Introduction
Autism spectrum disorder (ASD) and other neurodevelopmental disabilities (NDDs) represent a group of life-long conditions characterised by impairments in social interaction, communication, and the presence of restricted, repetitive patterns of behaviour [1]. The global prevalence of ASD has been rising, with current estimates from the World Health Organization (WHO) suggesting that 1 in 100 children may be affected worldwide [2]. In high-income countries (HICs), decades of research and policy development have established pathways for early detection and intervention [3,4]. However, this progress is not mirrored in low- and middle-income countries (LMICs), particularly in sub-Saharan Africa (SSA), where pervasive stigma, limited specialist manpower, and under-resourced health systems create a landscape of profound neglect for individuals with ASD/NDDs [5,6].
Nigeria, Africa's most populous nation, bears a significant portion of this burden. Existing literature, though nascent, indicates low levels of public awareness, with ASD often misattributed to spiritual causes or poor parenting [7,8]. This is particularly acute in the Northwest geopolitical zone, a region comprising states such as Kano, Kaduna, Katsina, and Jigawa. This region has some of the country's highest fertility rates and child population densities, yet it faces severe challenges including poverty, insecurity, and a strained healthcare system [9]. Preliminary studies from this region, primarily involving healthcare workers, have flagged critically low knowledge levels [10,11]. However, a comprehensive, large-scale assessment of the general population is lacking.
Understanding the specific context of Northwest Nigeria is crucial. The region's unique socio-cultural, educational, and economic profile likely exacerbates the challenges associated with NDDs. A robust, region-specific evidence base is essential to inform effective and culturally appropriate interventions. This study, therefore, aimed to conduct a large-scale (n=2,500) investigation across four key states in Northwest Nigeria (Kano, Kaduna, Katsina, and Jigawa) to quantitatively evaluate the triad of awareness, knowledge, and evidence of coherent action regarding ASD/NDDs. The findings are intended to galvanise a targeted regional response and serve as a model for similar contexts in SSA.
Materials and Methods
Study Design
This was a descriptive cross-sectional survey.
Study Setting
The study was conducted in four states in Northwest Nigeria: Kano, Kaduna, Katsina, and Jigawa. The study was conducted over a 12-month period in 2024. This region is predominantly Hausa-speaking and has a predominantly Islamic population, with unique socio-cultural norms that influence health-seeking behaviour.
Sample Size Determination
The sample size was calculated using the formula for estimating a single population proportion [12]. Assuming a conservative prevalence (p) of 50% for low awareness, a 95% confidence level (Z=1.96), and a margin of error (d) of 2%, a minimum sample size of 2,401 was derived. This was rounded up to 2,500 to account for potential non-response.
Sampling Technique
A multi-stage sampling technique was employed. In the first stage, the four states of Kano, Kaduna, Katsina, and Jigawa were purposively selected to represent the Northwest region. In the second stage, three local government areas (LGAs) were randomly selected from each state, yielding 12 LGAs. In the third stage, participants aged 18 and above were recruited from diverse settings (community centres, markets, primary healthcare centres) using a systematic random sampling approach from available community registers to ensure a broad representation.
Inclusion and Exclusion Criteria
Inclusion criteria were: (1) resident aged 18 years or older in one of the four selected states; (2) ability to comprehend either English or Hausa; and (3) provision of informed consent. Exclusion criteria were: (1) severe cognitive or physical impairment that would preclude participation in the interview; and (2) unwillingness to participate.
Study Instruments
Data were collected using a pre-validated, semi-structured questionnaire with four sections:
Socio-demographic Questionnaire: Captured age, gender, educational level, occupation, state of residence, and urban/rural residence.
Autism Awareness Scale (AAS): Adapted from Bakare et al.,[7]. This 5-item scale assesses whether participants have ever heard of autism, their source of information, and their ability to recognise core symptoms.
Knowledge about Neurodevelopmental Disorders Inventory (KANDDI): A 20-item tool developed by the research team based on DSM-5 criteria and common misconceptions prevalent in Northern Nigeria. It covers aetiology, symptoms, and management. Responses are 'True', 'False', or 'Don't Know'. A correct answer scores 1, and an incorrect/'Don't Know' scores 0. The total score is converted to a percentage. Content validity was established by a panel of experts, and it achieved a Cronbach's alpha of 0.76 in a pilot study (n=120) in Kaduna.
Action Assessment Scale (AAS-2): This 10-item scale, adapted from the WHO's Mental Health Gap Action Programme (mhGAP) context assessment tool [13], evaluated two domains: (a) Individual/Family Action and (b) Perceived System/Authority Action. It was culturally adapted to include common help-seeking pathways in the Northwest, such as consulting a Malam (Islamic teacher).
All the instruments were translated into Hausa using standard forward-backward translation (adopting the WHO iterative back translation technique) and were pre-tested.
