‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum

Autism ◽  
2020 ◽  
pp. 136236132095687
Author(s):  
Karen Fowler ◽  
Cliodhna O’Connor
Keyword(s):  
Mental Health ◽  
Parental Stress ◽  
Acute Stress ◽  
Social Stigma ◽  
Personal Characteristics ◽  
Autism Spectrum ◽  
Autism Diagnosis ◽  
The Everyday ◽  
Everyday Experiences ◽  
The Impact

Little previous research has elucidated the everyday experiences of autistic girls or their families. This study used qualitative in-depth interviews to explore mothers’ experiences of the diagnosis, presentation and impact of caring for a daughter with autism. Nineteen women with autistic daughters (aged between 7 and 18) participated in the research, which took place in Ireland. Thematic analysis identified six themes: What’s Going On?; Road to Acceptance; Beyond the Stigma of Autism; Autism: Like a Girl; Mothers Holding It All Together; and Mothers Roll Up Their Sleeves. The analysis suggests that the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress. However, these challenges were offset by the resilience of mothers, buttressed by pride in their daughters and support from other women. Results will inform the development of policy and practice that is sensitive to the lived realities of autistic girls and their families. Lay abstract Autism in boys has been well researched but very little is known about the everyday experiences of autistic girls or their families. Mothers’ views and insights can be very helpful in increasing knowledge around the unique demands of raising a daughter with autism. This study conducted interviews with Irish mothers to examine their own experiences regarding (a) getting an autism diagnosis for their daughter, (b) their daughters’ personal characteristics and (c) the impact of caring for a daughter with autism. The study suggests that the route to an autism diagnosis for girls in Ireland is made more difficult by delays and missed diagnoses, and often followed by inadequate supports. Mothers described autistic girls as presenting with social challenges and mental health difficulties. Many mothers experienced judgement from other parents and family members, acute stress and mental health struggles. However, these challenges were offset by mothers’ resilience, pride in their daughters and support from other women. The findings of this study highlight the importance of specific support for autistic girls and their families.

Age and gentrification in Berlin: urban ageing policy and the experiences of disadvantaged older people

2018 ◽  
Author(s):  
Meredith Dale ◽  
Josefine Heusinger ◽  
Birgit Wolter
Keyword(s):  
Older People ◽  
Urban Transformation ◽  
Economic Interests ◽  
Political Processes ◽  
Socially Disadvantaged ◽  
The Everyday ◽  
Disadvantaged Neighbourhoods ◽  
Everyday Experiences ◽  
The Impact ◽  
The City

Chapter 5 examines the impact of gentrification processes in Berlin, Germany, on the distribution of older people across the city as well as the everyday experiences of ageing in socially disadvantaged neighbourhoods. The chapter concludes with an overview of developments in the context of political processes, where urban transformation driven by economic interests generates growing conflict and contradiction with the needs of an ageing and increasingly less affluent population.

scholarly journals The ‘Everyday Work’ of Living with Multimorbidity in Socioeconomically Deprived Areas of Scotland

2014 ◽  
Vol 4 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Rosaleen O'Brien ◽  
Sally Wyke ◽  
Graham G.C.M. Watt ◽  
Bruce Guthrie ◽  
Stewart W. Mercer
Keyword(s):  
Mental Health ◽  
Everyday Life ◽  
Mental Health Problems ◽  
Health Problems ◽  
Socioeconomic Deprivation ◽  
Self Management ◽  
The Everyday ◽  
The Impact ◽  
Life Work ◽  
Deprived Areas

Background Multimorbidity is common in patients living in areas of high socioeconomic deprivation and is associated with poor quality of life, but the reasons behind this are not clear. Exploring the ‘everyday life work’ of patients may reveal important barriers to self-management and wellbeing. Objective To investigate the relationship between the management of multimorbidity and ‘everyday life work’ in patients living in areas of high socioeconomic deprivation in Scotland, as part of a programme of work on multimorbidity and deprivation. Design Qualitative study: individual semi-structured interviews of 14 patients (8 women and 6 men) living in deprived areas with multimorbidity, exploring how they manage. Analysis was continuous and iterative. We report the findings in relation to everyday life work. Results The in-depth analysis revealed four key themes: (i) the symbolic significance of everyday life work to evidence the work of being ‘normal’; (ii) the usefulness of everyday life work in managing symptoms; (iii) the impact that mental health problems had on everyday life work; and (iv) issues around accepting help for everyday life tasks. Overall, most struggled with the amount of work required to establish a sense of normalcy in their everyday lives, especially in those with mental–physical multimorbidity. Conclusions Everyday life work is an important component of self-management in patients with multimorbidity in deprived areas, and is commonly impaired, especially in those with mental health problems. Interventions to improve self-management support for patients living with multimorbidity may benefit from an understanding of the role of everyday life work.

