Stigma of Autism Spectrum Condition (ASC) in Lusaka, Zambia


Authors

Alexandra Pearson, Jillian M. Pierucci, Gabriela Aquino, Monica Perez, Sylvia Mwanza-Kabaghe, Francis Sichimba, Haatembo Mooya

Affiliations

Actually Alex, Neurodiverse Consulting

Department of Psychology, St. Mary’s University

Department of Human Development and Family Sciences, University of Texas at Austin

Department of Psychology, University of Notre Dame

Department of Educational Psychology, Sociology & Special Education, University of Zambia

Department of Psychology, University of Zambia

Corresponding Author

Correspondence concerning this article should be addressed to

Email: Jillian Pierucci

Keywords:

autism spectrum condition (ASC), stigma, Zambia, lower middle-income country (LMIC)

Abstract

Stigma derives from a variety of factors (e.g., ignorance, misinformation), and those stigmatized are often excluded and dehumanized, leading to negative ramifications (e.g., shame, embarrassment; Link & Phelan, 2006). Considering autism spectrum condition (ASC), the lack of ASC knowledge has been singled out as a cause of stigma - especially in resource-poor communities (Thornicroft et al., 2008). This study is the first to explore ASC stigma in Zambia and included participants (N = 40) who resided in Lusaka. Participants were caregivers of children with a developmental disorder – primarily ASC (n = 16), stakeholders in the community within the field of child development (n = 10), and psychology graduate students from a university in Zambia (n = 14). Participants completed items from the stigma subscale that was extracted from the Autism Stigma and Knowledge Questionnaire (ASK-Q; Harrison, Bradshaw, Naqvi, Paff & Campbell, 2017) measuring their perceptions of social stigma, ASC etiology, and treatment resulting from stigmatization. Using Chi-square Tests of Independence, no overall significant differences on the reported stigma emerged among the groups (p > .05). Other findings, using Analysis of Variance to analyze each item on the ASK-Q, showed marginal group differences in ASC stigma. This study highlights varying ASC knowledge in a lower-middle income country (i.e., Zambia) and illustrates the need for increased ASC knowledge to dismantle its stigma. Culturally-sensitive educational interventions about ASC hold power to transform communities’ mindsets by providing factual ASC information especially within resource-poor communities.

Introduction

Autism spectrum condition (ASC), also referred to as autism spectrum disorder, is a neurodevelopmental condition hallmarked by social communication differences along with restricted and/or repetitive behaviors and interests (American Psychological Association, 2013). This condition showcases itself through different social communication skills (e.g., monologuing about special interests and passions, using literal language, preferring time alone) along with presence of self-stimulatory behaviors (e.g., hand-flapping, fidgeting, bouncing, repeating a movie).

ASC is vastly known in the United States, which is the leading country in production of ASC research (Office of Autism Research and Coordination, 2012). However, knowledge about ASC etiologies, diagnostics, and treatments are often limited or nonexistent in lower/middle-income countries (LMICs). In such countries with less widespread access to current ASC research and resources, misinformation resides about ASC and prejudices continue to prevail. Reasons for these prejudices include but are not limited to incorrect ideations around the etiology of ASC or simply not knowing about ASC, which exacerbates stigmatization toward individuals with ASC and their families. The dearth of ASC knowledge in LMICs predicates stigmatization and accentuates the need for ASC awareness within these communities. Furthermore, ASC stigma strongly impacts the global dissemination of health services (Collins et al., 2011), thus producing a cyclical effect of late diagnosis or no diagnosis at all, limited ASC knowledge, and scanty ASC treatment services.