Study Procedure
Following ethical approval, trained, Hausa-speaking research assistants administered the questionnaires through face-to-face interviews. Written informed consent was obtained from all participants; for those unable to write, thumb-printing was used after a witnessed verbal explanation. Data collection took approximately 25 minutes per participant.
Ethical Consideration
The study procedures were reviewed and approved by the Health Research Ethics Committee of Ahmadu Bello University Teaching Hospital (ABUTH), Zaria, Nigeria (Ref: ABUTHZ/HREC/Q48/2023). Informed written consent was obtained from all participants. Confidentiality and anonymity of participants was maintained throughout the research process. Participants were duly informed they could withdraw from the study at any time without any consequences. The study was conducted in accordance with the principles of the Helsinki Declaration.
Statistical Analysis
Data were analysed using IBM SPSS Statistics Version 29. Descriptive statistics (frequencies, percentages, means, and standard deviations) were used to summarise socio-demographic variables and the main outcome variables. The chi-square test was used to examine associations between categorical variables (e.g., awareness and state of residence; awareness and educational level). Binary logistic regression was performed to calculate odds ratios (OR) with 95% confidence intervals (CI) for factors associated with awareness. Cramér's V was calculated as a measure of effect size for chi-square tests. A p-value of <0.05 was considered statistically significant.
Results
A total of 2,500 participants from the four Northwestern states completed the study. The sample had a mean age of 33.5 years (SD=10.2), with a slight majority being female (1,320, 52.8%). A critical characteristic of this cohort was the generally low level of formal education, which is representative of the region. A combined 72.0% (n=1,800) of participants had either no formal education (44.0%, n=1,100) or only Quranic education (28.0%, n=700). Only 10.0% (n=250) held a university degree. The sample was nearly evenly split between urban (1,300, 52.0%) and rural (1,200, 48.0%) residents, with representation from Kano (28.0%), Kaduna (26.0%), Katsina (24.0%), and Jigawa (22.0%).
The results, detailed in Table 1, paint a picture of a population with a critical deficit in awareness and knowledge of ASD/NDDs. The foundational finding is that the vast majority of the population is entirely unaware, with only 21.0% (n=525) of the 2,500 participants having ever heard of autism, leaving a staggering 79.0% (n=1,975) unaware.
Among the small subset who were aware (n=525), the sources of information were revealing. Mass media, specifically television and radio, was the primary source for over half of them (52.0%, n=273), underscoring the importance of these traditional channels in the region. Healthcare workers were the source for only 20.0% (n=105), indicating a significant missed opportunity for the health system to be a primary educator. Perhaps most alarmingly, even among those who had heard of autism, meaningful understanding was scarce. Table 1 shows that only 19.0% (n=100) of this aware group could correctly identify two or more core symptoms of ASD, meaning that over 80% of them had only a superficial or potentially mistaken understanding of the condition.
This lack of depth is further quantified by the overall knowledge scores on the KANDDI. The mean score for the entire sample was 35.2% (SD=11.8), which falls deep into the 'poor knowledge' category. When participants were categorised, the results were stark: 88.0% (n=2,200) of the entire cohort were classified as having 'poor' knowledge (score ≤50%), while a mere 1.0% (n=25) could be classified as having 'good' knowledge (score >70%).
The data on actionable steps, presented in Table 2, reveal a near-complete systemic failure to translate even the minimal existing awareness into coherent action, at both the individual and governmental levels.
Regarding individual and family action, the data on help-seeking intentions are telling. While half of the participants (50.0%, n=1,250) stated they would first consult a medical doctor for a developmental concern, a very substantial 35.0% (n=875) reported that their first recourse would be a traditional or spiritual healer (Malam). This highlights the powerful influence of cultural and religious beliefs on health-seeking behaviour and suggests that a significant portion of children are being diverted away from the formal health system at a critical early stage.
The most striking finding in this domain, however, is the near-universal lack of access to support. As shown in Table 2, 94.5% (n=2,363) of participants reported having no access to any formal support services for NDDs, such as speech therapy or special education. This indicates that even for the small minority who navigate the help-seeking barriers successfully, the necessary resources to manage the condition are virtually non-existent.
The perception of systemic action was overwhelmingly and almost uniformly negative. An astounding 96.4% (n=2,410) of respondents believed their local authorities had no specific policy or programme for NDDs. This public sentiment of governmental neglect is further reinforced by the fact that 98.2% (n=2,455) of the entire sample rated the government's commitment to addressing NDDs as either "Poor" or "Non-existent." This near-consensus points to a profound failure of policy and political will, creating an environment where coherent action to support individuals with ASD/NDDs is impossible.