scholarly journals COVID-19 Suicide Survivors—A Hidden Grieving Population

2020 ◽  
Vol 11 ◽  
Author(s):  
Sara Pinto ◽  
Joana Soares ◽  
Alzira Silva ◽  
Rosário Curral ◽  
Rui Coelho
Keyword(s):  
Mental Health ◽  
Help Seeking ◽  
Social Stigma ◽  
Complicated Grief ◽  
Health Staff ◽  
Suicide Survivors ◽  
Increased Risk ◽  
Mental Health Support ◽  
Health Support ◽  
The Impact

Present time has been dominated by the COVID-19 pandemic. People are grieving several non-death related situations: the loss of a job, of a status, of a role, of their life. Restrictive measures and uncertainty about the future makes individuals vulnerable to feelings of hopelessness and helplessness. Mental health support has been hindered and teams are reinventing themselves to reach people in need. Nevertheless, decompensation of previous psychiatric disorders, increasing levels of depression and anxiety, economical handicaps and fear of the infection, are prompting several cases of COVID-19 related suicides worldwide. Every suicide affects between 5 and 80 individuals, which are known as suicide survivors. Suicide grief is particularly challenging, with rates of complicated grief as high as 40%. Suicide survivors are at increased risk of developing depression, anxiety disorders and of suicidal behaviors. Moreover, feelings of guilt and shame, as well as social stigma, are major obstacles for them to reach form help. This article aims to review the existing literature on COVID-19 related suicides, complicated grief in suicide survivors and highlight modifiable risk factors for both conditions, as well as propose some public health measures to reduce the impact of the pandemic context on self-inflicted harm and its consequences on families, friends and the community. Obstacles to access to mental health support need to be overcome through the use of technology. Technicians should actively approach populations more vulnerable to develop suicidal ideation. Social media have the obligation to provide accurate an non-sensationalistic information. Families and friends should maintain social proximity, despite the need for physical distancing. When a suicide death occurs, police forces and health staff should be prepared to share the news with the family using an empathic and humane approach and providing psychological support. Funerals, memorials and other services should be held as much as possible. Closer contacts should be signalized and closely followed in order to detect the need for specific interventions. Help seeking behaviors should be promoted. Additionally, people should be educated on suicide and its impacts, in order to reduce stigma.

scholarly journals DAMPAK PANDEMI COVID-19 TERHADAP KESEHATAN MENTAL ORANG TUA DAN ANAK

2021 ◽  
Vol 17 (1) ◽  
pp. 41
Author(s):  
Yafi Sabila Rosyad ◽  
Setya Retno Wulandari ◽  
Istichomah Istichomah ◽  
Rika Monika ◽  
Anisa Febristi ◽  
...  
Keyword(s):  
Mental Health ◽  
Literature Review ◽  
Parental Stress ◽  
Quantitative Research ◽  
Google Scholar ◽  
Publish Or Perish ◽  
Parents And Children ◽  
Quasi Experimental ◽  
Almost All ◽  
The Impact

