Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda / Jonathan VINCENT in Autism, 30-6 (June 2026)  

Public ISBD [article]  inAutism > 30-6 (June 2026) . - p.1430-1442 Titre : Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda Type de document : texte imprimé Auteurs : Jonathan VINCENT, Auteur ; Diana KAJJUMBA, Auteur ; Richard AMONE, Auteur ; Edward John ESTLIN, Auteur ; Kennedy Kosko OKELLO, Auteur ; Franceska AKELLO, Auteur ; James OKELLO, Auteur ; Richard IDRO, Auteur ; Catherine ABBO, Auteur ; Simple OUMA, Auteur Article en page(s) : p.1430-1442 Langues : Anglais (eng) Mots-clés : Africa  autism  causes  disability  qualitative research  Uganda Index. décimale : PER Périodiques Résumé : Understanding the causes of autism in sub-Saharan Africa remains limited, contributing to stigma and delayed identification. This multi-site qualitative study examined community explanatory models of autism and related help-seeking practices in Northern Uganda. Data were generated through 25 semi-structured interviews and 4 focus group discussions (N = 64) across 1 urban and 2 rural districts in the Acholi sub-region. Participants included autistic young people, caregivers, health and education professionals, community, cultural and religious leaders, and government representatives. Data were analysed inductively. Four interrelated themes were identified: unknown causes, supernatural explanations, biopsychosocial attributions, and help-seeking pathways. Autism was frequently misunderstood and conflated with ‘mental illness’ or general learning difficulties. Supernatural accounts, such as witchcraft, curses, and divine punishment, were prevalent and often gendered, with mothers disproportionately blamed. Biopsychosocial explanations included contraceptive use, obstetric complications, genetic factors, and post-conflict trauma. These causal beliefs shaped different help-seeking trajectories, typically prioritising religious and traditional interventions before biomedical care. Stigmatising interpretations were linked to social exclusion, neglect, physical abuse, and, in extreme cases, infanticide. Findings highlight the entanglement of cultural, spiritual, and biomedical models in a post-conflict, low-resource context. Interventions addressing misconceptions and maternal blame may reduce stigma, support earlier identification, and prevent avoidable harms.Lay Abstract This study looked at how people in Northern Uganda think about autism and what they believe causes it. Researchers spoke with 25 people through one-on-one interviews and 4 group discussions (with 8–10 people per group for a total of 39 people) in 3 districts of the Acholi region of Uganda, covering both urban and rural areas. The data were transcribed and interpreted to understand what seemed most important across all the participants from the interviews and focus groups. Four main themes were identified: (1) Unknown causes, (2) Supernatural causes, (3) Biopsychosocial causes, and (4) Help-seeking responses. Overall, the study found that autism is often poorly understood. Many participants linked it to supernatural explanations, such as witchcraft or punishment from God. Mothers were often blamed and seen as responsible for their child’s condition. People also pointed to wider influences, including modern medical interventions and the long-term effects of war and displacement, as possible causes. These beliefs led to traditional, religious, and modern medical help-seeking responses. Where families followed traditional responses, this could have serious consequences, including harm or even death for the child. This study highlights the importance of working with communities in culturally respectful ways to better understand their perspectives. This can lead to earlier recognition, reduced stigmatisation, better education, and stronger support. En ligne : https://dx.doi.org/10.1177/13623613261434571 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=586 [article] Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda [texte imprimé] / Jonathan VINCENT, Auteur ; Diana KAJJUMBA, Auteur ; Richard AMONE, Auteur ; Edward John ESTLIN, Auteur ; Kennedy Kosko OKELLO, Auteur ; Franceska AKELLO, Auteur ; James OKELLO, Auteur ; Richard IDRO, Auteur ; Catherine ABBO, Auteur ; Simple OUMA, Auteur . - p.1430-1442. Langues : Anglais (eng) in Autism > 30-6 (June 2026) . - p.1430-1442 Mots-clés : Africa  autism  causes  disability  qualitative research  Uganda Index. décimale : PER Périodiques Résumé : Understanding the causes of autism in sub-Saharan Africa remains limited, contributing to stigma and delayed identification. This multi-site qualitative study examined community explanatory models of autism and related help-seeking practices in Northern Uganda. Data were generated through 25 semi-structured interviews and 4 focus group discussions (N = 64) across 1 urban and 2 rural districts in the Acholi sub-region. Participants included autistic young people, caregivers, health and education professionals, community, cultural and religious leaders, and government representatives. Data were analysed inductively. Four interrelated themes were identified: unknown causes, supernatural