ASC Knowledge in Zambia

Previous research consistently shows meager ASC knowledge in LMICs [e.g., Nigeria (Bakare et al., 2009), Palestine Authority (Basha, 2014), and Iraq (Muhammad et al., 2013)]. Particularly, the etiology of ASC was barely known within the last decade amongst some professionals within LMICs – leading to a lack of diagnoses and treatments (Collins et al., 2011). Relevant to the location of the current study, Zambia recently illustrated that 79% of their university students had never heard of ASC (Chansa-Kabali, Nyoni & Mwanza, 2019). Furthermore, Nyoni and Serpell (2012) interviewed Zambian parents who had children diagnosed with ASC to better understand parental perceptions about ASC. All of the 17 parents reported having no knowledge about ASC before or after their children were diagnosed (2012). Recognizing there is limited ASC knowledge in Zambia, as evidenced by these researchers, it is important to iterate that no comprehensive report exists capturing ASC stigma in Zambia; thus, this study explored ASC stigma among a diverse sample of Zambians who were caregivers, stakeholders, and graduate students in Lusaka. This research is timely and important to report on ASC stigma in Zambia while ASC diagnoses are on the rise [Imran, Chaudry, Azeem, Bhatti, Choudhary & Cheema, 2011; Centers for Disease Control and Prevention (CDC), 2020] and to generate supportive evidence for needed ASC awareness to alleviate existing stigmas and their ramifications (e.g., shame; Link & Phelan, 2006).

Origins and Consequences of Stigma

Stigma is known as placing social disgrace onto individuals and has saturated societies for centuries, dating back to the Greek Era when slaves were considered inferior in society and devalued (Arboleda-Flórez, 2002). Stigma was once thought to serve as a survival mechanism for societies to delineate those who were socially disgraced (López-Ibor, 2002). That is, stigma became a survival mechanism to identify a supposed “danger” in society, and the certain person or group of people who posed this danger was/were then marked (i.e., stigmatized), as a way of protecting the rest of society. We now know that misconceptions and fear oftentimes lead to stigma (American Psychological Association, 2021). In other words, stigma is based on fear and misconceptions (APA, 2021) rather than any perceived danger. Thus, when people with disabilities are misunderstood and misjudged, this survival mechanism is activated to “protect” the rest of society. This, in turn, leads to the continued stigmatization of people with disabilities.

To date, there are different types of stigmas, such as self-stigma (e.g., internalized; negative belief of self) or public stigma (e.g., externalized; negative belief of group), both of which negatively impact those who are stigmatized. Self-stigma has shown to result in poor cognitive and behavioral outcomes, such as low self-esteem and reluctance to pursue opportunities, whereas public stigma often leads to negative emotional reactions casted onto and avoidance/escape behaviors by those associated with the particular group (Corrigan & Watson, 2012) – such as ASC. Additional hinderances of stigmatization are reported feelings of discrimination and a loss of social status. Stigmatization has also been linked with other poor outcomes like increased stress and deteriorating health (Link & Phelan, 2006). In the case of ASC, families can experience stigma by association. This affiliate stigma is when negative stereotypes are inflicted upon the family by society (Mak & Cheung, 2008; Papadopoulos, 2018). Meaning, other family members are also stigmatized as a product of association with the individual with ASC. Outcomes of affiliate stigma are shame and embarrassment about the individuals’ conditions and heightened anticipation of being in public settings (Tilahun et al., 2016). Stigma has a deep-rooted presence in our world, and its existence produces varying negative outcomes as shown by former research (Corrigan & Watson, 2012; Link & Phelan, 2006; Mak & Cheung, 2008; Papadopoulos, 2018; Tilahun et al., 2016); thus, it is important to identify the existence of stigma in order to effectively target and dismantle stigmatization.

Connecting Limited ASC Knowledge to ASC Stigma

Within the context of ASC stigmas, caregivers in LMICs have reported various instances of stigmatization occurring from educators, health care professionals, the general community, and even their own families (Guler, De Vries, Seris, Shabalala & Franz, 2018). For example, caregivers have disclosed receiving frequent harsh commentary such as, “your child is naughty”, and “you don’t teach your child proper manners” (pp. 1013; Guler et al., 2018). Other reports have surfaced where community health workers intentionally spread harmful information, leading to further isolation of the individual with ASC and the family (Guler et al., 2018). Additional consequences of public stigma for children with ASC are an increased risk of social rejection and loneliness (Osborne, McHugh, Saunders & Reed, 2008) amalgamated by a later age of diagnosis (Montiel-Nava et al., 2020). Caregivers throughout the world who also experience stigmatization have reported poorer mental health (e.g., depression), which further delays developmental progression of their family member(s) with ASC (Kinnear, Link, Ballan, & Fischbach, 2016; Bauminger & Kasari, 2000; Bauminger, Shulman & Agam, 2003; Zhou, Wang, & Yi, 2018).