AbstrakGenap satu tahun pandemi COVID-19 terjadi dan salah satunya berdampak secara signifikan terhadap kesehatan mental bagi orang tua dan anak, mempengaruhi perubahan fungsi keluarga, dan menimbulkan risiko posttraumatic sindrom. Tujuan penelitian ini adalah untuk mendapatkan gap dan novelty terkait dampak pandemic COVID-19 terhadap kesehatan mental orang tua dan anak. Penelitian ini merupakan penelitian literature review dengan mengunakan diagram alir model PRISMA. Strategi pencarian artikel menggunakan aplikasi publish or perlish. Penelitian ini dilakukan pada bulan 1 Maret- 7 April 2021. Hasil penelusuran artikel melalui aplikasi publish or perlish dengan pencarian melalui tiga database yaitu crossef, google scholar, dan pubmed didapatkan 1216 data yang berupa artikel penelitian, buku, surat untuk editor, dan lembar review artikel. Sedangkan pencarian data melalui registers, peneliti menggunakan register sciencedirect dan didapatkan 339 data yang berupa artikel ilmiah, dan surat untuk editor. Dari ketiga tahap proses pencarian data base didapatkan hasil akhir 15 artikel dari 30 arttikel yang direview. Hasil review metodologi dari 15 artikel didapatkan hasil hampir seluruh artikel menggunakan metode kuantitatif sejumlah 14 artikel dan 1 artikel dengan metode Mixmetod . dari hasil review isi hasil penelitian didapatkan tiga kategori besar berupa perubahan prilaku, perubahan emosi dan psikologis, serta dampak kesehatan. Dari semua artikel yang didapat hampir semunya menggunakan penelitian kuantitatif sehingga peneliti menyarankan kepada peneliti selanjutkan untuk menggunakan metode kualitatif atau mixed metode. Jika ingin menggunakan metode peneliti menyarankan menggunakan design kuasi ekperimen yang bertujuan untuk mengatasi dan mencegah terjadi PTSD. Kata kunci: Stres orang tua, Psikologis anak, Pandemi COVID-19, Mental health AbstractEven one year, the COVID-19 pandemic has occurred. One of them has a significant impact on mental health for parents and children, affects changes in family function, and raises the risk of the posttraumatic syndrome. This study aims to find gaps and novelty related to the impact of the COVID-19 pandemic on the mental health of parents and children. This study is a literature review was conducted on March 1 - April 7, 2021, with the PRISMA model flow chart. The researcher uses a publish or perish application for search article. The search for articles through the publish or perish application by searching through three databases, namely crossref, google scholar, and PubMed, obtained 1216 data in the form of research articles, books, letters to editors, and review sheets article. While searching for data through registers, the researcher used a directly registered record and obtained 339 data in scientific papers and letters to editors. The final results were 15 articles from the 30 articles reviewed from the three stages of the database search process. The methodological review of 15 articles showed that almost all articles used the quantitative method, including 14 articles and 1 article using the Mix method. From the assessment of the contents of the research results, there are three major categories: behavioural changes, emotional and psychological changes, and health impacts. Of all the articles obtained, almost all of them use quantitative research, so researchers suggest that further researchers use qualitative or mixed methods. Researchers recommend using a quasi-experimental design that aims to overcome and prevent PTSD from occurring if you want to use the technique. Keywords: Parental stress, Child psychology, COVID-19 pandemic, Mental health

scholarly journals Effects of autism on 30-year outcome of anorexia nervosa

2022 ◽  
Vol 10 (1) ◽  
Author(s):  
Søren Nielsen ◽  
Sandra Rydberg Dobrescu ◽  
Lisa Dinkler ◽  
Carina Gillberg ◽  
Christopher Gillberg ◽  
...  
Keyword(s):  
Mental Health ◽  
Socioeconomic Status ◽  
Anorexia Nervosa ◽  
Psychiatric Symptoms ◽  
Negative Attitude ◽  
Autism Spectrum ◽  
Control Group ◽  
Ability To Work ◽  
The Impact

Abstract Background Long-term consequences of comorbid autism spectrum disorder (ASD) in individuals with anorexia nervosa (AN) are inadequately investigated. Methods In the 1980s, 51 adolescent-onset AN cases (AN group) and 51 matched controls (COMP group) were recruited from the community. They have been examined on five occasions. The four last assessments included the Morgan-Russell Outcome Assessment Schedule (MROAS) to assess eating disorder outcomes (weight, dieting, menstruation), and related problems including psychiatric, psychosexual and socioeconomic state. In the present study, at age 44, when 30 years had elapsed, MROAS data were compared with previous results. At age 16, 21, 24 and 32 years, all individuals had been assessed regarding ASD. At the 30-year follow-up, the impact of the ASD on the MROAS data was analysed. Results In the AN group, all core anorectic symptoms (weight, dieting, menstruation) were on a par with the COMP group at the 30-year follow-up, but the positive outcomes were limited to those who had never had an ASD diagnosis. Psychiatric state was significantly worse in the AN group, particularly in the subgroup who had an ASD diagnosis assigned. The AN group—again particularly those with ASD—had a more negative attitude to sexual matters than the COMP group. The AN group had worse outcomes than the COMP group for ‘personal contacts’, ‘social contacts,’ and ‘employment record’ at the 30-year follow-up and the outcomes were worse the more often an ASD diagnosis had been assigned. Limitations Rare data collection points throughout 30 years (only 5 assessments). ASD was assessed in the first four studies but was not assessed again at the 30-year follow-up. Conclusions Mental health, psychosexual, and socioeconomic status were compromised up to 30 years after AN onset. Coexisting ASD contributed to the poor outcome. Core anorectic symptoms had “normalised” three decades after AN onset. Plain English summary Some individuals with anorexia nervosa (AN) also suffer from autism. In this study we have investigated outcome of AN 30 years after the onset of AN and whether the presence of autism affects the outcome. Since the 1980s we have followed 51 individuals with teenage-onset AN and 51 healthy controls. They have been examined on five occasions, and an instrument that measures symptoms of AN (weight, dieting, body image), psychiatric symptoms, ability to work, and relationships with partner, family, and friends has been used to assess outcome. Autism was assessed in the first four studies. Symptoms of AN had normalised at 30-year follow-up, but only among those without autism. Psychiatric symptoms, ability to work, and relationships were issues that persisted after 30 years in the AN group, and those who had both autism and a history of AN had even more pronounced problems in these areas. The AN group had a more negative attitude to sexual matters than the control group, the outcome was worse the more often an autism diagnosis had been assigned. Conclusions Mental health, psychosexual, and socioeconomic status are affected up to 30 years after AN onset, particularly among those with autism.

