Preliminary Evaluation of the FETASS Training for Parents of Children With Autism Spectrum Disorder: A Pilot Study

While several recent evaluation studies have shown the efficacy of parent training programs for children with neurodevelopmental disorders, manual-based training in German is still scarce. To address this gap, we developed a specific modularized training program for parents of children from preschool to pre-adolescent age with Autism Spectrum Disorder (FETASS). The overarching purpose of the FETASS intervention is to enhance social communication behavior and quality of life of the child by coaching parents. As a proximal target, the FETASS training aims to provide families with behavior management and communication strategies. The development of the training was influenced by published behavioral parent trainings and autism-specific interventions. The training comprises eight weekly sessions and targets families whose children have a diagnosis of Autism Spectrum Disorder (ASD) without intellectual and language impairments. As a preliminary pilot study, the purpose was to evaluate the acceptability of the training. Furthermore, the study aimed at initially evaluating social communication behavior, quality of life of the child, parental stress level, and parenting after training in comparison to a treatment as usual (TAU) group. Exploratively, long-term effects were investigated after 6 months of training as well. In total, 57 families participated (n[TAU] = 29, n[FETASS] = 28). Questionnaires about social communication behavior and quality of life of the child, parental stress, and parenting were administered at three time points (t1: baseline TAU/FETASS, t2: post TAU/FETASS; and t3: 6-month follow-up after FETASS). Primary outcome measures were the social communication behavior of the child and the parent’s proxy report on quality of life of the child. Secondary outcome measures were changes in parental stress and parenting behavior. Acceptability of the training was very high and we had almost no dropouts during training. Results for the primary outcome measure of social communication behavior, overall quality of life of the child, and long-term effects on social communication behavior were not significant. While long-term findings for parent stress reduction and for the quality of life of the child are promising, further research has to be done in a future randomized controlled trial.

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Autism Spectrum Disorder

Encyclopedia of Social Work ◽

10.1093/acrefore/9780199975839.013.856 ◽

2020 ◽

Author(s):

Sandy Magaña ◽

Lauren Bishop

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Social Workers ◽

Old Age ◽

Developmental Disability ◽

Social Communication ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Patterns Of Behavior

Autism spectrum disorder is a heritable, developmental disability that is characterized by challenges with social communication and the presence of restrictive and/or repetitive patterns of behavior. Autism spectrum disorder affects development and quality of life from very early development through old age. Social workers play a number of different roles in supporting and advocating for individuals on the autism spectrum and their families. It is important that social workers understand the etiology, diagnosis and treatment of autism spectrum disorder, how it manifests throughout the lifespan, and challenges faced by families affected by ASD.

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Parental stress, family quality of life, and family-teacher partnerships: Families of children with autism spectrum disorder

Research in Developmental Disabilities ◽

10.1016/j.ridd.2017.08.013 ◽

2017 ◽

Vol 70 ◽

pp. 152-162 ◽

Cited By ~ 13

Author(s):

Yun-Ju Hsiao ◽

Kyle Higgins ◽

Tom Pierce ◽

Peggy J. Schaefer Whitby ◽

Richard D. Tandy

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Parental Stress ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Family Quality Of Life

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Development and Validation of a Questionnaire to Assess Parent Reported Quality of Life Pre and Post Vision Therapy in a Population with Autism Spectrum Disorder

Vision Development & Rehabilitation ◽

10.31707/vdr2019.5.3.p195 ◽

2019 ◽

pp. 195-207

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Social Behavior ◽

Psychometric Properties ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Visual Behavior ◽

The Mean ◽

Vision Therapy

Background: Autism spectrum disorder is characterized in part by atypical behavior in the communication, social, and visual domains. Success in vision therapy is judged not only by changes in optometric findings, but through improvement in quality of life involving communication, social behavior and visual behavior. It would therefore be beneficial to have a validated questionnaire to assess parent reported quality of life pre and post vision therapy specific to patients with autism spectrum disorder. To our knowledge, a questionnaire of this nature has not been previously published in the literature. Methods: Questionnaire items were generated through surveying medical literature based on symptoms in three different categories: visual behavior, social behavior and communication. A pool of 34 questions was developed initially and then with thorough discussion with other experts, a 20-point questionnaire was developed with each item reflected in the construct concept. A draft of 20 questions was then sent to 10 subject experts with clinical experience in the field for more than 20 years, to review the pooled items. Validity and reliability was established prior to assessing the psychometric properties of the ASD/QOL-VT. Prospective observational study was conducted for a duration of 18 months. The study included individuals undergoing vision therapy in the age range of 3 to 15 years who had been diagnosed with ASD. The questionnaire was administered to parents of these children prior to the start of vision therapy. All subjects completed a minimum of 60 vision therapy sessions. The questionnaire was readministered after completing 60 sessions of vision therapy. Results: Cronbach’s alpha value for this questionnaire was 0.93, which reflected very good internal consistency. Factorial analysis yielded four factors with an Eigen value exceeding 1.0 which accounted for 68% variation in the model. The Cronbach alpha value for subscales identified by factorial analysis is 0.97 indicating excellent internal reliability. The mean pre vision therapy social behavior, communication and visual behavior score was 12.0±3.21, 17.07±4.57 and 26.97±6.41 respectively. The mean post vision therapy scores for social behavior, communication and visual behavior was 8.27±4.16, 11.33±5.27 and 17.93±6.52 respectively. On paired t test, the mean difference in score was statistically significant with P<0.001 in all three subcategories. Conclusions: Our study presents the development of a valid and reliable parent questionnaire, the ASD/QOL-VT, that judges communication, social behavior, and visual behavior in autism. Results of the study conducted indicate that vision therapy can result in significant improvements in the quality of life of patients with ASD as judged by their parents. This is evidenced by statistically significant changes in psychometric properties of the ASD/QOL-VT in social behavior, communication and visual behavior.