Limited awareness of and lacking education about ASC contribute to stigmatization. Specifically focusing on limited ASC knowledge in Zambia, a recent study identified ASC ideologies reported by parents in Lusaka, Zambia (Nyoni & Serpell, 2012). Their reports showcased the educational disparities within the community regarding developmental delays, demonstrating that incongruencies of mainstream, factual knowledge about such conditions further ignites stigma. Compounding the effects of uneducated communities, families can feel unwelcomed or unaccepted to partake in society. For example, parents in Lusaka reported unsympathetic comments about ASC from the general public in the community like at social gatherings and church. These occurrences strongly discouraged the families from attending public functions with their children. Parents felt unsafe due to negative attitudes and opinions from professionals in the community (e.g., police officers, doctors, community health workers, teachers), their families (sometimes including husbands), and the general population. This resulted in caregivers feeling vulnerable and without social support, which highlights the immense need for educating Zambian communities about ASC in order to shift their mindsets (Nyoni & Serpell, 2012).

Furthermore, Zambia is a religious country with 95.5% of its population reporting as Protestant or Roman Catholic (The World Factbook, 2021), and dominating religious perspectives are a potential explanation of limiting the acceptance of ASC etiologies and treatments (Ravindran & Myers, 2012). Additionally, prior research has shown Central African communities attributing the cause of ASC to witchcraft, non-compliance to customs and traditional norms in marriage, and parental negligence (Drake, 1996), which further emphasizes the need to educate communities about ASC in a culturally-sensitive manner. These findings highlight sources from which stigmatization can derive (e.g., educators, family members) and are a snapshot of how stigma impacts both the individuals with ASC and their families.

Purpose and Importance of Current Study

The current study aimed to answer: What is the perceived stigma of ASC in Lusaka, Zambia? This study is of particular importance knowing the following: the ASC global prevalence is increasing, ASC stigmatization bears negative outcomes, and caregivers in LMICs have disclosed their adverse experiences from stigmatization (Guler, de Vries, Seris, Shabalala & Franz, 2018). This study is the first to report on the perceived ASC stigma within Lusaka from the community perspective (i.e., caregivers, stakeholders, and graduate students).

Method

Participants

Forty participants (Mage = 39.42 years; 12 males and 28 females) partook in the study and belonged to three exclusive groups: caregivers of children with developmental delays – primarily ASC (n = 16 with 14 of these caregivers having children with ASC); stakeholders within the community (n = 10; teachers, professionals in the field of child development, head masters of schools); and graduate students (n = 14; enrolled in a Master’s Applied Psychology program at a university in Zambia). Three stakeholders were also caregivers, and two other stakeholders were also graduate students. However, given these five participants’ pivotal roles in the community, their data were solely included in the stakeholder sample, thus, producing discrete data for the three groups of participants. All participants were part of a larger study conducted by a university in the southern part of the United States and a university in Zambia. The larger study had various aims, in which the researchers held intervention trainings for the caregivers, conducted interviews with the stakeholders, and provided informational workshops for the graduate students. Each participant was recruited by the local Zambian research partners and voluntarily consented to participate. No incentives were provided for the participants except for caregivers’ being compensated for their daily transportation to participate in the intervention trainings, which were separate of this study’s design and purpose.

