Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda

Abstract

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.

Keywords

Africa autism causes disability qualitative research Uganda

Background

Autism is a lifelong, complex neurodevelopmental condition characterised by challenges in social communication and interaction, alongside restricted and repetitive patterns of behaviour, with onset typically occurring within the first 3 years of life (APA, 2013). The clinical presentation of autism is highly heterogeneous and encompasses a wide range of cognitive and adaptive abilities. Although there is a burgeoning body of exemplary autism research across the Global South (Abubakar et al., 2016; Gona et al., 2015; Rahman et al., 2016), the current knowledge base remains largely shaped by evidence and perspectives from high-income countries in the Global North, particularly North America, Europe, and Australasia (Elsabbagh et al., 2012; Nedungadi et al., 2024; Zakirova-Engstrand & Yakubova, 2024). This imbalance persists despite the fact that the majority of autistic individuals reside in low- and middle-income countries (de Vries, 2016; Guler et al., 2018). The paucity of autism-related studies in low-resource nations, such as Uganda, presents significant barriers to timely identification of autism and inequalities across the lifespan in accessing high-quality educational, healthcare, and social services (Bonney et al., 2022; Durkin et al., 2015; Kakooza-Mwesige et al., 2022). Even more concerningly, the lack of evidence allows for the proliferation of misconceptions and misinformation about the causes of autism, which can ultimately lead to fatal outcomes for autistic children and young people, signalled by Eze’s (2018) call for ‘life-saving awareness’.

The World Health Organization (2023) estimates global autism prevalence to be around 1 in 100. In Sub-Saharan Africa, the limited research on autism makes accurate prevalence estimates challenging (Abubakar et al., 2016; Aderinto et al., 2023), although some estimates suggest that the number of children with developmental disabilities, including autism, in the region has increased by 71% over the past 25 years (Global Research on Developmental Disabilities Collaborators, 2018). More recent studies have suggested that the proportion of children presenting with clinical impairments in social communication has increased substantially (Abubakar et al., 2016; Bonney et al., 2022; Durkin et al., 2015; Franz et al., 2017). In Uganda, one of the few published prevalence studies by Kakooza-Mwesige et al. (2014) reports autism in 1.2–1.3 per 100 children aged 2–9 years in a sample from areas in or around the capital Kampala and a more recent study in Northern Uganda indicates a rate of 1 per 100 among the same age range (Ouma et al., under review). Generally, however, in rural regions, such as Northern Uganda, prevalence data are scarce and clinical understanding of autism remains limited. Such factors can lead to delayed identification of autism and, where this does occur, significantly disadvantages girls and women who often receive later diagnoses compared to their male counterparts (Bonney et al., 2022).

The causes of autism are contested although there appears to be some consensus that it results from an interplay between environmental and genetic factors (Dias & Walsh, 2020; Hallmayer et al., 2011; Iakoucheva et al., 2019). Based on a population-based birth cohort of 1074 mother–infant pairs (including 10 pairs of twins), Pham et al. (2022) identify a range of environmental factors associated with autism including greater socioeconomic disadvantage and lone parental status. Some studies report associations with prenatal and perinatal factors including prenatal stress (Manzari et al., 2019; Ouma et al., under review; Pham et al., 2022). In the context of Uganda, factors including gestational diabetes, maternal infections and drug use during pregnancy, caesarean delivery, preterm delivery, post-term delivery, low Apgar score, and small for gestational age have been identified (Arinda et al., 2021). Postnatal factors, such as elevated maternal depression, are associated with autism (Scherer et al., 2019), although other studies dispute this relationship (Li et al., 2009). According to some reports, factors such as medications, chemical exposures, parental age, nutrition, and prenatal environment can account for up to 40%–50% of the variation in autism heritability (Modabbernia et al., 2017). Autism traits, however, may also be influenced by the interplay of genetic factors (Santos et al., 2022; Tordjman et al., 2014). While estimates of heritability have varied substantially over the years, largely due to the clinical heterogeneity of autism (Arenella et al., 2022), there is evidence that suggests that where parents or siblings are autistic, heritability is high, with some monozygotic twin studies revealing a rate of 60%–90% (Veenstra-VanderWeele & Cook, 2004). In their scoping review of 40 genetic studies on autism in Africa (with the majority conducted in Egypt and South Africa), Hakizimana et al. (2024) reveal that numerous genetic variations may play a role in the genetic basis of autism in the African population although results remain inconclusive due to limited samples.

