The Dilemma of Cure

2020 ◽  
pp. 189-213
Author(s):  
Elizabeth Fein
Keyword(s):  
Social Support ◽  
High Risk ◽  
Autism Spectrum ◽  
The Self ◽  
Daily Activities ◽  
Autism Spectrum Conditions ◽  
Clinical Ethnography ◽  
Ethical Conflicts ◽  
Prevention And Cure

This chapter examines the ethical questions surrounding the cure and prevention of autism as they are negotiated by families affected by Asperger’s syndrome and related autism spectrum conditions. Through interviews with youth on the autism spectrum and their families, as part of a clinical ethnography of these families at home, in school, and within their communities, the chapter argues that the seemingly insoluble quality of ethical conflicts around neurodiversity is underpinned by individualization: a model of the self as sharply bounded and defined exclusively by internal traits. Within many of these families, autism was understood to shape the motivations, desires, interests, and daily activities that constituted the identities of these youth, making the removal of autism feel like an erasure of their personhood. At the same time, in a context where they are expected to win their social roles through such individual attributes, the lack of social support available to these youth put them at high risk for social abandonment and invisibility as adults, especially outside of their parental households. Prevention and cure thus come to feel like both a profound violation and an ethical necessity.

Hardwired

2020 ◽  
pp. 108-132
Author(s):  
Elizabeth Fein
Keyword(s):  
Support Groups ◽  
Neural Plasticity ◽  
Personal Characteristics ◽  
Autism Spectrum ◽  
The Self ◽  
Autism Spectrum Conditions ◽  
Late Modernity ◽  
Clinical Ethnography ◽  
Self Organized ◽  
Molecular Modulation

Sociologist Nikolas Rose has posited the emergence of a “neurochemical self” organized around the assumption that our personal characteristics, moods and desires arise from our brain chemicals, and are amenable to molecular modulation through psychiatric drugs. Drawing on clinical ethnography of a series of support groups run by and for individuals diagnosed with Asperger’s syndrome and other autism spectrum conditions, this chapter charts the emergence of a contrasting model of the “neurostructural” self, oriented around the concept of developmental disability and its presumption of fixed innateness and lifelong course. In rejecting the demands for flexibility and adaptation entailed in neurochemical selfhood, this counterdiscourse of hardwired genetic and synaptic brain structure functions as a form of resistance against the demand for constant fluidity and change that characterizes late modernity. However, its core assumptions of a self that is fixed and inalterable are increasingly threatened by the ascendance of neural plasticity as a new mode of both conceptualizing and intervening on the self.

The Sword in the Soul

2020 ◽  
pp. 214-238
Author(s):  
Elizabeth Fein
Keyword(s):  
Video Games ◽  
Lived Experience ◽  
Comic Books ◽  
Autism Spectrum ◽  
Speculative Fiction ◽  
The Self ◽  
Autism Spectrum Conditions ◽  
Neutral Form ◽  
Clinical Ethnography ◽  
A Value

This chapter focuses on how youth diagnosed with Asperger’s syndrome and related autism spectrum conditions make sense of their own condition and its contradictions. Drawing on clinical ethnography in spaces where youth on the spectrum engage in shared creative practices, the chapter argues that medicalized discourses of autism as either a pathogen-like disease or a value-neutral form of neurogenetic hardwiring are insufficient to conceptualize the experiences of these youth. Autism, as they describe it, feels both intimate and alien, brings both cherished strength and terrifying vulnerability, and constitutes their sense of identity while also profoundly disrupting it. But the dominant ways of talking about autism, grounded in medical understandings of the self as sharply bounded and continuous, separate these aspects of lived experience from each other, casting them as radically incompatible. Instead, these youth playfully reinvent their autobiographies through an alternative shared mythology of mutant antiheroes with permeable selves, drawn from fantasy media, video games, comic books and other speculative fiction. In doing so, they generate new ways of coming to terms with the complexities of their condition.