Bivariate analysis (Table 3) revealed significant associations between awareness of ASD and several socio-demographic factors. Awareness was strongly associated with higher educational attainment (χ² = 310.2, df = 3, p < 0.001; Cramér’s V = 0.35, indicating a moderate-to-large effect size). Significant associations were also observed for state of residence (χ² = 28.6, df = 3, p < 0.001) and urban versus rural residence (χ² = 42.1, df = 1, p < 0.001). Gender was not significantly associated with awareness (χ² = 1.2, df = 1, p = 0.27).
Binary logistic regression (Table 4) further quantified these associations. After adjusting for all variables, participants with a university degree had 4.2 times higher odds of being aware of autism compared to those with no formal education (AOR = 4.2, 95% CI: 3.1–5.7, p < 0.001). Secondary education (AOR = 3.1, 95% CI: 2.4–4.0, p < 0.001) and Quranic-only education (AOR = 2.0, 95% CI: 1.5–2.7, p < 0.001) also conferred significantly higher odds. Urban residence was associated with twice the odds of awareness compared to rural residence (AOR = 2.1, 95% CI: 1.6–2.7, p < 0.001). The model showed good fit (Hosmer-Lemeshow χ² = 8.3, df = 8, p = 0.40) and correctly classified 80.4% of cases.
| Variable | Category | Frequency (n) | Percentage (%) |
| Heard of autism | Yes | 525 | 21.0 |
| No | 1,975 | 79.0 | |
| Primary source of information (n = 525) | Media (TV/Radio) | 273 | 52.0 |
| Healthcare worker | 105 | 20.0 | |
| Friend/Family | 84 | 16.0 | |
| Internet/Social Media | 63 | 12.0 | |
| Could identify ≥2 core symptoms (n = 525) | Yes | 100 | 19.0 |
| No | 425 | 81.0 | |
| Overall knowledge score (KANDDI) | Mean (SD) | 35.2 (11.8) | -- |
| Poor (≤50%) | 2,200 | 88.0 | |
| Fair (51–70%) | 275 | 11.0 | |
| Good (>70%) | 25 | 1.0 |
| Domain | Item | Frequency (n) | Percentage (%) |
| Individual/Family Action | Would first consult a medical doctor if concerned | 1,250 | 50.0 |
| Would first consult a traditional/spiritual healer (Malam) | 875 | 35.0 | |
| Would do nothing / wait and see | 375 | 15.0 | |
| Has access to formal support services | 137 | 5.5 | |
| Reports no access to formal support services | 2,363 | 94.5 | |
| Perceived System/Authority Action | Believes local authorities have a policy/programme for NDDs | 90 | 3.6 |
| Believes local authorities have no policy/programme for NDDs | 2,410 | 96.4 | |
| Rates government commitment to NDDs as "Poor" or "Non-existent" | 2,455 | 98.2 |
| Characteristic | Category | Aware (n=525) n (%) | Unaware (n=1,975) n (%) | χ² (df) | p-value | Cramér’s V |
| Educational level | No formal education | 88 (8.0) | 1,012 (92.0) | 310.2 (3) | <0.001 | 0.35 |
| Quranic only | 105 (15.0) | 595 (85.0) | ||||
| Secondary | 180 (36.0) | 320 (64.0) | ||||
| University | 152 (60.8) | 98 (39.2) | ||||
| State of residence | Kaduna | 170 (26.2) | 480 (73.8) | 28.6 (3) | <0.001 | 0.11 |
| Kano | 140 (20.0) | 560 (80.0) | ||||
| Katsina | 120 (20.0) | 480 (80.0) | ||||
| Jigawa | 95 (15.8) | 455 (84.2) | ||||
| Residence type | Urban | 345 (26.5) | 955 (73.5) | 42.1 (1) | <0.001 | 0.13 |
| Rural | 180 (15.0) | 1,020 (85.0) | ||||
| Gender | Male | 240 (20.3) | 940 (79.7) | 1.2 (1) | 0.27 | 0.02 |
| Female | 285 (21.6) | 1,035 (78.4) |
Note: df = degrees of freedom; Cramér’s V values of 0.10, 0.30, and 0.50 represent small, moderate, and large effect sizes, respectively. Percentages are row percentages.
| Predictor | Reference Category | Adjusted Odds Ratio (AOR) | 95% Confidence Interval | p-value |
| Educational level | No formal education | |||
| Quranic only | 2.0 | 1.5 – 2.7 | <0.001 | |
| Secondary | 3.1 | 2.4 – 4.0 | <0.001 | |
| University | 4.2 | 3.1 – 5.7 | <0.001 | |
| State of residence | Jigawa (lowest awareness) | |||
| Kaduna | 2.3 | 1.7 – 3.1 | <0.001 | |
| Kano | 1.4 | 1.0 – 1.9 | 0.04 | |
| Katsina | 1.3 | 0.9 – 1.8 | 0.11 | |
| Residence type | Rural | |||
| Urban | 2.1 | 1.6 – 2.7 | <0.001 | |
| Gender | Male | |||
| Female | 1.1 | 0.9 – 1.4 | 0.28 |
Model summary: Nagelkerke R² = 0.28; Hosmer–Lemeshow goodness-of-fit χ² = 8.3, df = 8, p = 0.40; Overall classification accuracy = 80.4%
Note: The model was adjusted for all variables shown. Odds ratios >1 indicate higher odds of being aware of autism.