In African contexts, theories of autism and disability extend beyond biomedical frameworks to include sociocultural, spiritual, and moral interpretations, reflecting pluralistic belief systems of health and illness (Gona et al., 2015). Disability is often attributed to intersecting biomedical, social, and metaphysical causes, such as witchcraft or divine punishment (Abubakar et al., 2016; Guler et al., 2018; Kakooza-Mwesige et al., 2014). These models shape stigma and care-seeking, reinforcing narrow perceptions and social exclusion (Bakare & Munir, 2011).

A growing body of qualitative research has examined sociocultural attitudes towards autism and other developmental disabilities in Sub-Saharan Africa, offering important insights into how autism is understood and responded to within diverse community contexts. Much of this literature has centred on caregiving experiences; for example, Oti-Boadi et al.’s (2020) study in Ghana among ageing parents or siblings of autistic young people (Oti-Boadi et al., 2025) highlight the emotional, social, and practical burdens associated with long-term care in settings with limited formal support. Other studies have foregrounded the perspectives of community stakeholders and professionals, including research from Kenya that explores structural and institutional challenges in the education of autistic children (Abubakar et al., 2022). Notably, Gona et al. (2015) documented how parents and professionals in Kenya draw on both preternatural and biomedical explanatory models of autism, shaping different treatment pathways. Comparable patterns have been anecdotally reported in Uganda, where families often interpret autism through culturally embedded frameworks involving divine punishment, spiritual possession, or the transgression of social norms (Eze, 2018). Despite these contributions, the literature has largely prioritised the voices of parents and professionals, with autistic young people themselves rarely included. Studies of health professionals in Uganda further illustrate this imbalance, revealing limited knowledge and divergent beliefs about autism etiology, including attributions to poor nutrition, birth injuries, or inadequate antenatal care (Kasujja et al., 2024; Namuli et al., 2020). Such contested understandings may perpetuate stigma, delay diagnosis, and constrain access to early intervention and appropriate support services (Gona et al., 2015; Karaca & Konuk Şener, 2019; Ruparelia et al., 2016).

The current study is part of a wider project, AJOLI, which has sought to uncover the prevalence and distribution of autism and attitudes towards the condition in Northern Uganda (Ouma et al., under review). Our aim here was to specifically elicit community perspectives with respect to the causes of autism and the practical implications of these. As such, it provides a significant contribution to the field by analysing qualitative accounts from a large and diverse range of stakeholders, including young autistic individuals, community leaders, and health and education professionals in northern Uganda. Moreover, it speaks to the growing imperative to expand the dominant research frame to include indigenous and Global Majority voices in the discourse (Bruno et al., 2025) and offer vital insights which could lead to culturally sensitive approaches to identification, diagnosis, support, and care, and the possibility for improved outcomes for autistic individuals in the region.1

Methodology

Research Design

An explanatory, multi-site qualitative research design was employed. This methodological approach is consistent with Guler et al.’s (2018) recommendation, derived from qualitative research in South Africa, to examine autism within its broader sociocultural context. Taking an interpretivist stance, the study sought to elicit nuanced insights into stakeholders’ perceptions of autism and its causes across one urban and two rural districts in the Acholi sub-region of Northern Uganda. The urban district was selected to represent a metropolitan setting, while the two rural districts were included to capture perspectives from predominantly provincial contexts. For context, Uganda has one of the youngest populations in the world, with 55% of people less than 18 years and one in 5 of primary school age (6–12 years) (United Nations Population Fund [UNFPA], 2018). Despite significant progress, it is still considered to be a low-resource nation with 85% of Uganda’s most disadvantaged residing in the Northern and Eastern regions (Irani et al., 2019). One factor for such stark disparities relates to the civil war between the Lord’s Resistance Army (LRA) and the current government, which lasted from 1987 to 2006. During this period, over half of the population in Northern Uganda were internally displaced and many were subjected to violence and significant trauma (Irani et al., 2019).

Community Engagement

Our project was initiated by a community-based organisation in Uganda and so from the outset our engagement was underpinned by meaningful consultations designed to develop a contextualised understanding of the districts, their sociocultural norms and practices, and local power dynamics (Hoekstra et al., 2018). In order to make the research meaningful, we engaged with communities through the dissemination of findings via a regional radio station and the co-production of accessible resources, including short videos and an easy-read report.

Positionality Statement

Although it was not possible to involve Ugandan autistic adults as advisors to the study, the research team brought relevant experiential knowledge, with two members – one based in Uganda and one in the United Kingdom – having direct family experience of autism. Moreover, all but two members of the team were Ugandan and based in the Acholi region and six of the authors were trained medical professionals with experience of autism. These positionalities were explicitly acknowledged and informed a reflexive analytic approach throughout the research process. This was achieved by engaging in robust online discussions about the collection and interpretation of the data, their situated meaning, and the implications these might have for practice.