Measure

The self-report measure employed in this study was an abbreviated version of the Autism Stigma and Knowledge Questionnaire (ASK-Q; Harrison, Bradshaw, Naqvi, Paff & Campbell, 2017). The original ASK-Q contains 55 items, which were validated by 16 international researchers representing 11 countries (i.e., United States, United Kingdom, Iran, India, Saudi Arabia, Malaysia, Tanzania, Senegal, Cape Verde, Zambia, and Burkina Faso) to ensure cross-cultural relevance. These original researchers categorized each item to the degree it assessed ASC knowledge and stigma, the cultural relevance of the item, and if it was clear/unambiguous. Important to note, this measure is suitable for collecting data in Zambia as avowed by previous research (Harrison et al., 2017). Overall, the 55 items from the ASK-Q measure ASC etiology, diagnosis, treatment, symptoms, and stigma.

For purposes of the current study, only the stigma subscale, which is comprised of 11 items, from the ASK-Q was utilized in order to explore ASC stigma in Lusaka. Within the 11-itemed stigma subscale, items one through eight are objective (i.e., verifiable as true or false). For these items, possible response options are: “true” and “false”, in which each item has a correct answer. Therefore, these eight items were scored for correctness. Higher percentage scores indicate more correctness. Content from these eight items measure ASC ideologies that lead to stigmatization (e.g., perceptions of aggression, preventability, lifelong impairment, cold parenting, supernatural phenomena) and the need for special education for those with ASC. Items nine through 11 measure community perception of stigma. For these items, possible response options are: “yes”, “no” or “I don’t know”. These three items are subjective given participants reported on their personal opinions about how the community perceived ASC stigma. See Appendix A for the ASK-Q stigma subscale, which includes the 11 items and their possible response options.

Procedure

To begin, this project had ethical approval from the ethic review boards at the researchers’ universities in order to conduct this research. Participants in the current study were recruited from a larger project and included: (1) caregivers that participated in a week-long intervention training for children with ASC (i.e., training parents as communication teachers to help their children), (2) graduate students that participated in a one-day workshop (i.e., targeting an increase in knowledge of childhood conditions including ASC), and (3) stakeholders that participated in qualitative interviews (i.e., gaining insight about services available in Zambia for individuals with atypical development and their families). The participants completed a hard copy of the ASK-Q’s stigma subscale (Harrison et al., 2017) by providing their self-reports on ASC stigma before partaking in their respective parts of the larger study (i.e., ASC intervention trainings, workshops, and interviews) to prevent the findings potentially being influenced by ASC knowledge acquired during participation within the larger study.

Results

In order to determine if there were any community group differences in ASC stigma as reported by caregivers, graduate students, and stakeholders, a Chi-square Tests of Independence was conducted. No significant differences on reported stigma emerged among the groups (p > .05).

Total scores of the first eight items on the ASK-Q were calculated out of a possible 100% based on correct responses. Thereafter, using Analysis of Variance, the average correctness of each item was compared for the three community groups: caregivers, graduate students, and stakeholders. Accordingly, no groups were significantly different in their knowledge of ASC stigma, F(2,37) = 1.99, p = ns. However, each group produced varying levels of knowledge. Stakeholders had the highest percentage of overall correct responses (M = 87.5%, SD = 18.00), followed by graduate students (M = 82.25%, SD = 0.12), and lastly, caregivers who had the least correct responses overall (M = 73.63%, SD = 0.20). See Table 1.



Caregivers’ average correctness score was the lowest (73.63%) whereas stakeholders’ average correctness score was the highest (87.5%) among all three groups. Graduate students had the largest range in correctness (min = 36%, max = 100%), evidencing a broad range of knowledge within the sample shown by the ASK-Q. Further, four of the 10 stakeholders in the sample scored a 100%, which reflects full, correct knowledge about ASC as measured by the ASK-Q. Below are results for all 11 items from the stigma subscale on the ASK-Q.

