scholarly journals Perceptions of Stress and Enrichment in Caregivers of Children with Autism Spectrum Disorder: Implications for Community Support

Societies ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. 88 ◽  
Author(s):  
Hung-Chu Lin ◽  
Janna Bourque ◽  
Paula Zeanah ◽  
Robert McFatter
Keyword(s):  
Autism Spectrum Disorder ◽  
Symptom Severity ◽  
Self Efficacy ◽  
Rating Scale ◽  
Community Support ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Parental Experiences ◽  
Sense Of Competence ◽  
Managing Stress

Compared to negative experiences associated with parenting a child with Autism Spectrum Disorder (ASD), research has paid much less attention to positive aspects of experiences. This study examined both experiences of stress and enrichment in parenting a child with ASD to provide insights for practical community support services. Eighty-seven caregivers responded to the Effects of the Situation Questionnaire, a modified version of the Childhood Autism Rating Scale (2nd Ed.), and the Parental Sense of Competence Scale. Stress and enrichment were examined in their relations to child symptom severity, number of child-focused services, and parenting self-efficacy. Parenting self-efficacy and perceived level of stress, but not child symptom severity or number of child-focused services, were correlated with parental experiences of enrichment. The link between parenting self-efficacy and enrichment was mitigated by reported levels of stress. The findings revealed the paradoxical existence of enrichment experiences despite challenges in parenting a child with ASD. Notably, a higher number of community supports was associated with higher levels of stress, suggesting quality of support may be more important than involvement in numerous services. Moreover, enrichment occurs disregarding child’s symptoms and entails properly managing stress and a sense of parenting efficacy.

scholarly journals To raise a child with autism spectrum disorder: A qualitative, comparative study of parental experiences in the United States and Senegal

2020 ◽  
pp. 136346152095334
Author(s):  
Adair Cardon ◽  
Tara Marshall
Keyword(s):  
Autism Spectrum Disorder ◽  
Community Support ◽  
The United States ◽  
Autism Spectrum ◽  
Cross Cultural ◽  
Spectrum Disorder ◽  
Cultural Perspective ◽  
Structured Interviews ◽  
Parental Experiences ◽  
American Families

Raising a child with Autism Spectrum Disorder (ASD) can often be a difficult and stressful process for families and caregivers. Though research on ASDs in Africa is burgeoning, very little is known about autism in francophone West Africa. Furthermore, no known ASD studies have explored parental experiences in particular from a cross-cultural perspective. This research used Interpretative Phenomenological Analysis to analyze in-depth, semi-structured interviews with seven Senegalese and seven American families to investigate parental experiences within the Senegalese community with further illustration by cross-cultural comparison. Comparative analysis of data across the two countries was undertaken to identify cultural variables previously unreported, especially those that may affect Senegalese family experience. Analysis of interviews revealed thematic differences in social and community support. Although access to effective treatment services was low among Senegalese families compared to the American families, traditional Senegalese household structures and community relations were hypothesized to serve as protective factors against the high social isolation and resulting logistical struggles reported in the U.S. sample. Further targeted research within the Senegalese environment is recommended, particularly to explore social stigma and its possible effects on families with autism, causal beliefs and treatment practices, and parental mental health and wellbeing.

scholarly journals Possible tics diagnosed as stereotypies in patients with severe autism spectrum disorder: a video-based evaluation

2020 ◽  
Author(s):  
Cristiano Termine ◽  
Enzo Grossi ◽  
Valentina Anelli ◽  
Ledina Derhemi ◽  
Andrea E. Cavanna
Keyword(s):  
Autism Spectrum Disorder ◽  
Rating Scale ◽  
Young Patients ◽  
Autism Spectrum ◽  
Repetitive Behaviors ◽  
Spectrum Disorder ◽  
High Rate ◽  
Video Recordings ◽  
Significant Difference ◽  
Severe Autism

Abstract Background The association of stereotypies and tics is not rare in children with severe autism spectrum disorder (ASD). The differential diagnosis between stereotypies and tics in this patient population can be difficult; however, it could be clinically relevant because of treatment implications. Methods A total of 108 video recordings of repetitive behaviors in young patients with stereotypies in the context of ASD were reviewed by a movement disorders expert and a trainee, in order to assess the prevalence of possible co-morbid tics. The Modified Rush Videotape Rating Scale (MRVS) was used to rate tic frequency and severity. Results Out of 27 patients with stereotypies (24 males; mean age 14 years), 18 (67%) reported possible tics. The most frequently observed tics were eye blinking, shoulder shrugging, neck bending, staring, and throat clearing. The mean MRVS score was 5, indicating mild tic severity. The only significant difference between patients with tics and patients without tics was the total number of stereotypies, which was higher in the subgroup of patients without tics (p = 0.01). Conclusions Expert review of video-recordings of repetitive behaviors in young patients with ASD and stereotypies suggests the possibility of a relatively high rate of co-morbid tics. These findings need to be integrated with a comprehensive clinical assessment focusing on the diagnostic re-evaluation of heterogeneous motor manifestations.

scholarly journals Response (minimum clinically relevant change) in ASD symptoms after an intervention according to CARS-2: consensus from an expert elicitation procedure

2021 ◽  
Author(s):  
Lucie Jurek ◽  
Matias Balthazar ◽  
Sheffali Gulati ◽  
Neda Novakovic ◽  
María Núñez ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Rating Scale ◽  
Expert Knowledge ◽  
Scientific Evidence ◽  
Autism Spectrum ◽  
Expert Elicitation ◽  
Spectrum Disorder ◽  
Initial Finding ◽  
Elicitation Process ◽  
Core Symptoms