scholarly journals Effective Strategies for Managing COVID-19 Emergency Restrictions for Adults with Severe ASD in a Daycare Center in Italy

2020 ◽  
Vol 10 (7) ◽  
pp. 436
Author(s):  
Natascia Brondino ◽  
Stefano Damiani ◽  
Pierluigi Politi
Keyword(s):  
Mental Health ◽  
Autism Spectrum Disorder ◽  
Retrospective Study ◽  
Challenging Behaviors ◽  
Autism Spectrum ◽  
Daily Activities ◽  
Daycare Center ◽  
Effective Strategies ◽  
Daycare Centers ◽  
The Impact

The COVID-19 pandemic has posed a serious challenge for the life and mental health of people with autism spectrum disorder (ASD). COVID-19 sanitary restrictions led to significant changes in the lives of people with ASD, including their routines; similarly, these modifications affected the daily activities of the daycare centers which they attended. The present retrospective study evaluated the impact of COVID-19 restrictions on challenging behaviors in a cohort of people with severe ASD attending a daycare center in Italy at the beginning of the pandemic. During the first two weeks of the pandemic, we did not observe variations in challenging behaviors. This suggests that adaptations used to support these individuals with ASD in adapting to the COVID-19 emergency restrictions were effective for managing their behavior.

Missing and misdiagnosis on the autism spectrum: Potential consequences and implications for practice

2015 ◽  
Vol 18 (1) ◽  
pp. 15-30
Author(s):  
Glenys Jones
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Research Evidence ◽  
Mental Health Problems ◽  
Genetic Test ◽  
Autism Spectrum ◽  
Positive Outcomes ◽  
Autism Diagnosis ◽  
Potential Benefits

he aim of this paper is to explore the current criteria for giving a diagnosis of autism, the potential benefits of diagnosis and the reasons why this may be missed or misdiagnosed and the possible consequences. It considers whether diagnosis is always necessary and if so, for whom and when. If diagnosis is made to inform intervention, does this happen and from whose perspective and what is the research evidence for current approaches in autism? As there is no definitive medical or genetic test for diagnosing autism, then it is always subjective and diagnostic rates will vary across services and within and between local authorities. The case is made that professionals need to develop ways to ensure that autistic individuals who would benefit from an autism diagnosis are identified so that their needs are met in a timely and appropriate way to prevent the development of mental health problems and to enable a good quality of life. Finally, focusing on the positive aspects of autism and enhancing the wellbeing of parents, carers and the staff in schools and settings should have positive outcomes for all.

scholarly journals Mental health problems and correlates among 746 217 college students during the coronavirus disease 2019 outbreak in China

2020 ◽  
Vol 29 ◽  
Author(s):  
Z. Ma ◽  
J. Zhao ◽  
Y. Li ◽  
D. Chen ◽  
T. Wang ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Support ◽  
College Students ◽  
Depressive Symptoms ◽  
Mental Health Problems ◽  
Acute Stress ◽  
Health Problems ◽  
Senior Year ◽  
Increased Risk ◽  
The Impact