Objective Items from the ASK-Q Stigma Subscale (Items 1 – 8)

Item one stated, “all children with autism usually have problems with aggression”, which graduate students were the most informed that this statement was not true and were 86% correct while caregivers were the least informed with only 50% being correct about this statement. Item two stated, “autism is a result of a curse or evil eye put upon/inflicted on the family”. Both graduate students and stakeholders were 100% correct that this is untrue, yet 12% of caregivers believed that autism could be caused by a curse on the family. Item three stated, “autism is caused by God or a supreme being”, which, again, graduate students were the most correct in recognizing this is untrue with 93% responding correctly to this item, and stakeholders were the least informed with 20% reporting that a supreme being caused autism. Item four stated, “autism is due to cold, rejecting parents”, and both the caregivers and stakeholders knew this was not true and were 100% correct in their responses to this item while 93% of graduate students were correct and also recognized this was not true.

Item five stated, “autism is preventable”, and 100% of stakeholders were correct and appropriately informed this statement is untrue. However, only 36% of graduate students and 44% of caregivers were correct, while the remaining participants were incorrect – reporting ASC is preventable. Item six stated, “autism happens mostly in middle class families”. Stakeholders were the most informed and 100% correct in their responses to this item followed by caregivers (88%) and then graduate students (79%). Item seven stated, “it is important that all children diagnosed with autism receive some form of special education services at school”, which all graduate students were informed this item was true and their responses were 100% correct followed by caregivers (88%) and then stakeholders (70%).

Item eight stated, “most children with autism are extremely impaired and cannot live independently as adults”, which is not true. There was a statistically significant difference among the three groups’ knowledge on this item, X2(2) = 6.177, p = .046. Results showed that stakeholders were most informed (90%) while caregivers were least informed (50%) that individuals with ASC can live independently and are not always extremely impaired.

Subjective Items from the ASK-Q Stigma Subscale (Items 9 – 11)

Item nine stated, “autism holds a social stigma in some communities”, and results showed all graduate students, all stakeholders, and 81.3% of caregivers were in full agreement of this statement. Item 10 stated, “in some communities, people would feel ashamed if someone in their family was showing symptoms of autism”, and results showed that only two participants, specifically caregivers, agreed with this statement by responding with ‘yes’. Item eleven states, “there is a negative opinion toward children diagnosed with autism in some communities”, and reports showed that all 40 participants unanimously agreed that there is a negative opinion toward children diagnosed with ASC in some communities. See Table 2.

Discussion

Recognizing the detrimental effects of stigma, it is important to gauge ASC stigma, especially within LMICs, to focus efforts on dismantling its existence. As formerly evidenced, stigma has various negative consequences (Link & Phelan, 2006; Tilahun et al., 2016; Papadopoulos, 2018), which begs for effective ways to reduce ASC stigma in vulnerable communities, such as those that are less knowledgeable. Therefore, the purpose of the current study was to spotlight the ASC stigma that exists within a sample of Zambian community members and to also suggest methods to dismantle ASC stigma.

One of the first steps to combat ASC stigma is to educate communities about ASC - especially through the lens of the autistic experience. As evidenced across the groups’ data, with the exception of four stakeholders who scored 100%, participants (n = 36) did not fully understand the scope of ASC. While the sample was smaller, this is initial supportive evidence about limited ASC knowledge in Zambia that corroborates former findings stating 79% of Zambian university students had not heard of ASC (Chansa-Kabali, Nyoni & Mwanza, 2019). The findings from the current study pertaining to the ASK-Q stigma subscale are further explained below, which provide a basis and glimpse of ASC stigma in Zambia.

Item 1: “All children with autism have problems with aggression”

Often, children with ASC express emotion in a binary manner, which could result in the perception that children with ASC become easily upset should their routines be altered or if they dislike a task or activity (Mazefsky, 2015). Because children with ASC have challenges with their social and communication skills, it is often difficult for them to regulate their emotions as compared to their peers with typical development. While children with ASC can have aggressive exhibitions (Kanne & Mazurek, 2011), it is not true of all children with ASC. Thus, aggression is not a guaranteed trait in all children with ASC. This misconception of aggression in ASC could contribute to ASC stigma within the community, and it is important to override such beliefs with appropriate education.