explanations, biopsychosocial attributions, and help-seeking pathways. Autism was frequently misunderstood and conflated with ‘mental illness’ or general learning difficulties. Supernatural accounts, such as witchcraft, curses, and divine punishment, were prevalent and often gendered, with mothers disproportionately blamed. Biopsychosocial explanations included contraceptive use, obstetric complications, genetic factors, and post-conflict trauma. These causal beliefs shaped different help-seeking trajectories, typically prioritising religious and traditional interventions before biomedical care. Stigmatising interpretations were linked to social exclusion, neglect, physical abuse, and, in extreme cases, infanticide. Findings highlight the entanglement of cultural, spiritual, and biomedical models in a post-conflict, low-resource context. Interventions addressing misconceptions and maternal blame may reduce stigma, support earlier identification, and prevent avoidable harms.Lay Abstract This study looked at how people in Northern Uganda think about autism and what they believe causes it. Researchers spoke with 25 people through one-on-one interviews and 4 group discussions (with 8–10 people per group for a total of 39 people) in 3 districts of the Acholi region of Uganda, covering both urban and rural areas. The data were transcribed and interpreted to understand what seemed most important across all the participants from the interviews and focus groups. Four main themes were identified: (1) Unknown causes, (2) Supernatural causes, (3) Biopsychosocial causes, and (4) Help-seeking responses. Overall, the study found that autism is often poorly understood. Many participants linked it to supernatural explanations, such as witchcraft or punishment from God. Mothers were often blamed and seen as responsible for their child’s condition. People also pointed to wider influences, including modern medical interventions and the long-term effects of war and displacement, as possible causes. These beliefs led to traditional, religious, and modern medical help-seeking responses. Where families followed traditional responses, this could have serious consequences, including harm or even death for the child. This study highlights the importance of working with communities in culturally respectful ways to better understand their perspectives. This can lead to earlier recognition, reduced stigmatisation, better education, and stronger support. En ligne : https://dx.doi.org/10.1177/13623613261434571 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=586

Prevalence, Distribution, Co-occurring Neurodevelopmental Conditions, and Associated Factors of Autism Among Children in Northern Uganda / Ouma SIMPLE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2366-2380 Titre : Prevalence, Distribution, Co-occurring Neurodevelopmental Conditions, and Associated Factors of Autism Among Children in Northern Uganda Type de document : texte imprimé Auteurs : Ouma SIMPLE, Auteur ; Edward John ESTLIN, Auteur ; Kennedy Kosko OKELLO, Auteur ; Morrish Obol OKELLO, Auteur ; Franceska AKELLO, Auteur ; James OKELLO, Auteur ; Freddy ODONG, Auteur ; Esther SSEBYALA, Auteur ; Richard IDRO, Auteur ; Catherine ABBO, Auteur ; Jonathan VINCENT, Auteur Article en page(s) : p.2366-2380 Langues : Anglais (eng) Mots-clés : autism  neurodevelopmental conditions  prevalence  diagnosis  and Africa Index. décimale : PER Périodiques Résumé : Autism is a neurodevelopmental condition characterized by differences in social interaction, communication and behaviour. Despite a global prevalence of one in 127 individuals, autism remains underdiagnosed in low-resource settings. We examined the epidemiology of autism among children aged 2 to 9 years in Northern Uganda. Using multistage sampling, 1,139 children were screened for neurodevelopmental conditions using the validated 23Q screening tool. Children who screened positive underwent clinical assessment, and suspected cases received specialist assessments according to DSM-5-TR criteria. Descriptive statistics and Firth logistic regression were employed for analysis. The mean age was 5.38 years (SD = 2.07), and 51.0% were male. The prevalence of autism was 10.5 per 1,000 children (95% confidence interval [CI] [6.0, 18.5]), of whom 75.0% had co-occurring neurodevelopmental conditions. Autistic children were more likely to have intellectual disability, epilepsy, learning disabilities, global developmental delay, attention-deficit/hyperactivity disorder, dyslexia, cerebral palsy, hearing impairment and speech delay (p < .0045). After adjusting for gender, family history of autism (adjusted odds ratio [aOR] = 6.95, 95% CI [1.60, 30.23]), teenage motherhood (aOR = 8.30, 95% CI [1.30, 53.12]), breech presentation (aOR = 12.23, 95% CI [1.83, 81.64]), and oxygen resuscitation at birth (aOR = 4.56, 95% CI [1.08, 19.33]) were independent predictors of autism. These findings highlight the need to strengthen early identification and targeted services for autistic children in low-resource settings.Lay Abstract Autism affects how people communicate, interact, and process information, and about one in 127 people worldwide are autistic. In low-resource settings, autism is