Discussion
This large-scale study, the first of its kind focused exclusively on Northwest Nigeria, provides compelling and disquieting evidence of a massive gap in the public and systemic landscape for ASD/NDDs. The findings from Kano, Kaduna, Katsina, and Jigawa reveal a situation more critical than previously reported in other parts of Nigeria, characterised by a triad of very low awareness, poor knowledge, and a near-total lack of coherent action.
The finding that only 21.0% of the 2,500 participants were aware of autism is lower than the 24.4% found in a previous national study and significantly lower than the 31.3% reported among healthcare workers in Lagos [11]. This underscores the pronounced regional disparities within Nigeria. The high proportion of participants with no formal (44.0%) or only Quranic (28.0%) education in our sample directly contributes to this finding, as awareness was strongly linked to education (χ² = 310.2, p < 0.001; OR for university education = 4.2, 95% CI: 3.1–5.7). The primary reliance on TV/radio for information (52.0%) points to a strategic avenue for future awareness campaigns in this region. The very poor mean knowledge score of 35.2% and the fact that 81.0% of those who had heard of autism could not identify its core symptoms reflect a landscape dominated by misinformation, consistent with qualitative studies from Northern Nigeria that document attributions of NDDs to spiritual attacks (sihir) or divine will [8,14].
Most critically, our study quantifies the near-total vacuum of coherent action, which appears more severe in the Northwest. The high proportion of participants (35.0%) who would first consult a traditional healer or Malam is notably higher than the 25.0% reported in some national estimates, reflecting the deep-rooted cultural and religious frameworks for understanding health and illness in this region [15]. The near-universal lack of access to support services (94.5%) and the overwhelming perception of systemic neglect (96.4%) highlight a devastating lack of infrastructure and political will. This aligns with the documented scarcity of child psychiatrists and developmental paediatricians in the entire Northern region compared to the South [16].
The consequences of this triad of failure are profound. Children with ASD/NDDs in Northwest Nigeria are likely to be misdiagnosed, subjected to potentially harmful alternative treatments, and denied education and social participation, thereby compounding their disability. Families are left to cope in isolation, facing immense stigma and financial hardship.
Limitations
The study is limited by its cross-sectional design, which precludes causal inferences. Furthermore, the measure of 'action' was based on self-report and perception rather than direct observation or objective verification. Social desirability bias may have influenced some responses, particularly regarding help-seeking intentions. Finally, the generalisability of findings to other regions of Nigeria or other SSA countries should be made with caution given the unique socio-cultural context of Northwest Nigeria.
Conclusion
This study unequivocally demonstrates that Northwest Nigeria faces a monumental and acute challenge in addressing ASD and other NDDs. The gap here is not merely a gap but a critical chasm, deeper than the national average. Bridging this chasm requires an urgent, targeted, and culturally coherent effort.
Recommendations
Based on the results of the study, we recommend that:
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Government-led, Hausa-language mass-media campaigns co-designed with religious and traditional leaders to raise awareness and dispel myths, framing accurate information within a culturally acceptable context.
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Integration of basic NDD training into the curricula of primary healthcare workers, Malamai, and traditional birth attendants who are often the first point of contact.
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Development of a Northwest Regional Plan for NDDs, backed by dedicated funding from state governments and development partners, to establish at least one diagnostic and support centre per state.
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Empowerment of existing women's groups and community-based organisations to provide peer support and reduce stigma.
Without the above decisive and context-specific action, individuals with ASD/NDDs in Northwest Nigeria will continue to remain among the most marginalised and invisible populations.
Declarations
Authors’ Contributions
AAY, SMB, OAO, AHA, and BAY conceptualised and designed the study. AAY, SMB, OAO, AHA, and BAY were involved in data collection and analysis. AAY, SMB, OAO, AHA, and BAY drafted and revised the manuscript. All authors critically reviewed for intellectual content, approved the final version, and agreed to be accountable for all aspects of the work.
Informed Consent
Written informed consent was obtained from all participants prior to enrolment.
Availability of Research Data
Data are available upon reasonable request from the corresponding author.
Funding
The authors received no funding or financial support.
Conflict of Interest
The authors declare no conflict of interest.
Acknowledgements
The authors sincerely thank the participants, research assistants, and the various community leaders for their support throughout the study.