Item 5: “Autism is preventable”

This item postulates that autism is a preventable disorder, which the correct answer is “no”. To date, there is no identified singular cause of ASC in order to prevent it. However, research has shown sufficient evidence to suggest that certain autism cases are genetically based, with over 1,000 genes associated with autism (National Institute of Health, 2020). Attributions of ASC include miswiring between different brain regions and chromosomal variations (Bhat et al., 2014). ASC ideologies mentioned earlier such as parental negligence, marital conflicts, and witchcraft (Drake, 1996) are incorrect causal explanations of ASC – although these beliefs are still held. Caregivers who reportedly believed that ASC is preventable might carry the burden that there is a person or circumstance responsible for their children’s conditions. This thought can be reversed by sharing scientifically-rooted evidence in a culturally-sensitive manner about the known etiological origins of ASC. ASC being thought of as preventable needs to be discredited, as carrying this thought forward fuels ASC stigma.

Item 8: “Most children with autism are extremely impaired and could not live independently as adults”

Research has shown that an early diagnosis in conjunction with proper intervention services (i.e., environmental, familial, and scholastic support alongside relational-based parental education), children with ASC can live enriched lives. Some individuals with ASC even excel beyond the general population. For example, approximately 10% of all individuals with ASC possess “savant skills,” which indicates a brilliance within one or multiple subjects (e.g., mathematical calculations, enhanced memory power, artistic/musical ability; Fein et al., 2013). The current study showed that stakeholders and graduate students were most informed about the capabilities of individuals with ASC while caregivers were the least informed. Caregivers’ reports on this item reflect a narrowed perspective in individuals with ASC being able to thrive. Further, as mentioned earlier and supported by these data, when caregivers experience affiliate stigma coupled with the belief that their children may never improve and instead expect lifelong impairment, children face a greater risk of further delay (Kinnear et al., 2016; Bauminger & Kasari, 2000; Bauminger et al., 2003).

In contrast to these Zambian caregivers’ perspectives, to further emphasize the potentials of children with ASC, former research has shown a variety of elements that lessen ASC traits and improve children’s abilities [e.g., increased parent-child interactions, social-communication therapy (Bhat et al., 2014; Ingersoll & Wainer, 2013)]. Ultimately, caregivers of children with ASC can find consolation knowing that their children can improve their skills and strengthen their abilities with intervention (Dawson, 2008; Pierucci, 2015; Schreibman et al., 2015), which can propel their children to be more independent in adulthood. However, families living in LMICs, such as Zambia, have a dearth of ASC intervention services and trained professionals (Einfeld et al., 2011; Tekola et al., 2017). Consequently, the caregivers’-imposed limitations of their children’s abilities are also a depiction of the realities that families face respective of ASC service scarcity in LMICs.

Items 9 through 11

The final three survey items were subjective questions about community opinions toward children with ASC, feelings of shame experienced should a family member be diagnosed, and if it is believed that autism holds a social stigma. Approximately 93% of all participants indicated disagreement with the statement that “in some communities, people would feel ashamed if someone in their family was showing signs of autism”. A potential explanation for this response is that some children are locked away and not assimilated into the community (Pierucci, 2018), so individuals could be avoiding that feeling of shame. Further, given all stakeholders, all graduate students, and most caregivers (i.e., 13 out of 16) disagreed that people would feel shame, this could be explained by their training, professional positions, and lived experiences having desensitized them that ASC shame does exist. However, there was unanimous agreement pertaining to the item that negative opinions toward children diagnosed with autism exists in some communities. This illustrates an immense need for community understanding of ASC and having access to educational ASC resources, which would aid in reducing shame and increasing acceptance of ASC.

Strengths and Limitations

The sample within this study was unique and diversified given data included community perspectives of caregivers, stakeholders, and graduate students who provided insight about ASC stigma (e.g., cold parenting, God influenced developmental delays in children, if the children will be impaired for a lifetime, or if independence is out of reach). It is reasonable to presume that the current sample, comprised of caregivers who have a personal connection to an individual with ASC; stakeholders advocating for children in need of resources; and psychology graduate students studying child development and neurodiversity, likely yielded higher scores than the average community citizen. Each group in the sample had a connection to the studied topic – ASC; thus, it is probable the results observed are not generalizable to the population in Lusaka. Further, absence of statistically significant results, with the exception of group differences found on item 8, was likely due to a small sample size limiting statistical power. Nonetheless, item level differences demonstrated variations between each group’s ideology, experience, and/or education level pertaining to ASC.

