur ; Damián RESTOY, Auteur ; Josep Antoni RAMOS-QUIROGA, Auteur ; Jorge LUGO-MARÍN, Auteur . - p.2873-2889. Langues : Anglais (eng) in Autism > 30-11 (November 2026) . - p.2873-2889 Mots-clés : autism  research priorities  thematic analysis  clinical  interview  survey Index. décimale : PER Périodiques Résumé : This study explored the research priorities of autistic adults and families of children and adolescents with autism spectrum disorder within a hospital-based diagnostic service in Spain. Using a mixed-methods design with interviews and a survey aligned with the Spanish Autism Strategic Plan (2023–2027), 42 participants shared what research they consider most relevant. Both groups prioritized applied research that improves daily life—communication, sensory processing, flexibility, mental health, education, employment, and quality of life. Families also emphasized biomedical topics such as genetics, microbiota, and pharmacological treatments, noting that etiological research should enhance well-being rather than aim to “cure” autism. Autistic adults highlighted the need for more accurate and timely diagnosis, especially for women and late-diagnosed adults, as well as research on masking, autonomy, workplace adaptations, and independent living. Participants perceived limited real-world impact from current autism research due to poor dissemination and scarce practical application, yet interest in future involvement was high, with many willing to collaborate or act as co-researchers. The study shows that participatory research can be successfully embedded in clinical settings and underscores the need for a national research agenda grounded in lived experience and focused on improving everyday well-being.Lay Abstract This study aimed to identify which research topics are most important to autistic adults and to families of children and adolescents with autism spectrum disorder in Spain. Participants were also asked for their views on publicly funded autism research projects from 2020 to 2023 in order to assess whether funding priorities align with what they consider most relevant. A total of 42 people took part (23 family members and 19 autistic adults), all invited through a hospital-based autism diagnostic program in Barcelona. Data were collected through interviews and a survey based on the Spanish Strategic Plan for Autism (2023–2027). Both families and autistic adults agreed that the most useful research is that which improves daily life, particularly in areas such as communication, flexibility, sensory processing, education, employment, mental health, and quality of life. Studies on the causes or genetics of autism were also seen as relevant, provided their goal is to improve the quality of life of autistic people and their families, rather than the eradication of autism. Families placed greater importance on professional training and good health care practices, whereas autistic adults emphasized the need for research on independence, aging, and sensory experiences. Nearly all participants had previously taken part in research and showed strong interest in continuing to do so. Many autistic adults expressed a desire to participate not only as subjects but also as collaborators or co-researchers. This study demonstrates that participatory research can be conducted within a clinical setting, integrating the voices of autistic people and their families into the health care system itself. This approach helps build a more inclusive, respectful, and practically useful autism science. En ligne : https://dx.doi.org/10.1177/13623613261483298 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=595

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