Abstract Aims Coronavirus disease 2019 (COVID-19) pandemic is a major public health concern all over the world. Little is known about the impact of COVID-19 pandemic on mental health in the general population. This study aimed to assess the mental health problems and associated factors among a large sample of college students during the COVID-19 outbreak in China. Methods This cross-sectional and nation-wide survey of college students was conducted in China from 3 to 10 February 2020. A self-administered questionnaire was used to assess psychosocial factors, COVID-19 epidemic related factors and mental health problems. Acute stress, depressive and anxiety symptoms were measured by the Chinese versions of the impact of event scale-6, Patient Health Questionnaire-9 and Generalized Anxiety Disorder-7, respectively. Univariate and hierarchical logistic regression analyses were performed to examine factors associated with mental health problems. Results Among 821 218 students who participated in the survey, 746 217 (90.9%) were included for the analysis. In total, 414 604 (55.6%) of the students were female. About 45% of the participants had mental health problems. The prevalence rates of probable acute stress, depressive and anxiety symptoms were 34.9%, 21.1% and 11.0%, respectively. COVID-19 epidemic factors that were associated with increased risk of mental health problems were having relatives or friends being infected (adjusted odds ratio = 1.72–2.33). Students with exposure to media coverage of the COVID-19 ≥3 h/day were 2.13 times more likely than students with media exposure <1 h/day to have acute stress symptoms. Individuals with low perceived social support were 4.84–5.98 times more likely than individuals with high perceived social support to have anxiety and depressive symptoms. In addition, senior year and prior mental health problems were also significantly associated with anxiety or/and depressive symptoms. Conclusions In this large-scale survey of college students in China, acute stress, anxiety and depressive symptoms are prevalent during the COVID-19 pandemic. Multiple epidemic and psychosocial factors, such as family members being infected, massive media exposure, low social support, senior year and prior mental health problems were associated with increased risk of mental health problems. Psychosocial support and mental health services should be provided to those students at risk.

scholarly journals REACT study protocol: resilience after the COVID-19 threat (REACT) in adolescents

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e042824
Author(s):  
Alicia Joanne Smith ◽  
Laura Moreno-López ◽  
Eugenia Davidson ◽  
Maria Dauvermann ◽  
Sofia Orellana ◽  
...  
Keyword(s):  
Mental Health ◽  
Emotion Regulation ◽  
Social Isolation ◽  
Stress Responses ◽  
Acute Stress ◽  
Multilevel Modelling ◽  
Post Traumatic Stress ◽  
Populations At Risk ◽  
The Impact ◽  
React Study

IntroductionCOVID-19-related social isolation and stress may have significant mental health effects, including post-traumatic stress, anxiety and depression. These factors are thought to disproportionately affect populations at risk of psychopathology, such as adolescents with a history of childhood adversity (CA). Therefore, examining which factors may buffer the impact of COVID-19-related stress and isolation in vulnerable adolescents is critical. The Resilience After the COVID-19 Threat (REACT) study assesses whether emotion regulation capacity, inflammation and neuroimmune responses to stress induced in the laboratory prior to the pandemic predict responses to COVID-19-related social isolation and stress in adolescents with CA. We aim to elucidate the mechanisms that enable vulnerable adolescents to maintain or regain good mental health when confronted with COVID-19.Methods and analysisWe recruited 79 adolescents aged 16–26 with CA experiences from the Resilience After Individual Stress Exposure study in which we assessed emotion regulation, neural and immune stress responses to an acute stress task. Our sample completed questionnaires at the start of the UK lockdown (‘baseline’; April 2020) and three (July 2020) and 6 months later (October 2020) providing crucial longitudinal information across phases of the pandemic progression and government response. The questionnaires assess (1) mental health, (2) number and severity of life events, (3) physical health, (4) stress perception and (5) loneliness and friendship support. We will use multilevel modelling to examine whether individual differences at baseline are associated with responses to COVID-19-related social isolation and stress.Ethics and disseminationThis study has been approved by the Cambridge Psychology Research Ethics Committee (PRE.2020.037). Results of the REACT study will be disseminated in publications in scientific peer-reviewed journals, presentations at scientific conferences and meetings, publications and presentations for the general public, and through social media.

Potential Factors of Parenting Stress in Chinese Parents of Children With Autism Spectrum Disorder: A Systematic Review

2021 ◽  
pp. 108835762110125
Author(s):  
Catalina Sau Man Ng ◽  
Yuan Fang ◽  
Zixin Wang ◽  
Mengge Zhang
Keyword(s):  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Parenting Stress ◽  
Parental Stress ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Public Health Issue ◽  
Chinese Parents ◽  
Potential Factors ◽  
The Impact

The sizable prevalence of autism spectrum disorder (ASD) in China has recently emerged as an urgent public health issue, however studies investigating parenting stress in Chinese parents of children with ASD lack clarity in identifying the potential factors of stress. The aim of this systematic review was to identify and categorize the potential factors of stress based on findings in the literature. An extensive search of articles in online databases including PubMed, Web of Science, and EBSCOhost (ERIC, MEDLINE and PsycINFO) was conducted, as a result of which 24 eligible articles published from 2007 to 2019 were identified. Four key categories of potential factors of parental stress – cultural factors, parents’ psychopathological symptoms, problem behaviors in ASD children, and caregiver burden were identified. The impact of these potential factors on parental coping strategies and on the quality of life in affected families were also discussed.

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