Participants

In total, 64 participants make up the sample with 36 females and 28 males, with the majority coming from a more densely populated urban district (see Tables 1 and 2). Purposive sampling was employed to capture diverse perspectives, including parents of autistic children, special needs teachers, health professionals, cultural, religious, and community leaders, government officials, and autistic young people aged 8–17 years. Only verbally communicative autistic participants were included. In the Ugandan health system, diagnostic services for autism remain limited, resulting in identification being skewed towards children with more pronounced traits or co-occurring neurodevelopmental conditions, while less complex presentations of autism are frequently under-recognised (Durkin et al., 2015; Franz et al., 2017). Consequently, the sample of autistic participants represented in this study reflects prevailing clinical and structural constraints in service provision rather than the full heterogeneity of the autism spectrum. There was an over-representation from the urban district, explained by the fact that some participants, originally from rural areas, had either travelled or moved to the urban district to access education and services for their autistic child.

Table 1.

Interview Participants.

Participant	Context	No. of interview	Gender
National level
Representative	Ministry of Education and Sports	1	Female
Representative	Ministry Of Health	1	Male
Urban district
Autistic young person	Primary School	1	Male
Autistic young person	Primary School	1	Female
Parent of autistic child	Primary School	1	Female
Psychiatrist	Urban University	1	Male
Health workers	Health facilities	1	Male
Special needs teachers with experience of autism	Urban schools	5	4 Female and 1 Male
Social worker	Urban district	1	Male
Representative of disabled persons	District council	2	1 Male and 1 Female
Cultural leader	Urban district	1	Male
Religious leader	Christian Church	1	Female
Religious leader	Muslim mosque	1	Male
Community leader	District village	1	Male
Rural district (1)
Parents of autistic children	District village	1	Female
Health workers	District Health facilities	1	Male
Special needs teachers with experience of autism	District Schools	2	Male
Rural district (2)
Health workers	Local health facilities	2	1 Female and 1 Male

Table 2.

Focus Group Participants.

Participant	Context	No. of interview/FGD	Gender
Urban district
Parents of autistic children	Primary school	1	1 Male and 7 Female
Autistic Learners	Primary school	1	4 Male and 3 Female
Rural district (1)
Community Members	District village	1	8 Female and 4 Male
Rural district (2)
Village Health Team (VHT) members	District village	1	7 Female and 5 Male

Data Collection

Data were collected by Authors 2, 3, and 10 through 25 semi-structured interviews as well as 4 focus groups with 39 participants. All data collection was conducted in Acholi to maximise accessibility. Questions focused on participants’ perspectives of autism, its causes, and the practical implications of these. Both interviews and focus groups were conducted face-to-face in local community spaces which were familiar to participants, lasted for approximately an hour, and were audio recorded. The team developed two interview guides, one for adults and another for young autistic people as well as a focus group schedule (Supplementary Materials).

As we sought to ensure that the study included autistic young people, given their relative lack of voice in the literature to date, the team prepared easy-read resources, including information about the project, an accessible assent form, simplified questions, and options to engage in more visual data collection methods such as Draw-Write-Tell (Lewis et al., 2024). While Authors 2, 3, and 10 were experienced in qualitative data collection with both adults and children, Author 1 provided additional training on accessible interview methods among autistic youth. Young people were supported by familiar adults; in interviews, this included both teachers and parents and in the focus groups this was parents/guardians only. Researchers foregrounded their engagement in the focus groups, by sharing topics in advance and ensuring supportive environments where their contributions were listened to and valued. In practice, however, most autistic children found it challenging to express themselves using conventional qualitative approaches but did not make use of the more accessible resources either. This had implications for the volume and richness of the data collected from this group. In particular, while FGDs facilitated shared discussion, they were not always optimal for supporting individual autistic communication preferences. Instances of less extensive verbal data were, therefore, understood as methodological limitations rather than reduced experiential insight.

