Examining Maternal Psychological Recollections of Children Diagnosed With Autism Spectrum Disorders

Mothers of children diagnosed with autism spectrum disorders (ASDs) experience symptoms of depression, anxiety, stress, and despair stemming from the challenges of raising offspring with behavioral, communicative, and socioemotional impairments. Researchers have shown that children diagnosed with ASDs exhibit symptoms within the first year of life (early-onset), while some exhibit normal development until the second year (regressive-onset), and some exhibit normal development until the second year but display abnormalities in the first year (mixed-onset). Despite the wealth of research on ASDs, there are few examinations of ASD symptom onset groups and the impact of those onset groups on parental psychological experiences: stress, impact on family, and future hopes. This research compared the retrospective parent reports of 31 mothers across ASD onset groups (early-onset, n = 16, regressive-onset, n = 8, and mixed-onset, n = 7) with psychological experiences using Impact on Family Scale, the Vicarious Futurity Scale, and the Parent Stress Inventory. A one-way multivariate analysis of variance assessed the relationship between maternal groups and psychological experiences. No significant differences were found between the groups. However, significant correlations were found between stress, family impact, and perceived hope for the future. Mothers reporting high levels of stress also reported high levels of family impact and low levels of perceived hope for the future. There is a need for increased emotional support for mothers of children diagnosed with ASDs. It should be a standard practice for clinicians, upon diagnosing children with ASDs, to refer mothers and caregivers to therapy or support groups. This may alleviate key aspects of family stressors

Help-Seeking and Stigma Experienced by Arab American Immigrant Parents of Children with Autism

Because of cultural and religious norms and associated stigma, some parents of a child with a mental illness or developmental disorder are hesitant to seek help for their child. The purpose of the study is to better understand how religious and ethnic culture reinforces stigma and its impact on a parent’s decision to seek help. This phenomenological qualitative study was conducted with Muslim Arab American immigrant parents, including first and second generations, in the United States who had a child diagnosed with an autism spectrum disorder (ASD) within the last 15 years. Semistructured interviews were conducted to gather data exploring these parents’ lived experiences and perceptions of stigma from their family and community. The social stigma theory provided a lens for understanding how culture can affect the decision to seek help for a child with an ASD. Findings of this study indicated that participant parents had an emotional experience coming to terms with the diagnosis of their child, difficulties telling family and community, and determining how to get the help they needed for their child. Significant positive social change areas relating to this study may include increased information and awareness of current difficulties for both consumers and providers of care for children with ASD in a group within the United States that has not significantly been studied

Parents' perceptions of the impact of the home environment on youth living with an Autism Spectrum Disorder

Background: The prevalence of autism spectrum disorders (ASD) is estimated at 1% worldwide. People living with ASDs are often very sensitive to environmental stimuli (e.g., noise). These stimuli influence the person-environment interaction in a positive or negative way, and an excess of stimuli could cause inappropriate or unexpected behavioural responses (e.g., crisis). The Model of Competence, explaining the person-environment relationship, is the conceptual framework chosen to guide this study. The objective is to explore parents’ perceptions regarding the influence of the home environment characteristics on persons living with ASD. Methods: A qualitative interpretive description design was used. Parents of youth with an ASD who lived in the family home until at least 16 years old participated in the study. Focus groups were conducted until data saturation. A thematic analysis was performed. Results: The elements impacting people living with an ASD are grouped under two themes: Non-human Environment and Human Environment. Although these elements have various effects on this population, noise, excess visual stimuli, unexpected visitors, and changes in the environment seem to be disturbing elements. Natural light, nature, a safe environment, and stability in the environment seem to have positive effects. Discussion: Even though the home environment is usually a safe and stable environment, these elements emerged as fundamental. Thus, the repercussions of this in other environments that are difficult to control should be something to reflect on. Conclusions: Identifying these elements and their effects allows for a better understanding of the interaction between the person with ASD and their environment, both human and non-human, guiding professionals in their interventions.Peer Reviewe

