Sudanese parents show limited autism knowledge, survey reveals

Only about one in ten parents in Sudan has a solid grasp of autism spectrum disorder, according to a new cross-sectional survey that reveals deep gaps in knowledge, pervasive misconceptions, and a widespread fear of stigma that researchers say is delaying diagnosis and intervention for children across the country. The study, published in BMC Pediatrics, is among the most comprehensive attempts to map parental awareness of autism in Sudan, a nation where epidemiological data on neurodevelopmental conditions have long been scarce and where ongoing conflict has further strained an already fragile healthcare system.

The research team, led by scientists based at King Saud University in Riyadh and a consortium of Sudanese institutions including the Universities of Gadarif, Alzaiem Alazhari, Omdurman Islamic, Elrazi, Gazira, and Kordofan, recruited 947 parents from four geographic regions of Sudan: the North, East, South, and Central zones. Data collection took place over two months, from January to February 2026, using face-to-face interviews with a structured questionnaire that was specifically culturally adapted for the Sudanese context. The instrument comprised 31 knowledge items, and its internal consistency was assessed statistically, yielding a Cronbach’s alpha of 0.72 — a figure conventionally interpreted as acceptable reliability for a survey instrument of this type. To classify knowledge levels, the researchers set a threshold: participants scoring 60 percent or higher on the knowledge items were categorized as having good knowledge of autism spectrum disorder.

The headline finding is stark. Only 10 percent of the parents surveyed demonstrated good knowledge of ASD. That means roughly nine out of ten parents in the sample fell below the threshold that the researchers considered adequate for recognizing the condition and understanding its characteristics. Given that autism is a neurodevelopmental condition affecting millions of people worldwide, and that parental knowledge is widely regarded as the critical first link in the chain of early recognition, referral, and timely intervention, the result points to a substantial public health blind spot in a country of roughly 50 million people.

The picture, however, is not uniformly bleak. Certain aspects of autism were reasonably well recognized by the surveyed parents. A majority — 75.2 percent — were aware that autism exists on a spectrum of severity, an understanding consistent with the modern diagnostic framing of the condition. And 60.6 percent correctly identified delayed language development as a hallmark feature, one of the most common early warning signs that prompts families in higher-awareness settings to seek developmental evaluation. These results suggest that some foundational awareness has penetrated the population, likely through media, community networks, or limited clinical contact.

But alongside these pockets of understanding, the survey documented persistent and clinically consequential misconceptions. Perhaps the most striking: 72.4 percent of parents believed that autistic children possess special talents — a stereotype, sometimes called the “savant myth,” that can distort expectations and obscure the broad range of abilities and support needs among autistic children. Nearly six in ten respondents, 59.3 percent, incorrectly endorsed the idea that non-verbal communication is effective with autistic children, a misconception that may lead families away from evidence-based communication strategies. More troubling still, 42.3 percent attributed autism to parental neglect, a belief that shifts blame onto caregivers rather than recognizing the complex genetic and neurobiological underpinnings of the condition, and one that likely compounds the guilt and isolation experienced by families of autistic children. And 39.5 percent believed that autism is curable — a misconception that can drive families toward unproven and sometimes harmful “treatments” while diverting attention from supportive interventions that improve outcomes.

The perceptual dimension of the findings may be the most consequential of all. When asked about their attitudes toward diagnosis, 68.8 percent of parents said they feared that an autism diagnosis would lead to discrimination. Nearly half — 48.5 percent — felt that autism is frequently missed in clinical settings. Together, these two figures sketch a feedback loop with serious implications: parents fear stigma if their child is labeled, clinicians lack the training and capacity to detect the condition, and children who might benefit from early intervention instead go unidentified, often for years, during the developmental window in which such interventions are most effective.

To understand who was most and least informed, the researchers turned to binary logistic regression, a statistical technique that models the probability of a binary outcome — in this case, having good knowledge of ASD — as a function of multiple predictor variables simultaneously. The results challenged several conventional assumptions. Parents aged 50 and older had significantly lower knowledge, with an odds ratio of 0.27 and a p-value of 0.038, meaning their odds of demonstrating good knowledge were roughly three-quarters lower than those of younger parents after adjusting for other factors. Fathers were also less knowledgeable than mothers, with an odds ratio of 0.53 and a p-value of 0.019 — a pattern consistent with global literature showing that mothers typically shoulder the burden of monitoring child development and therefore accumulate more relevant knowledge.

The most surprising finding, however, concerned geography. Urban residents had significantly lower knowledge than their rural counterparts, with an odds ratio of 0.54 and a p-value of 0.013. The researchers themselves flagged this as unexpected, noting that it runs counter to the standard assumption that health literacy scales with urban proximity to hospitals, specialists, and educational infrastructure. The authors suggest the finding challenges prevailing assumptions about health literacy in cities and may reflect the specific social and displacement dynamics of contemporary Sudan, where urban populations have been buffeted by economic collapse and conflict, and where rural community networks may paradoxically transmit health information more effectively than fragmented urban ones.

The implications of the study extend well beyond Sudan’s borders. Globally, most autism research and awareness infrastructure is concentrated in high-income countries, while the majority of autistic children live in low- and middle-income settings where diagnosis is often delayed by a decade or more, when it happens at all. In Sudan, the combination of limited epidemiological data, a shortage of developmental pediatricians, and — since April 2023 — a devastating armed conflict that has displaced millions and crippled health services, means that autism identification depends almost entirely on parental vigilance. When nine out of ten parents lack adequate knowledge, and nearly seven in ten fear discrimination upon diagnosis, the practical likelihood of a child being identified and supported early becomes vanishingly small.

The study’s methodology, while robust for its setting, carries the limitations inherent to its design. Convenience sampling — recruiting participants who are accessible rather than randomly selected from the population — can introduce bias, and cross-sectional surveys capture a single moment in time rather than tracking change. Still, the large sample size of 947, the geographic spread across four regions, the culturally adapted instrument with acceptable reliability, and the use of formal statistical modeling to identify predictors give the findings considerable weight. The research was supported by the Ongoing Research Funding program — Research Chairs (ORF-RC-2025-0500) at King Saud University, though the funder played no role in study design, data collection, analysis, or the decision to publish.

The authors’ conclusions are direct. Sudan needs culturally adapted educational programs that correct specific misconceptions — particularly the beliefs that autism stems from parental neglect, that it is curable, and that autistic children uniformly possess special talents. It needs enhanced developmental screening embedded in routine pediatric care, so that red flags such as delayed language are systematically detected rather than left to parental observation. And it needs strengthened healthcare capacity for early ASD identification, a challenge made acute by the displacement of health workers and the destruction of clinical infrastructure. The finding that fathers, older parents, and urban residents are the groups with the lowest knowledge offers policymakers a precise targeting strategy: awareness interventions should not be distributed uniformly, but concentrated where the regression models show the greatest deficits.

For autism researchers globally, the study adds to a growing body of evidence that awareness gaps in low-resource settings follow predictable but correctable patterns. Early intervention in autism — encompassing behavioral, communication-focused, and family-mediated therapies — is consistently shown to improve developmental outcomes, but its effectiveness depends on identification during the preschool years. Every month of delay driven by misinformation or fear of stigma represents lost developmental opportunity for a child. In Sudan, where the healthcare system is under extraordinary strain, the study makes clear that the cheapest and most scalable intervention available may be information itself: correcting misconceptions, reducing stigma, and equipping parents — especially fathers, older parents, and urban families — with the knowledge to recognize autism and act on it.