Ethics

This study complied with Uganda’s Good Clinical Practice and the Responsible Conduct of Research Guidelines (2014) throughout. Ethical approvals were obtained at three levels: from Author 1’s University’s Faculty Research Ethics Committee (FASSLUMS-2024-4483-RECR-3), Author 10’s University Research Ethics Committee (GUREC-2024-907), and the Uganda National Council for Science and Technology (UNCST: HS4564ES). All ethics materials (PIS, consent form, child-friendly assent form) were produced in both Acholi and English and the researchers collecting the data used the language that was most accessible to the participants to explain the study. Each adult participant provided written informed consent, and where a young person took part, their parent/guardian provided consent. Eight autistic young people (age 8–17) and one autistic adult took part and for each of these, assent was confirmed using a visual easy-read resource (Supplementary Materials). All data were handled confidentially and retained on password-protected devices. To mitigate personal data leakage, identifying participant information was held separately. A core ethical concern with discussing neurodevelopmental conditions, including autism, in a low-resource region, such as Northern Uganda, is the risk of increasing stigma for families or giving families false hope with respect to additional community or educational provisions (Okurut & Among, 2019). To understand these concerns, our multidisciplinary team included members of local community-based organisations, as well as parents or family members of autistic young people. And to address them, we co-produced accessible resources to engage in ongoing psychoeducation with families and communities.

Data Analysis

All data were collected in the local dialect, Acholi but translated into English. Authors 2, 3, and 10 are each fluent in both languages and so they first listened back to the audio, initially transcribed this into Acholi, and then translated the text to English. The three authors responsible for data collection worked collaboratively to provide verification on the accuracy of the English-version transcripts. The full transcripts were shared with the full team via a password-protected folder although Authors 1 and 4 led the analysis. Data were analysed inductively using NVivo20 software (QSR International, 2020). The process included reading all the transcripts to generate familiarisation. Based on close reading of a subset of transcripts, initial codes were identified. At a further level of abstraction, these were organised into a preliminary set of themes and subthemes (Saldana, 2021). These, alongside illustrative data, were downloaded as an Excel report from NVivo and shared with the team for review. Once verified through a series of online meetings, a final set of themes were confirmed to inform a final and comprehensive analysis, which was once again reviewed on completion. We were mindful that those leading the analysis were not from Uganda and were not autistic and so we sought to generate trustworthiness through a deliberative process, ensuring as diverse an interpretation as possible and relative consensus across our international research team (Denzin & Lincoln, 1994). While formal participant member-checking could not be undertaken, the research team included representation from a community-based organisation that contributed to data interpretation and provided critical insights reflecting local stakeholder perspectives. A decision was taken not to disaggregate the data per district as building a more comprehensive picture across the region was the aim. However, where relevant, indication of variation or agreement is noted.

Findings

Findings are arranged around the perceived causes of autism and help-seeking responses in the Northern Ugandan region. Table 3 represents the themes and subthemes derived through the analytic process.

Table 3.

Themes.

Causes of autism
Theme	Subtheme
Unknown causes	Lack of awareness
Unknown causes	Unknown cognitive impairment
Supernatural causes	Bewitched by others
	Demon or spiritual omen
	Punishment for wrongdoing
	Parental blame
Biopsychosocial causes	Western contraceptive interventions
	Modern pregnancy guidance / childbirth
	Genetic heritability
	Post-war trauma
Help-seeking responses	Traditional responses
Help-seeking responses	Modern medical provision

Theme 1: Unknown Causes

The first theme derived from our data indicates uncertainty surrounding autism as a neurodevelopmental condition and the view that ‘most of the community members do not know the cause of this kind of condition’ (Teacher_interview). This perception was represented across all stakeholder groups and all three districts. For some, the clinical term autism was completely new, indicating a lack of awareness even for those with significant experience of disability:

It’s the first time I am hearing this term autism. I didn’t know it but when you tried describing the signs and symptoms, I noticed that we have them within our community and they are quite many . . . (Disabled persons representative_interview)

Most of the time we don’t know what has caused this condition. Even ourselves as health workers, we don’t know. (Health worker_interview)

Even without clinical understanding, the characteristics of autism were identifiable within individuals in the communities and purportedly relatively common. What was consistent across the participant groups, which included different levels of expertise and exposure, was that even where there was some understanding of what autism is as a condition, ‘to explain its cause . . . we don’t have any conclusive idea’ (Parents_FGD).

Where autism was unknown, to explain it, community members considered it some other form of ‘mental illness’ (Psychiatrist_interview) or other ‘learning difficulties’ (Disable person representative_interview). Speaking about himself, this autistic young person suggests,

They say ‘we don’t understand him; he has a mental issue’. (Autistic young person_interview)

Evidence suggests here that autism is generalised through a poorly differentiated framework of ‘mental illness’, reflecting the lack of locally accessible knowledge about the condition as distinct from other neurodevelopmental conditions.