The Role of Information and Communication Technology in Autism Care Case Study: Sudan

abstract: This research aims to serve as a starting point to the exploration of the current status of autism in Sudan and how to best utilize available Information and Communication Technology (ICT) to educate and support parents and educators. Currently, there is no official published data on the prevalence of autism in Sudan or the related available services and facilities. To attempt to expand upon the limited existing knowledge, the researcher collected all available data and information through Sudanese Facebook groups and pages. The research was observational in nature. Findings indicated that raising a child with Autism Spectrum Disorder (ASD) in Sudan can be rather challenging, particularly for parents who do not have easy access to ASD treatment. In general, parents in this study expressed minimal satisfaction with the available treatments and services that their children were receiving. Parents repeatedly addressed problems regarding a lack of access, the overwhelming expense, and the need for more awareness and acceptance of autism within Sudanese society. In response to these issues, some of the parents formed small support groups and met regularly to share experiences and discuss solutions. Additionally, some parents are creating discrete Facebook pages to help normalize autism and combat misinformation.Dissertation/ThesisMasters Thesis Global Technology and Development 201

Marital Adjustment in Parents of Multiple Children with Autism Spectrum Disorders

The current study investigated the relationship between raising multiple children with Autism Spectrum Disorders (ASD) and martial adjustment and whether perceived social support moderates this relationship. The sample (n = 115) consisted of 77 parents of a single child diagnosed with an ASD and 44 parents of 2 or more children diagnosed with an ASD. There was no significant difference in martial adjustment between the parents of single versus multiple children with ASDs and no significant relationship between number of children with an ASD within a family and marital adjustment. Although the main hypotheses were not supported, data from experimental questions indicated that a majority of participants believed their marriage was affected by their child\u27s ASD diagnosis and most rated this effect negatively. Further, for parents of multiple children with ASDs, the rating of degree of impact upon their marital relationship after the first diagnosis was significantly positively related to their marital impact rating following the second diagnosis, suggesting that parents who view the effects of the first diagnosis as negative are likely to view the effects of the second diagnosis negatively as well. Since there was no a significant relationship between number of children with and ASD and marital adjustment, social support was not tested as a moderator. However, there was a significant positive relationship between dyadic adjustment and perceived social support. Further research examining the effects of parenting multiple children with ASDs is warranted

The New Scarlet Letter A: An Exploration of the Power of Online Informational Websites to Influence and Brand Those Impacted by Autism Spectrum Disorders

Technical communication is often perceived by the public as containing objective information that is supported by scientific data. Audiences of such products are unaware of the rhetoric employed within its content that works to perpetuate social constructions of dominant ideologies, including digital texts such as informational websites. This article presents a comparison of the rhetoric employed on two national websites, Autism Speaks and Generation Rescue that convey similar information on Autism Spectrum Disorders (ASDs), but present ASDs differently in terms of language, tone, and lens. Through the acknowledgement of these differences, I posit that web sites affiliated with the medical/scientific community such as Autism Speaks work to perpetuate damaging biases toward and prejudices about the ASD community, while operating under the commonplace of being objective. This article argues for identifying, interrogating, and tearing down the walls of marginalization and prejudice that continue to stand between society and those impacted by disability. These walls are strengthened by the refusal to acknowledge the voices of the community, those with lived experiential information regarding the world of ASDs. Thus, instead of perpetuating the rhetoric that those with disabilities should work to overcome and accommodate, I encourage technical communicators to interrogate their normalizing practices in order to challenge hegemonic notions of disability as a means to project positive imagery that could result in increased notions of possibility and recognition of those with ASDs

Help-Seeking and Stigma Experienced by Arab American Immigrant Parents of Children with Autism

Because of cultural and religious norms and associated stigma, some parents of a child with a mental illness or developmental disorder are hesitant to seek help for their child. The purpose of the study is to better understand how religious and ethnic culture reinforces stigma and its impact on a parent’s decision to seek help. This phenomenological qualitative study was conducted with Muslim Arab American immigrant parents, including first and second generations, in the United States who had a child diagnosed with an autism spectrum disorder (ASD) within the last 15 years. Semistructured interviews were conducted to gather data exploring these parents’ lived experiences and perceptions of stigma from their family and community. The social stigma theory provided a lens for understanding how culture can affect the decision to seek help for a child with an ASD. Findings of this study indicated that participant parents had an emotional experience coming to terms with the diagnosis of their child, difficulties telling family and community, and determining how to get the help they needed for their child. Significant positive social change areas relating to this study may include increased information and awareness of current difficulties for both consumers and providers of care for children with ASD in a group within the United States that has not significantly been studied