AbstractThe lack of consensual measures to monitor core change in Autism Spectrum Disorder (ASD) or response to interventions leads to difficulty to prove intervention efficacy on ASD core symptoms. There are no universally accepted outcome measures developed for measuring changes in core symptoms. However, the CARS (Childhood Autism Rating Scale) is one of the outcomes recommended in the EMA Guideline on the clinical development of medicinal products for the treatment of ASD. Unfortunately, there is currently no consensus on the response definition for CARS among individuals with ASD. The aim of this elicitation process was to determine an appropriate definition of a response on the CARS2 scale for interventions in patients with Autism Spectrum Disorder (ASD). An elicitation process was conducted following the Sheffield Elicitation Framework (SHELF). Five experts in the field of ASD and two experts in expert knowledge elicitation participated in an 1-day elicitation workshop. Experts in ASD were previously trained in the SHELF elicitation process and received a dossier of scientific evidence concerning the topic. The response definition was set as the mean clinically relevant improvement averaged over all patients, levels of functioning, age groups ***and clinicians. Based on the scientific evidence and expert judgment, a normal probability distribution was agreed to represent the state of knowledge of this response with expected value 4.03 and standard deviation 0.664. Considering the remaining uncertainty of the estimation and the available literature, a CARS-2 improvement of 4.5 points has been defined as a threshold to conclude to a response after an intervention. A CARS-2 improvement of 4.5 points could be used to evaluate interventions' meaningfulness in indivudals. This initial finding represents an important new benchmark and may aid decision makers in evaluating the efficacy of interventions in ASD.

Dance, functioning and quality of life in children with Down syndrome and autism spectrum disorder dance, functioning and quality of life in Down syndrome and autism spectrum disorder

2021 ◽  
pp. 135910452110617
Author(s):  
Evanilza T. Adorno ◽  
Daiany C de J. Dos Santos ◽  
Beatriz M. DeJesus ◽  
Adrielle A. Passos ◽  
Lavínia Teixeira-Machado
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Down Syndrome ◽  
Rating Scale ◽  
Functional Independence Measure ◽  
Functional Independence ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Children With Down Syndrome

This study investigated dance practice in psychosocial and functional aspects, and quality of life in children with Down syndrome and autism spectrum disorder. Children with DS and ASD, between 3 and 12 years old, attended a dance program during 16 sessions/lessons, lasting 60 min, twice a week, in suitable place. Functional Independence Measure (FIM), Childhood Autism Rating Scale SF-36 quality of life survey, and Knowledge, Attitude and Practice Inquiry (KAP Inquiry) were applied before and after dance classes. Eleven participants concluded the study. Functional independence changes were observed in relation to self-care, sphincter control, locomotion, and communication domains. Children’ “quality of life” reported by parents showed changes in functional capacity, vitality, mental health, physical and social aspects, and general state of health domains. These findings suggest that regular dance practice can underlie psychosocial adjustments in children with DS and ASD.

scholarly journals Decreased homotopic interhemispheric functional connectivity in children with autism spectrum disorder

2020 ◽  
Author(s):  
Shuxia Yao ◽  
Menghan Zhou ◽  
Yuan Zhang ◽  
Feng Zhou ◽  
Qianqian Zhang ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Functional Connectivity ◽  
Symptom Severity ◽  
Visual Processing ◽  
Brain Networks ◽  
Cingulate Cortex ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Volume Changes ◽  
Processing Network

AbstractWhile a number of functional and structural changes occur in large-scale brain networks in autism spectrum disorder (ASD), reduced interhemispheric resting state functional connectivity (rsFC) between homotopic regions may be of particular importance as a biomarker. ASD is an early-onset developmental disorder and neural alterations are often age-dependent, reflecting dysregulated developmental trajectories, although no studies have investigated whether homotopic interhemispheric rsFC alterations occur in ASD children. The present study conducted a voxel-based homotopic interhemispheric rsFC analysis in 146 SD and 175 typically developing children under age 10 and examined associations with symptom severity in the Autism Brain Imaging Data Exchange datasets. Given the role of corpus callosum (CC) in interhemispheric connectivity and reported CC volume changes in ASD we additionally examined whether there were parallel volumetric changes in ASD children. Results demonstrated decreased homotopic rsFC in ASD children in the medial prefrontal cortex, precuneus and posterior cingulate cortex of the default mode network (DMN), the dorsal anterior cingulate cortex of the salience network, the precentral gyrus and inferior parietal lobule of the mirror neuron system, the lingual, fusiform and inferior occipital gyri of the visual processing network and thalamus. Symptom severity was associated with homotopic rsFC in regions in the DMN and visual processing network. There were no significant CC volume changes in ASD children. The present study shows that reduced homotopic interhemispheric rsFC in brain networks in ASD adults/adolescents is already present in children of 5-10 years old and further supports their potential use as a general ASD biomarker.

scholarly journals Age of First Walking and Associations with Symptom Severity in Children with Suspected or Diagnosed Autism Spectrum Disorder

2019 ◽  
Vol 50 (9) ◽  
pp. 3216-3232 ◽  
Author(s):  
Lise Reindal ◽  
Terje Nærland ◽  
Bernhard Weidle ◽  
Stian Lydersen ◽  
Ole A. Andreassen ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Symptom Severity ◽  
Autism Spectrum ◽  
Spectrum Disorder
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