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Emotion Dysregulation in Autism Spectrum Disorder

The Oxford Handbook of Emotion Dysregulation ◽

10.1093/oxfordhb/9780190689285.013.20 ◽

2018 ◽

pp. 282-298

Author(s):

Emily Neuhaus

Keyword(s):

Autism Spectrum Disorder ◽

Social Communication ◽

Educational Outcomes ◽

Emotion Dysregulation ◽

Research Priorities ◽

Theoretical Models ◽

Autism Spectrum ◽

Repetitive Behaviors ◽

Spectrum Disorder

Autism spectrum disorder (ASD) is defined by deficits in social communication and interaction, and restricted and repetitive behaviors and interests. Although current diagnostic conceptualizations of ASD do not include emotional difficulties as core deficits, the disorder is associated with emotion dysregulation across the lifespan, with considerable implications for long-term psychological, social, and educational outcomes. The overarching goal of this chapter is to integrate existing knowledge of emotion dysregulation in ASD and identify areas for further investigation. The chapter reviews the prevalence and expressions of emotion dysregulation in ASD, discusses emerging theoretical models that frame emotion dysregulation as an inherent (rather than associated) feature of ASD, presents neurobiological findings and mechanisms related to emotion dysregulation in ASD, and identifies continuing controversies and resulting research priorities.

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Evaluation of the clinical characteristics of children with autism spectrum disorder and epilepsy and the perception of their parents on quality of life

Epilepsy Research ◽

10.1016/j.eplepsyres.2021.106599 ◽

2021 ◽

Vol 172 ◽

pp. 106599

Author(s):

Halil Celik ◽

S. Burak Acikel ◽

M. Akif Fatih Ozdemir ◽

Erhan Aksoy ◽

Ulku Oztoprak ◽

...

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Clinical Characteristics ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder

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Examining the experiences and quality of life of patients with an autism spectrum disorder detained in high secure psychiatric care

Advances in Autism ◽

10.1108/aia-02-2016-0006 ◽

2017 ◽

Vol 3 (1) ◽

pp. 3-14 ◽

Cited By ~ 11

Author(s):

David Murphy ◽

Hannah Mullens

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Psychiatric Care ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Living Situation ◽

Diverse Range ◽

Content Type ◽

Secure Psychiatric Care

Purpose Although individuals with an autism spectrum disorder (ASD) represent a small proportion of forensic psychiatric patients as a group they present with specific difficulties and needs. There is also evidence that if detained individuals with an ASD experience particular difficulties within custodial environments as a result of a mismatch between the difficulties associated with their ASD and the environmental demands. The purpose of this paper is to explore the experience of individuals with an ASD admitted to a high secure psychiatric care (HSPC) hospital. Design/methodology/approach Using both a semi-structured interview and a quality of life self-report measure (the Lancashire Quality of Life Profile) the experiences and views of seven patients with an ASD detained in one HSPC hospital were qualitatively explored. Findings Whilst a diverse range of negative and positive aspects of being within HSPC were identified by patients interviewed, those with prison experience thought HSPC was a less stressful environment with more therapeutic opportunities. As a group, patients with an ASD reported a similar or significantly better quality of life in many domains (global, leisure, financial and living situation) compared to other detained forensic patient groups. Practical implications Although most patients with an ASD interviewed reported positive experiences, there are a number of practical improvements that could be made within the hospital to reduce experienced stress levels and perhaps improve therapeutic outcomes. Originality/value Within the context of the Department of Health's autism strategy (2010) and subsequent update think autism (2014), the survey highlights continued ASD awareness training for staff as important. In responding to the risks and needs of individuals with an ASD in HSPC there is further support for the development of an ASD specialist service.

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Exploring possible predictors and moderators of an executive function training for children with an autism spectrum disorder

Autism ◽

10.1177/1362361316682622 ◽

2017 ◽

Vol 22 (4) ◽

pp. 440-449 ◽

Cited By ~ 3

Author(s):

Marieke de Vries ◽

Mathilde GE Verdam ◽

Pier JM Prins ◽

Ben A Schmand ◽

Hilde M Geurts

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Autism Spectrum ◽

Reward Sensitivity ◽

Spectrum Disorder ◽

Autism Traits ◽

Moderating Factors ◽

Flexibility Training ◽

Executive Function Training

Previously, a total of 121 children with an autism spectrum disorder (ASD) performed an adaptive working memory (WM)-training, an adaptive flexibility-training, or a non-adaptive control (mock)-training. Despite overall improvement, there were minor differences between the adaptive and mock-training conditions. Moreover, dropout was relatively high (26%). In the current study we explored potential predicting and moderating factors to clarify these findings. The effects of intelligence, autism traits, WM, flexibility, reward sensitivity and Theory of Mind on dropout, improvement during training, and improvement in everyday executive functioning (EF), ASD-like behavior, and Quality of Life (QoL) were studied. None of the predictors influenced dropout or training improvement. However, 1) more pre-training autism traits related to less improvement in EF and QoL, and 2) higher reward sensitivity was related to more improvement in QoL and ASD-like behavior. These findings suggest that these EF-training procedures may be beneficial for children with fewer autism traits and higher reward sensitivity. However, the exploratory nature of the analyses warrant further research before applying the findings clinically.

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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

Clinical Child Psychology and Psychiatry ◽

10.1177/13591045211061795 ◽

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.

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