often under-researched and underdiagnosed. We carried out a study in Northern Uganda to estimate how common autism is among children aged 2 to 9 years, to identify co-occurring neurodevelopmental conditions, and to explore factors that may increase likelihood of autism. We enrolled 1,139 children from diverse communities using a multi-step sampling process. After parental consent, one child per household was screened with the 23Q neurodevelopmental screener. Children with possible conditions received further assessment by trained health care workers, and likely cases were confirmed by specialist clinicians using DSM-5-TR diagnostic criteria. Approximately 1 in 95 children were autistic, and none had previously received a diagnosis of autism. The average age of the children diagnosed with autism was about 5 years, and slightly more than half were boys, and most lived in rural areas. Most autistic children (82%) had at least one additional neurodevelopmental condition, such as intellectual disability, learning delays, or epilepsy. Autism was linked to family history, teenage motherhood, and certain birth complications. Improving maternal care, community awareness, and early diagnosis could better support autistic children in Northern Uganda. En ligne : https://dx.doi.org/10.1177/13623613261468802 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Prevalence, Distribution, Co-occurring Neurodevelopmental Conditions, and Associated Factors of Autism Among Children in Northern Uganda [texte imprimé] / Ouma SIMPLE, Auteur ; Edward John ESTLIN, Auteur ; Kennedy Kosko OKELLO, Auteur ; Morrish Obol OKELLO, Auteur ; Franceska AKELLO, Auteur ; James OKELLO, Auteur ; Freddy ODONG, Auteur ; Esther SSEBYALA, Auteur ; Richard IDRO, Auteur ; Catherine ABBO, Auteur ; Jonathan VINCENT, Auteur . - p.2366-2380. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2366-2380 Mots-clés : autism  neurodevelopmental conditions  prevalence  diagnosis  and Africa Index. décimale : PER Périodiques Résumé : Autism is a neurodevelopmental condition characterized by differences in social interaction, communication and behaviour. Despite a global prevalence of one in 127 individuals, autism remains underdiagnosed in low-resource settings. We examined the epidemiology of autism among children aged 2 to 9 years in Northern Uganda. Using multistage sampling, 1,139 children were screened for neurodevelopmental conditions using the validated 23Q screening tool. Children who screened positive underwent clinical assessment, and suspected cases received specialist assessments according to DSM-5-TR criteria. Descriptive statistics and Firth logistic regression were employed for analysis. The mean age was 5.38 years (SD = 2.07), and 51.0% were male. The prevalence of autism was 10.5 per 1,000 children (95% confidence interval [CI] [6.0, 18.5]), of whom 75.0% had co-occurring neurodevelopmental conditions. Autistic children were more likely to have intellectual disability, epilepsy, learning disabilities, global developmental delay, attention-deficit/hyperactivity disorder, dyslexia, cerebral palsy, hearing impairment and speech delay (p < .0045). After adjusting for gender, family history of autism (adjusted odds ratio [aOR] = 6.95, 95% CI [1.60, 30.23]), teenage motherhood (aOR = 8.30, 95% CI [1.30, 53.12]), breech presentation (aOR = 12.23, 95% CI [1.83, 81.64]), and oxygen resuscitation at birth (aOR = 4.56, 95% CI [1.08, 19.33]) were independent predictors of autism. These findings highlight the need to strengthen early identification and targeted services for autistic children in low-resource settings.Lay Abstract Autism affects how people communicate, interact, and process information, and about one in 127 people worldwide are autistic. In low-resource settings, autism is often under-researched and underdiagnosed. We carried out a study in Northern Uganda to estimate how common autism is among children aged 2 to 9 years, to identify co-occurring neurodevelopmental conditions, and to explore factors that may increase likelihood of autism. We enrolled 1,139 children from diverse communities using a multi-step sampling process. After parental consent, one child per household was screened with the 23Q neurodevelopmental screener. Children with possible conditions received further assessment by trained health care workers, and likely cases were confirmed by specialist clinicians using DSM-5-TR diagnostic criteria. Approximately 1 in 95 children were autistic, and none had previously received a diagnosis of autism. The average age of the children diagnosed with autism was about 5 years, and slightly more than half were boys, and most lived in rural areas. Most autistic children (82%) had at least one additional neurodevelopmental condition, such as intellectual disability, learning delays, or epilepsy. Autism was linked to family history, teenage motherhood, and certain birth complications. Improving maternal care, community awareness, and early diagnosis could better support autistic children in Northern Uganda. En ligne : https://dx.doi.org/10.1177/13623613261468802 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

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