Future Directions

Researchers should consider coordinating with local, influential individuals in LMICs to implement ASC educational workshops to bring factual knowledge about ASC into the communities throughout LMICs. This dissemination of ASC knowledge, through a culturally-sensitive delivery, can begin to rewrite the narratives about ASC etiologies and ideologies – optimally leading to generational changes. Additionally, workshops should aim to normalize ASC in order to reduce ASC stigma given that stigmatizing individuals with ASC and their caregivers makes their lives more difficult (Kinnear et al., 2016). Potential barriers for the success of disseminating knowledge and implementing informational workshops include funding, local sustainability, and cultural-sensitivity. LMICs should aspire to measure existing ASC stigmas in their communities including diverse samples and target the sources of stigmas. Once sources of stigma are identified, effective methods to reduce stigma should be created and implemented by local organizations, systems, and community members.

Conclusion

This study showcases that ASC stigma exists in Zambia – even with a small, diversified sample – given the 40 participants indicated that negative opinions exist in their communities toward children diagnosed with ASC. Importantly, this is the first study to document the status of ASC stigma in Zambia, which has important implications for Zambian policies and systems (e.g., healthcare, education). It is important to be informed about the presence of ASC stigma in order to address (i.e., attempt to reduce) the existing stigma. Furthermore, to address ASC stigma, future research should specifically focus on making communities aware of ASC and its symptomatology in order for this knowledge to lead to action (Graham & Tetroe, 2011). In other words, this action could generate less ASC stigmatized communities through knowledge translation (i.e., applying the knowledge; Straus et al., 2009). In summary, it is important that communities are knowledgeable about the known origins and symptomatology of ASC in order to shift and redirect dated mindsets (e.g., debunk that family curses cause ASC), which contribute to stigmatization. Optimally, children with ASC would encounter fewer barriers in their abilities to succeed if members of their communities, and their own families, have empirically supported knowledge about ASC and react with support by healthily accepting their ASC.

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Appendix A

Stigma Subscale from the ASK-Q

Items

Yes

No

I don't know

1. All children with autism usually have problems with aggression

2. Autism is a result of a curse or evil eye put upon/inflicted on the family

3. Autism is caused by God or a supreme being

4. Autism is due to cold, rejecting parents

5. Autism is preventable

6. Autism happens mostly in middle class families

7. It is important that all children diagnosed with autism receive some form of special education services at school

8. Most children with autism are extremely impaired and cannot live independently as adults

9. Autism holds a social stigma in some communities

10. In some communities, people would feel ashamed if someone in their family was showing symptoms of autism

11. There is a negative opinion towards children diagnosed with autism in some communities

Note. This subscale of 11 items was extracted from the original 55-itemed ASK-Q (Harrison, Bradshaw, Naqvi, Paff & Campbell, 2017). Items one through 8 are objective and were scored for correctness whereas items nine through 11 are subjective and frequencies of participants’ responses were reported.



Authors' Biographies

Alexandra Pearson, role: research assistant and project assistant; Jillian M. Pierucci, role: primary implementer/team lead and principal investigator; Gabriela Aquino, role: research assistant and project assistant; Monica Perez, role: implementer assistant and project assistant; Sylvia Mwanza-Kabaghe, role: implementer assistant and participant recruiter; Francis Sichimba, role: implementer assistant and participant recruiter; Haatembo Mooya, role: implementer assistant and participant recruiter. The authors state that there are no conflicts of interests.

Final Note

This research was funded by the Edward and Linda Speed Peace and Justice Fellowship.

 

International Journal of Disability, Community & Rehabilitation
Volume 19, Issue 1
www.ijdcr.ca
ISSN 1703-3381