Theme 2: Supernatural Causes

Various participants reported associations between autism and spiritual or supernatural influences, many of which are deeply rooted in cultural and religious beliefs. A prevalent theme across the dataset was a relationship between autism and witchcraft or a curse, sometimes as the result of others’ interventions or as divine retribution.

Some indicated how autism was perceived to be the outcome of external forces such as a witchdoctor or jealous co-wife bewitching a family or, particularly, a mother:

People here belief that someone can hold a grudge and through a witchdoctor can cause harm to that person. (Teacher_interview)

I think it’s because of my stepmom’s jealousy. She bewitched me when I was still in the womb. (Autistic young person_FGD)

Examples in this subtheme indicate how when the causes are unknown there is a tendency to look to more traditional explanations, which are often linked to parental blame and passed down to the children themselves which can be internalised as stigmatising explanatory narratives.

Other participants perceived autism to be the result of ‘a curse’, ‘an evil spirit’, ‘demons’, or ‘the result of spiritual bad omen’. In these cases, it was often deemed to be the consequence of parental transgressions, where ‘you could have committed a terrible omen and God has paid you with this child’ (Disabled persons representative_interview). Such explanations align with broader conceptions of moral causality, where perceived misfortune is associated with wrongdoing:

If you produce a child like that, some people say that parents sinned, that’s God’s punishment for them now in the home. (Teacher_interview)

Some parents indicate that as autism was uncommon in the past, its emergence must be linked to spiritual forces.

We sometimes tend to conclude that it could be spiritual issues and the reason we would say that is because we didn’t have these things in the past (Parent_FGD).

As inferred above, a dominant theme in the data represents the cause of autism as being directly associated with parental misdeeds for which they are being punished. Consequently, parents are put under extreme scrutiny within their communities, often leading to fear and self-questioning, as one participant related,

If one day I gave birth to ‘that’, I think I would question myself a lot. (Teacher_interview)

Data suggest that when autism is identified, families and communities begin to question:

Which parent brought it . . . so you are responsible. (Psychiatrist_interview)

While few community stakeholders linked autism to genetic inheritance, there was a strong focus on lineage, underlining the belief that autism reflects negatively on a family’s status and exacerbates social exclusion:

The father has started claiming that they don’t have this kind of disease in their home and it, therefore, must be from my side. (Mother of autistic child_interview)

Blame was disproportionately attributed to mothers in our dataset with the occurrence of autism often perceived as a direct result of past conflicts, prenatal experiences, or perceived negligence:

The mother could have missed something. (Religious leader_interview)

She might have quarreled with someone when I was in the belly. (Autistic young person_interview)

The father started to blame the mother for making the child dull due to too much love. (Parent_FGD)

Together these reports suggest a strong societal expectation that the mother is primarily responsible for a child’s well-being and is more heavily scrutinised when they diverge from expected developmental milestones.

Theme 3: Biopsychosocial Causes

Participants identified a range of biopsychosocial factors associated with autism, including modern medical interventions, genetic heritability, dietary factors, and psychological trauma.

Participants from all three districts reported the view that autism ‘could be the side effects of these family planning medications’ (Parent_FGD) introduced through Western medicine and fertility health advice. Again, mothers were under particular scrutiny as they transitioned from traditional methods to chemical contraceptive alternatives:

This medication for family planning needs to be thoroughly investigated. There are high chances that some of these scenarios we are discussing today are due to the use of these medications. (Community leader_interview)

Reports contrast past reproductive practices, often characterised by the absence of family planning interventions, with a modern emphasis on contraception, which is influenced by economic, educational, and demographic considerations:

Those days we didn’t have family planning and a woman would give birth to even up to twenty children if she can manage because there was nothing to stop her. Today, money is driving the world, education and issues to do with overpopulation has brought in this agenda of family planning. It’s now thought that maybe some of these medications we are taking is what is bringing about this problem. (Community leader_interview)

The data reveal a common apprehension regarding the unintended consequences of medical interventions, emphasising an anxiety surrounding these in relation to the perceived growing prevalence of autism.

Alongside concerns regarding family planning, participants suggested that autism may be caused during the period of gestation. The mother is, again, often identified as responsible due to ‘something that was not detected early enough’ (Religious leader_interview), not following ‘the right procedure during pregnancy time’ (Teacher_interview) or ‘some psychological issues that in turn affected the children’ during gestation (Parent_FGD). However, other participants associated autism with the process of childbirth itself suggesting that ‘the problem these children suffer hails from birth’ (Parent_FGD) and might be the result of ‘missing out on something at the time of delivery’ (Religious leader_interview). These explanations underscore the gendered way that causal effects are frequently attributed with respect to autism when there is limited understanding.