Mediating Effects of Social Support on Caregiver Burden and Quality of Life for Compound and Noncompound Caregivers

2020 ◽  
pp. 104438942094722
Author(s):  
Christina N. Marsack-Topolewski
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Caregiver Burden ◽  
Adult Child ◽  
Autism Spectrum ◽  
Mediating Effect ◽  
Informal Social Support ◽  
More Care ◽  
The Relationship

This study sought to explore the mediating effect of informal social support on the relationship between caregiver burden and quality of life among compound and noncompound caregivers. Parents ( N = 320) completed a web-based survey aimed to examine effects of caring for an adult child with autism spectrum disorder. Results of the mediation analysis suggested that informal social support partially mediated the relationship between caregiver burden and quality of life for both groups. Informal social support appears to be more impactful for noncompound caregivers compared with compound caregivers based on a greater reduction in explained variance. These results highlight the importance of informal social support as caregivers juggle ongoing challenges to provide care to one or more care recipients.

scholarly journals Association between Child Diarrhea and Maternal Depression

2013 ◽  
Vol 5 (1) ◽  
pp. 14-20 ◽  
Author(s):  
Grace Milad ◽  
Saria Izzeldin ◽  
Fahmida Tofail ◽  
Tahmeed Ahmed ◽  
Maliha Hakim ◽  
...  
Keyword(s):  
High Risk ◽  
Maternal Depression ◽  
Statistical Significance ◽  
Urban Slum ◽  
The Self ◽  
Diarrheal Incidence ◽  
Self Reporting Questionnaire ◽  
The Relationship ◽  
Diarrheal Morbidity

CORRECTION: The following authors were added to this paper on 11/10/2013: Grace Milad; Saria Izzeldin; Tahmeed Ahmed; William A. Petri.The author Mohammad Ibrahim Khalil was changed to Ibrahim KhalilBackground: Maternal depression has been found to be associated with increased diarrheal incidence and childhood malnutrition. Objective: The purpose of the present study was to observe whether the Self- Reporting Qustinative (SRQ-20) questionnaire was sensitive enough to pick-up the depressive symptoms of mothers in the urban slum community. Methodology: This was a pilot study in a Dhaka Shantytown and women were interviewed to examine the relationship between maternal depression and their children's diarrheal morbidity. In addition to other socio-demographic information, the Self-Reporting Questionnaire (SRQ-20) was used to screen for maternal depression. Result: A total number of 55 women were interviewed to examine fifty-one percent of mothers scored within the high-risk psycho-morbidity group, suggesting depression. High SRQ scores significantly correlated with poor marital relationships (Regression coefficient ± standard error =-0.624+0.225, p=0.008; 95%CI:-1.076, -0.172). High-risk mothers breastfed for a shorter duration than low-risk mothers (3.4 vs. 4.4 months, p=0.35) and their children had more diarrheal episodes (2 episodes vs. 1, p=0.18), although these differences did not show statistical significance. Conclusion: Depression is common among mothers in urban slums and that a well-designed large study is required to further explore the provocative relationship between maternal depression and child diarrhea with subsequent malnutrition to improve the quality of life of those at risk. DOI: http://dx.doi.org/10.3329/jssmc.v5i1.16199 J Shaheed Suhrawardy Med Coll, 2013;5(1):14-20

scholarly journals Interaction of anxiety, depression and hypertension on quality of life in patients with gynecological tumor and the moderating effect of social support

2021 ◽  
Author(s):  
ZhiHui Gu ◽  
Hui Wu
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Gynecological Cancer ◽  
Moderating Effect ◽  
The Self ◽  
Self Rating ◽  
Gynecological Tumor ◽  
Interaction Term ◽  
Anxiety Depression

