A Stakeholder-Engaged Approach to Development of an Animal-Assisted Intervention for Obesity Prevention Among Youth With Autism Spectrum Disorder and Their Pet Dogs

Stakeholder involvement in research has been demonstrated to increase the effectiveness, validity, and quality of a study. This paper describes the engagement of a stakeholder panel in the development and implementation of an animal-assisted intervention (AAI) assessment and program for children diagnosed with Autism Spectrum Disorder (ASD). Canines for Autism Activity and Nutrition (CAAN) aims to promote physical activity and wellness among children diagnosed with ASD by integrating activities with their pet dog during the child's ongoing Applied Behavioral Analysis (ABA) in-home therapy sessions. Feedback from stakeholders guided program development at each stage of the research process, including this publication. Utilizing a stakeholder-informed approach was essential for the development of assessment tools, program materials, and program design. Methods that may assist others to effectively partner with stakeholders to implement an AAI among children diagnosed with ASD or related disorders are described.

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Leisure and Quality of Life among Parents of Children with Autism Spectrum Disorder – A Review Based Analysis

International Journal of Management, Technology, and Social Sciences ◽

10.47992/ijmts.2581.6012.0139 ◽

2021 ◽

pp. 176-188

Author(s):

Menezes Ida Sylvia ◽

Laveena D’Mello

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Children With Autism ◽

Well Being ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Assessment Tools ◽

Children With Asd ◽

Quality Life

Purpose: Owing to the time-consuming job of caring for their child's family and friends, parents of children with autism spectrum disorder risk losing family relationships. The main aim was to identify and intervene in the quality of life of parents, the interventions offered to parents as primary caregivers of children with ASD. To explore parents' perspectives on beneficent for children with autism in connection with formative years, resources, and to confront the consequences of upraising a child with ASD. Design/Methodology/Approach: Systematic literature, resulting in the publication of 27 studies that focused on the living standards of parents of children with ASD. Systematic literature scrutiny was performed using the search words "autism spectrum disorder," ‘primary caregiver/ parents/ mother” and "Quality of life" in the electronic databases Research gate, Academia, Google Scholar, and PsycInfo. Findings/Result: QOL autism-specific assessment tools were limited and hence, most studies have employed a general measure tool to assess the influence of the diagnosed disorder on the physical and psychological well-being of parents/caregivers. Originality/Value: The sequel of this study advocate that to date, the appraisal of quality life in parents of children with ASD into clinical practice has been rationalized by the shortage of autism-specific scales. As generically do not catch all pertinent aspects of living with ASD raising the need for immediate measures. Implementing parental interventions in parallel with the child’s interventions may raise QOL. Paper Type: Systematic literature review.

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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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Mental health correlates and potential childhood predictors for the wish to be of the opposite sex in young autistic adults

Autism ◽

10.1177/13623613211024098 ◽

2021 ◽

pp. 136236132110240

Author(s):

Jung-Chi Chang ◽

Meng-Chuan Lai ◽

Yueh-Ming Tai ◽

Susan Shur-Fen Gau

Keyword(s):

Mental Health ◽

Autism Spectrum Disorder ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Typically Developing ◽

Item Endorsement ◽

Opposite Sex ◽

Autistic Adults

Cross-sectional research has demonstrated the overrepresentation of gender dysphoria in children and adults with autism spectrum disorder. However, the predictors and underlying mechanisms of this co-occurrence remain unclear. This follow-up study aimed to explore baseline (childhood/adolescence) predictors for the follow-up (adulthood) self-reported wish to be of the opposite sex and to investigate its mental health correlates in a sample of 88 autistic individuals as compared with 42 typically developing controls. An item on the Adult Self-Report Inventory-4, “I wish I was the opposite sex,” was used. We compared mental health symptoms between adults with and without this item endorsement. We used prediction models to explore family and autism-related predictors in childhood/adolescence to endorse this item in adulthood. There were more adults endorsing the item in the autism spectrum disorder group compared with the typically developing group. Autistic adults who endorsed the item experienced more mental health challenges, more bullying victimization, more suicidal ideations, and worse quality of life. Lower parent-reported family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. It is necessary to raise more attention to gender development and related mental health impact in autistic individuals. Lay abstract Autistic people/people with autism spectrum disorder are more likely to experience gender dysphoria. However, the possible longitudinal predictors and underlying mechanisms of this co-occurrence are unclear. To fill this knowledge gap, we assessed 88 people with autism spectrum disorder and 42 typically developing individuals at their average ages of 13.0 (baseline, childhood/adolescence) and 20.2 years old (follow-up, adulthood). At follow-up, their endorsement on the item “I wish I was the opposite sex” was used to evaluate gender dysphoric symptoms. We compared mental health symptoms between adults with and without this item endorsement at the follow-up assessment. We explored parent-reported family and autism characteristics-related predictors in childhood/adolescence to this item endorsement in adulthood. We found that more autistic adults reported the wish to be of the opposite sex than did typically developing individuals. Autistic adults who endorsed this item experienced more mental health challenges, more school bullying and cyberbullying, more suicidal ideation, and worse quality of life. Moreover, parent-reported lower family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. More attention and support should be provided to autistic people regarding gender development and related mental health and quality of life impact, especially during the transition period to young adulthood.

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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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