Social Distance, Stigma, and Help-Seeking: A Comparison of Lay and Professional Conceptualizations of Autism in the Southern US

Understanding stigma, help-seeking and barriers to treatment for persons with Autism Spectrum Disorder (ASD) is essential for informing interventions toward increased relevance and utility. An array of sociocultural and individual factors can influence lay beliefs and behavioral responses to ASD, including stigma and social distancing (i.e., preference for distance from autistic individuals). It is important to consider the Explanatory Models of ASD among helping professionals (e.g., health care, education) as they are likely touchstones along the help-seeking pathway for children with ASD. The purpose of this study was twofold: 1) to explore factors in the southern United States associated with different aspects of the EM, namely how background factors (demographics), knowledge, and familiarity with ASD are related to social distancing, autism stigma, and help-seeking; and 2) to elicit and compare beliefs about ASD among groups of lay persons and professionals (i.e., healthcare professionals, teachers) on the frontline of initiating the help-seeking pathway. Quantitative surveys (n = 343) and open-ended data were collected from individuals in the southern United States. Quantitative results indicated: increased knowledge was associated with lower levels of stigma and social distancing; more preference for social distance was associated with decreased help-seeking; more education and ASD knowledge were associated with increased help-seeking intentions. Similarly, the data suggests that individuals with higher levels of ASD knowledge were more likely to endorse positive attitudes towards help-seeking from professionals. Educators had more ASD knowledge than the lay community. However, educators were less likely to seek help from all sources on the measure of general help-seeking (GHSQ-V). Qualitative data indicated significant differences between groups in terms of causes and treatment of ASD. Educators and healthcare workers more frequently endorsed neurodevelopmental disorders as the cause of ASD-like symptoms compared to the lay community. While the lay community and healthcare professionals more frequently recommended psychological treatment, educators were more likely to suggest multiple, specific treatments. Overall, the present study indicated the importance of ASD knowledge and how that knowledge impacts each individual’s ability and willingness to provide access to the help-seeking pathway

Explanatory Models of Autism in Nigeria: Exploring Sociocultural Beliefs to Inform Systems of Care

Advancements in the diagnosis, understanding, and treatment of individuals with autism spectrum disorder (ASD) have yet to benefit children and families struggling with ASD in Nigeria and other African countries. Not only is there a scarcity of research on ASD in sub- Saharan Africa, but also a lack of mental health and special education services and a lack of understanding of the sociocultural considerations that must inform culturally responsive care. As such, this study explored the sociocultural conceptualizations of autism spectrum disorder (ASD) in Nigeria and how these conceptualizations affect the experiences and care of people with autism. The unique culturally patterned pathway with which Nigerians seek care can be examined utilizing Arthur Kleinman’s theory of the explanatory mode. Key components of explanatory models include etiology, social and cultural meaning, seriousness and course, fears, help seeking, and treatment. To explore Nigerian beliefs about ASD, a comprehensive literature review was conducted which included criteria for searching studies from Nigeria, Sub-Saharan Africa, and the U.S. Next, material was organized into Kleinman’s explanatory model framework in order to illuminate the sociocultural and lived experience through the help-seeking pathway, from recognition of the problem of ASD to treatment outcomes. Finally, case material gleaned from two key informant interviews was included to provide details and support for literature. The literature review was conducted by loose applications of the SPIDER tool, while the results were analyzed using explanatory models. Overall, this analysis suggests that there are major gaps in the research of ASD across Africa. In the case of Nigeria, there is evidence that negative beliefs about autism have contributed to failing help seeking patterns. Despite these inadequacies, therehave been significant efforts to create inclusive educational options that can create a more direct pathway to care. Providing educators and other stakeholders with the tools to educate their communities about autism will be a significant step towards the progress needed to transform the lived experiences of Nigerians with autism