The subtheme of genetic heritability, while minor, was represented across all three districts and by a range of stakeholders including health workers, community leaders, and teachers:

Now there is this one who was brought up as an orphan and had this condition, gave birth to a child who suffered this condition. In that way, we concluded that it was inherited. (Community leader_interview)

By identifying the genetic relationships, some participants recognised the potential for dispelling traditional causal explanations of it being a curse ‘transmitted by touching’ (Parent_FGD) or the result of divine retribution:

If it’s a genetic disorder, what should be done, what is the role of the religious leaders, what’s the role of each stakeholder? (Religious leader_interview)

As this religious leader suggests, a focus on genetic causes can serve to shift the focus away from blame towards seeking support and development.

The final subtheme in the biopsychosocial theme relates to the association between autism and the psychological trauma that followed from the conflict which engulfed Northern Uganda between 1986 and 2006. The conflict had a disproportionate impact on the Acholi, the largest ethnic group in the area:

These children of autism, this first of all was an area that had war in the past, this is a post-conflict area, this is where war was so intense . . . people tend to derive that mostly maybe it’s something that could have resulted as a result of the conflict, that’s the first school of thought. (Health worker_interview)

Some suggested autism was caused by the trauma experienced by ‘mothers during pregnancy’ (Parents_FGD) and for others, the ‘socio-emotional challenges’ for those children caught up in the conflict also led to some being ‘registered as autistic’ (Ministry of education_interview).

Theme 4: Help-Seeking Responses

Varying perceptions regarding the causes of autism led to different help-seeking responses, largely grouped into religious, traditional, and modern medical responses. Our data suggest that families might seek help through all of these options, often beginning with more traditional interventions:

There are three treatment options . . . There are those ones who believe in God and believe in culture. They first go to church, when church fails, they go to the witch doctors or herbalists, if it fails, then they come to the hospital. So by the time they come, in most cases they have tried several options. (Psychiatrist_interview)

Those who believed that autism was caused by an evil spirit or demon sought help from religious leaders:

Some of them take children, if they were born again, to be prayed upon because they [believe] that such a child could have been a victim of the evil spirit. (Health worker_interview)

We thought, through prayers, calling prayers, maybe they were demons or what, maybe it will go away but still it’s there. (Religious leader_interview)

Given the deeply stigmatising supernatural explanations for autism and the lifelong effects this might have for parents and the wider family, there was evidence of this leading to a devalued perception of these children and – in some cases – physical abuse and neglect:

Sometimes I am beaten and others abuse me [and say] that I am stupid. (Autistic young person_interview)

The parents . . . either chain them or lock them in the house. They keep them there the whole time. (Disabled persons representative_interview)

In extreme cases, participants reported traditional responses including allowing the autistic child to die as a means of eliminating a perceived familial curse:

People consider those children to be cursed, do you know how people treat curses? . . . They feel like even those children should be buried alive because they are children without any future, without anything. So why should you keep a child which is just like a curse? You know, when you keep curses . . . you let it multiply. (School teacher _interview)

It would be referred to as ‘latin pa lubanga’, literally meaning the ‘child of God’. That this person has given birth to the child of God. So when you give birth to the child of God, you will have to go with that child to the well and drop it there in the water so that it may perish. Because the child is weak and disabled, it wouldn’t be of any help but bother the parents. So the elders would gather and go to a flowing stream. The mother would tie the child on the back with a weak robe and not a tight one so that the child would slip off from the back. They would then search in pretense for the child even when they knew where the child has fallen until the child has suffocated and died then brought back home to be buried. That is how we used to manage it here in Acholi. (Community leader_interview)

Examples of abuse, neglect, and the practice of infanticide were anecdotally reported by participants across all three districts although there was some indication that such practices were becoming less common. Such accounts indicate the significant risk that is posed to autistic infants and children in the context of extreme poverty and limited understanding as to the causes of autism.

The alternative help-seeking response was to engage with medical professionals. One psychiatrist reported that

Most of the children that I have seen on the spectrum have come and are being referred by the ENT surgeon. (Psychiatrist_interview)

This suggests that there is a lack of understanding among communities and medical professionals who are initially referring for sensory impairments. It is purportedly due to this knowledge gap that mean families ‘don’t go back for medical review’ (Social worker_interview). Tied to this, however, is a suspicion towards modern (Western) medicine meaning that families might receive ‘divergent advice, some telling her the hospital medicine doesn’t work, some that she should go to the witch doctor’ (School matron_interview).