Objective: To explore the effect of anxiety, depression and hypertension on quality of life (QOL) of patients with gynecological tumor and the interaction among them, and the moderating effect of social support. Design: Cross-sectional design Setting: December 2019 to July 2020, the COVID-19 outbreak phase. Population or Sample: A total of 695 gynecological cancer patients were collected. Methods: The study used the Self-Rating Anxiety Scale (SAS), the Self-Rating Depression Scale (SDS), the Functional Assessment of Cancer Therapy Genera tool (FACT-G), and the Multidimensional Scale of Perceived Social Support Scale (MSPSS). Regression analysis and the simple slope analysis were conducted. Results: QOL of patients with anxiety and hypertension had seriously deteriorated [OR=10.297, 95%CI (5.647-18.775)]. And QOL of patients with depression and hypertension also had seriously deteriorated [OR=11.846, 95%CI (6.597-21.271)]. Calculated by crossover analysis, the synergy index, attributable proportion and relative excess risk due to interact of anxiety and hypertension were1.698,0.371 and 3.822, and the correlation index of interaction between depression and hypertension were 1.475, 0.295, and 3.493. The Social Support &Depression interaction term and Social Support &Anxiety interaction term were negatively correlated with QOL (p<0.01), and explained an extra 5.7% and 5.6% of the variance respectively (p<0.01). Conclusion: Anxiety, depression and hypertension have interaction on the QOL of patients with gynecological tumors. Social support can significantly moderate the relationship between depression, anxiety and QOL respectively. Funding: National Key R&D Program of China (Grant #2018YFC1311600). Keywords: quality of life, depression, anxiety, social support, hypertension, moderating effect

scholarly journals The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability

Autism ◽  
2017 ◽  
Vol 22 (6) ◽  
pp. 703-711 ◽  
Author(s):  
Lauren Bishop-Fitzpatrick ◽  
Carla A Mazefsky ◽  
Shaun M Eack
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Autism Spectrum Disorder ◽  
Perceived Stress ◽  
Intervention Development ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Adults With Autism ◽  
Community Volunteers

Identifying modifiable correlates of good quality of life in adults with autism spectrum disorder is of paramount importance for intervention development as the population of adults with autism spectrum disorder increases. This study sought to examine social support and perceived stress as potential modifiable correlates of quality of life in adults with autism spectrum disorder. We hypothesized that adults with autism spectrum disorder without co-occurring intellectual disabilities ( N = 40; aged 18–44 years) would report lower levels of social support and quality of life than typical community volunteers who were matched for age, sex, and race ( N = 25). We additionally hypothesized that social support would buffer the effect of perceived stress on quality of life in adults with autism spectrum disorder. Results indicated that adults with autism spectrum disorder reported significantly lower levels of social support and quality of life than matched typical community volunteers. In addition, findings showed significant direct effects of social support and perceived stress on quality of life in adults with autism spectrum disorder. Social support did not buffer the effect of perceived stress on quality of life. Interventions that teach adults with autism spectrum disorder skills to help them better manage stress and cultivate supportive social relationships have the potential to improve quality of life.

scholarly journals Imitation and recognition of facial emotions in autism: a computer vision approach

2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Hanna Drimalla ◽  
Irina Baskow ◽  
Behnoush Behnia ◽  
Stefan Roepke ◽  
Isabel Dziobek
Keyword(s):  
Emotion Recognition ◽  
Facial Expressions ◽  
Autism Spectrum ◽  
Autism Spectrum Conditions ◽  
Group Differences ◽  
Emotional Expressions ◽  
Adults With Autism ◽  
Recognition Of Facial Expressions ◽  
Computer Based

Abstract Background Imitation of facial expressions plays an important role in social functioning. However, little is known about the quality of facial imitation in individuals with autism and its relationship with defining difficulties in emotion recognition. Methods We investigated imitation and recognition of facial expressions in 37 individuals with autism spectrum conditions and 43 neurotypical controls. Using a novel computer-based face analysis, we measured instructed imitation of facial emotional expressions and related it to emotion recognition abilities. Results Individuals with autism imitated facial expressions if instructed to do so, but their imitation was both slower and less precise than that of neurotypical individuals. In both groups, a more precise imitation scaled positively with participants’ accuracy of emotion recognition. Limitations Given the study’s focus on adults with autism without intellectual impairment, it is unclear whether the results generalize to children with autism or individuals with intellectual disability. Further, the new automated facial analysis, despite being less intrusive than electromyography, might be less sensitive. Conclusions Group differences in emotion recognition, imitation and their interrelationships highlight potential for treatment of social interaction problems in individuals with autism.

