Enacting autism: Immigrant family negotiations with nosology in practice

Abstract

This article describes how autism spectrum disorder is experienced in the context of immigrant families and how the meaning of this condition, proposed by professionals in the host country, is negotiated between families and healthcare providers. The study sample consists of 44 parents of different nationalities and their 35 children with autism spectrum disorder (ASD) living in a socioeconomically deprived neighborhood of Montreal, Canada. Individual parent interviews were audiotaped and transcribed for subsequent analysis. Results suggest that – although they may sometimes be a source of anxiety – the uncertainties regarding the etiology of ASD, as well as the gap between the explanatory models (EMs) proposed by host country professionals and the impressions of parents, seem to increase the capacity of families to resist the imposition of what they perceive as external categories. Parents perceived the day-to-day difficulties associated with their child's condition as a form of social exclusion that compromised their child's future and independence. These day-to-day difficulties were also described as directly affecting the parents' social life, constituting an important emotional and physical burden. When talking about their children, parents described the painfulness of their experiences, but also discussed how their autistic child had transformed and shaped their lives. Overall, these results show how the disease is “enacted” in the day-to-day life of parents; and suggest that such an embodied understanding of ASD may sometimes represent a form of re-appropriation of power by families faced with adversity.

Prevalence of anxiety and depression in parents of children with autism spectrum disorder during the first wave of the COVID-19 pandemic on Northeast Brazil

“…The results showed that the ASD group was significantly more exposed to environmental stressors; remained at home for longer periods of time and received less assistance on household tasks. Social distancing and the reference to lack of social support are environmental stressors that were already a part of ASD families before the pandemic 19 . On the other hand, the economic impact, the social distancing, the deprivation of outdoor activities, the risk of getting infected with the virus and the excess of media coverage and information are just a few potential factors that have been generating or aggravating symptoms such as anxiety, stress, fear, anger, guild, anguish, insomnia, feelings of loneliness and/or being trapped and depression in society 2 .…”

“…In December of 2019, cases of pneumonia associated with severe acute respiratory syndrome (SARS) were first reported in China, specifically at the Hubei province and Wuhan city. The Coronavirus Disease (COVID- 19) is caused by a new coronavirus, denominated SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) by the World Health Organization (WHO). Due to its high transmissibility, COVID-19 rapidly spread throughout Europe and to the rest of the world, causing the WHO to declare the outbreak a pandemic on March 11, 2020 1,2 .…”

Service access experiences of immigrant and refugee caregivers of autistic children in Canada: A scoping review

“…Implications of this comparison are discussed in subsequent sections. Twelve studies focused on specific cultural and ethnic groups [18, 20, 31-35, 37, 38, 44, 48, 51], while 13 studies examined the experiences of newcomers from a variety of ethnic and cultural groups [19,21,30,[41][42][43][44][45][46][47][48][49][50]. Additionally, eight studies included both Canadian-born and immigrant caregivers of autistic children as participants [17,34,36,[38][39][40][41]52].…”

“…Other methods used included field notes, focus groups, and critical personal narratives. Data were gathered in English in 18 studies [19, 21, 31-35, 39, 41-50], French in 10 studies [21, 30, 40-43, 45-47, 49], Spanish in five studies [21,42,43,47,49], Chinese dialect in three studies [20,50,51], Portuguese in two studies [42,43], Korean in two studies [32,33],…”

“…and Arabic in one study [50]. Several studies used interpreters for interviews conducted in other languages [31,42,43]; Luthra noted using interpretation services to assist participants with questionnaire completion [38]. The specific language being used by participants was not specified in five studies [17,18,36,37,52].…”