Discussion

This study offers important and novel insights into the perceived causes of autism from sub-Saharan Africa. It builds on important qualitative studies, including those conducted in Kenya (Gona et al., 2015), Ethiopia (Tekola et al., 2016; Tilahun et al., 2019), and Ghana (Oti-Boadi et al., 2020) but situates findings within Northern Uganda. The four themes from our data indicate a general lack of knowledge regarding the causes of autism; a reliance on supernatural explanations; associations between biopsychosocial interventions and autism; and consequently, different help-seeking responses.

Our data overwhelmingly suggested that autism across this region is largely still misunderstood. Despite evidence of autism traits among communities, stakeholders and even medical professionals reported a lack of knowledge and sometimes associated it with mental illness or learning difficulties. This might be due to a lack of clinical exposure among health professionals (Kasujja et al., 2024; Namuli et al., 2020); however, it might also be explained by the cultural disconnect between the behavioural expression of autism in the Ugandan context and the descriptions of diagnostic criteria which were first developed in the Global North. Although de Leeuw et al. (2020) also suggest that the higher prevalence of infectious diseases, along with greater exposure to environmental toxins and malnutrition in low-income settings, may produce an autism behavioural phenotype more frequently accompanied by general developmental delays. Such outcomes signal the need for further development of culturally sensitive diagnostic processes and psychoeducation among families and community stakeholders in Uganda (Kakooza-Mwesige et al., 2014; Ouma et al., under review).

Connectedly, our study showed that autism is still predominantly associated with supernatural causes, including witchcraft, curses, or divine punishment. This reflects, more generally, theories of autism and disability that are prevalent across Africa and based on pluralistic belief systems regarding health including sociocultural, spiritual, and moral interpretations (Bakare & Munir, 2011). It resonates with parents’ and professionals’ qualitative accounts in the coastal region of Kenya (Gona et al., 2015) and Ghana (Oti-Boadi et al., 2020), which found a reliance on preternatural explanations. Such representations contribute to profound stigmatisation (Mitter et al., 2019) and, according to our data, can result in neglect, abuse, and, in extreme cases, infanticide to eliminate a perceived ‘curse’. Similar findings are reported in other parts of Africa, including rural parts of Guinea, Niger, Sierra Leone, Togo, and South Africa with the practice among disabled children potentially more widespread than formally documented (Njelesani et al., 2018; Van der Westhuizen, 2009). It is important to note that infanticide among disabled children is not specific to Africa and is also evident in Brazil (Araújo, 2021), Malaysia (Razali et al., 2014), and India (Chaney, 2021) among other nations. It was also commonplace in countries throughout the West up to and beyond the modern era (Moseley, 1986) and continued in many ways through the eugenics movement across Europe and the United States into the twentieth century (Baker & Lang, 2017; Rembis, 2018). Since this time, international legislation has been developed to protect the rights of disabled children through the United Nations (2006) Convention on the Rights of Persons with Disabilities (which has been ratified by Uganda), but this practice clearly remains a matter of grave concern and in need of significant community intervention.

Participants in our study indicated a particularly gendered framing of the causes of autism, with various references to maternal blame. Frequently, it was associated with inter- or intra-familial conflicts involving mothers, use of modern contraceptives, perceived prenatal negligence, or perceived inappropriate care. Given the established evidence that indicates associations between the condition and prenatal and perinatal factors including prenatal stress, as well as gestational diabetes, maternal infections and drug use during pregnancy, caesarean delivery, preterm delivery, post-term delivery, and low Apgar score (Arinda et al., 2021; Manzari et al., 2019; Ouma et al., under review; Pham et al., 2022), it is perhaps understandable – on some level – for participants to identify a causal relationship between autism and the mother. However, what is marked in the accounts in this study is the negatively framed nature of these associations with a significant emphasis on the mother being to ‘blame’. Again, this is not dissimilar to the kinds of attitudes that were prevalent in the West only a few decades ago, where according to Bettleheim ‘refrigerator mothers’ were responsible for causing autism through their ‘coldness’ and that removal of the children from these negative environments to live in residential facilities was warranted (Cleary et al., 2023). For these mothers, including those in our sample, positing maternal blame serves to generate what Selman et al. (2018) term ‘courtesy stigma’ as well as ‘internalised stigma’ that can lead to families not disclosing their child’s autism diagnosis and so not accessing the support necessary for their care and development. Consequently, mothers of autistic or disabled children experience prejudice and isolation, are at greater risk of separation (and thus lone-parenting), and report poorer mental health outcomes (Mbanjwa & Harvey, 2023; Smith-Young et al., 2022).