scholarly journals Automedicação em Gestantes de Alto Risco: Foco em Atenção Farmacêutica

2018 ◽  
Vol 20 (1) ◽  
pp. 50
Author(s):  
Sandra Larissa Freitas dos Santos ◽  
Cinara Vidal Pessoa ◽  
Maria Luíza Bezerra de Macedo Arraes ◽  
Karla Bruna Nogueira Torres Barros
Keyword(s):  
Clinical Trials ◽  
High Risk ◽  
Pregnant Women ◽  
Cross Sectional Study ◽  
The Self ◽  
Sectional Study ◽  
Self Medication ◽  
Teratogenic Effects ◽  
Cross Sectional

A gestação oferece barreiras éticas e técnicas à realização de ensaios clínicos, e para isso a farmacovigilância tem investigado e avaliado os efeitos decorrentes do uso de medicamentos. O estudo teve como objetivo verificar o índice da automedicação em foco na Atenção Farmacêutica a gestantes de alto risco atendidas na Policlínica Francisco Carlos Cavalcante Roque no município de Quixadá-CE. Tratou-se de um estudo observacional, transversal, consistindo em uma abordagem predominantemente quantitativa. As gestantes eram, na maioria, casadas, com faixa etária entre 29 a 39 anos, e as doenças predominantes foram Infecção (Urinária, vaginal e intestinal) e Hipertensão. Quanto a idade gestacional, apresentaram uma faixa de 8 a 39 semanas com média de 24 semanas. O uso de cigarro foi afirmado por 6,25% das gestantes, porém nenhuma relatou o uso de drogas. A utilização de medicamentos durante a gravidez pela prática da automedicação foi relatada por 33,75% gestantes, e três delas afirmaram sentir-se mal ao tomarem os medicamentos: Dipirona, Ibuprofeno e Dimenidrinato. Do total de 33 medicamentos usados pela automedicação 94% eram em forma de comprimidos, utilizados para queixas como cefaleia, êmese e náuseas, sendo que a indicação por conta própria. Portanto, sugere-se orientação farmacêutica a gestantes de alto risco com o intuito de minimizar efeitos teratogênicos e proporcionar melhoria em sua qualidade de vida.Palavras-chave: Gravidez de Alto Risco. Automedicação. Uso de Medicamentos. Abstract Pregnancy offers ethical and technical barriers to conducting clinical trials, and for this reason the pharmacovigilance has investigated and evaluated the effects arising from the use of medicines. The study had as objective to verify the self-medication rate in focus on pharmaceutical attention to high-risk pregnant women attended at Policlínica c Francisco Carlos Cavalcante Roque in the municipality of Quixadá-EC. This was an observational, cross-sectional study, consisting of a predominantly quantitative approach. The pregnant women were, in the majority, married, aged between 29 to 39 years, and the predominant diseases were infection (vaginal, urinary and intestinal) and hypertension. Regarding the gestational age, they presented a range from 8 to 39 weeks, with an average of 24 weeks. The use of cigarettes was affirmed by 6.25% of pregnant women, but none reported the use of drugs. The use of medications during pregnancy through the self-medication practice was reported by 33.75% of pregnant women, and three of them said the felt bad when taking the medicines: Dipyrone, Ibuprofen and Dimenhydrinate. Of the total of 33 medications used by self-medication, 94% were in the form of pills, used for complaints such as headache, vomiting and nausea, being the indication for their own account. Therefore, pharmaceutical orientation is suggested for high-risk pregnant women with the aim of minimizing teratogenic effects and provide improvement in their quality of life.Keywords: Pregnancy, High-Risk. Self Medication Drug Utilization.

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