Finally, our data indicate that families of autistic children engaged in both traditional and modern medical help-seeking practices. Accounts suggest that these approaches were typically pursued sequentially, most often beginning with consultations with spiritual or traditional leaders before seeking care from medical professionals. This pattern largely aligns with the findings of Gona et al. (2015), who observed that contemporary African contexts frequently integrate traditional belief systems with modern medical practices. In their study, families often engaged in both forms of consultation concurrently.

Limitations

Despite the valuable insights gained from this study, several limitations should be noted. This study included participants from three districts from the Acholi region of Northern Uganda. Therefore, the findings may not be transferable to other parts of Uganda. The inclusion of autistic children in this study was conceived as a pilot initiative and represents, to our knowledge, one of the first attempts on the African continent to incorporate autistic children’s perspectives within qualitative research. Nine verbal autistic young people participated; however, most took part in focus groups alongside trusted adults, whose presence may have shaped or moderated their contributions. Although additional accessible methods (e.g. Draw–Write–Tell; Lewis et al., 2024) were incorporated into the study design, none of the participants elected to use these approaches. These considerations emphasise the need for more inclusive, flexible, and participatory methodologies capable of supporting autistic representation across a broader range of communicative preferences, particularly in low-resource settings (Fletcher-Watson et al., 2019; Nicolaidis et al., 2019). Future research should prioritise the cultural adaptation of evidence-based participatory methods to enhance contextual relevance and accessibility, thereby enabling fuller participation, including that of minimally verbal individuals. Furthermore, as noted above, it was not possible to involve Ugandan autistic adults as study advisors. Subsequent research would benefit from collaboration with community organisations to facilitate the meaningful inclusion of autistic adults in shaping and guiding research agendas in this field.

Conclusion

This study indicated the different ways that autism and its causes are perceived in Northern Uganda. This is particularly salient, given that less is known about the prevalence, cultural attitudes, support provision, and longitudinal outcomes of autistic people in Africa compared to other continents (Abubakar et al., 2016; Bonney et al., 2022; Franz et al., 2017). It found limited understanding about the causes of autism or misconceptions regarding its relationship to supernatural causes or some biopsychosocial interventions. Such renderings led to spiritual and/or medical help-seeking responses, with evidence of potentially fatal outcomes where the former is pursued. Our study, therefore, urges necessary, but culturally sensitive, engagement with communities in this region to generate what Eze (2018) terms ‘life-saving awareness’ through co-developed and community-led approaches that foster understandings of autism that reduce blame, counter stigma, and promote supportive responses. This process can inform public health policies and strengthen community capacities around early identification, family psychoeducation, and effective interventions that support meaningful outcomes for autistic people.

Supplemental Material

sj-pdf-1-aut-10.1177_13623613261434571 – Supplemental material for Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda

Supplemental material, sj-pdf-1-aut-10.1177_13623613261434571 for Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda by Jonathan Vincent, Diana Kajjumba, Richard Amone, Edward John Estlin, Kennedy Kosko Okello, Franceska Akello, James Okello, Richard Idro, Catherine Abbo and Simple Ouma in Autism

Footnotes

Acknowledgements

We extend our sincere thanks to all the participants in this study. Their rich and candid accounts shaped the development of this article. This work honours their experiences and aims to support improvements in understanding the autistic experience and outcomes in northern Uganda.

ORCID iDs

Jonathan Vincent

Simple Ouma

Ethical Considerations

The authors confirm that ethical approval was granted from institutions in both the United Kingdom and Uganda for this study.

Consent to Participate

All participants provided written informed consent.

Author Contributions

Jonathan Vincent: Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Resources; Validation; Writing – original draft.

Diana Kajjumba: Formal analysis; Investigation; Methodology; Writing – original draft.

Richard Amone: Formal analysis; Investigation; Methodology; Writing – original draft.

Edward John Estlin: Conceptualization; Formal analysis; Methodology; Writing – original draft.

Kennedy Kosko Okello: Conceptualization; Investigation; Project administration; Writing – review & editing.

Franceska Akello: Conceptualization; Methodology; Writing – review & editing.

James Okello: Conceptualization; Methodology; Writing – review & editing.

Richard Idro: Conceptualization; Methodology; Writing – review & editing.

Catherine Abbo: Conceptualization; Methodology; Writing – review & editing.

Simple Ouma: Conceptualization; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Resources; Writing – original draft.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Joy Welch Fund, UK.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Qualitative data for this study may be available on request from the first author.

Supplemental Material

Supplemental material for this article is available online.

Notes

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