scholarly journals A systematic review of quality of life of adults on the autism spectrum

Autism ◽  
2017 ◽  
Vol 22 (7) ◽  
pp. 774-783 ◽  
Author(s):  
Michael Ayres ◽  
Jeremy R Parr ◽  
Jacqui Rodgers ◽  
David Mason ◽  
Leah Avery ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Personal Communication ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Bibliographic Databases ◽  
Measurement Tools ◽  
Robust Measures

Autism spectrum disorder is associated with co-existing conditions that may adversely affect an individual’s quality of life. No systematic review of quality of life of adults on the autism spectrum has been conducted. Our objectives were as follows: (1) review the evidence about quality of life for adults on the autism spectrum; (2) critically appraise current practice in assessing quality of life of adults on the autism spectrum. We searched bibliographic databases and other literature to identify studies using a direct measure of quality of life of adults on the autism spectrum. Hand searching of reference lists, citation searching and personal communication with field experts were also undertaken. In total, 827 studies were identified; 14 were included. Only one quality of life measure designed for use with the general autism spectrum population was identified. Quality of life of adults on the autism spectrum is lower than that of typically developing adults, when measured with tools designed for the general population. There are no comprehensive autism spectrum disorder–specific quality of life measurement tools validated for use with representative samples of adults on the autism spectrum. There is a pressing need to develop robust measures of quality of life of autistic adults.

Socio-emotional determinants of depressive symptoms in adolescents and adults with autism spectrum disorder: A systematic review

Autism ◽  
2020 ◽  
Vol 24 (4) ◽  
pp. 995-1010 ◽  
Author(s):  
Isaac C Smith ◽  
Susan W White
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Social Motivation ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Adults With Autism ◽  
Symptoms Of Depression ◽  
Adolescents And Adults

Co-occurring problems with mood and anxiety among adolescents and adults on the autism spectrum are highly prevalent and contribute to poor outcomes and diminished quality of life. The current study’s principal aim was to evaluate variation in the presentation of depression symptomatology among adolescents and adults with autism spectrum disorder, specifically to determine if social motivation may be implicated in an autism spectrum disorder–specific subtype of depression. A systematic review was conducted, with an initial search conducted in February 2018 and a search update conducted in November 2019, yielding 48 articles which met inclusion criteria. Results support other recent work indicating that symptoms of depression are highly prevalent among adolescents and adults with autism spectrum disorder. Coding of study variables related to core autism spectrum disorder symptoms provided initial evidence for the proposition of a conceptual model implicating social motivation in the etiology of depression among a subset of individuals with autism spectrum disorder. Lay abstract Many adolescents and adults with autism spectrum disorder experience difficulty with symptoms of depression. These symptoms can contribute to poor quality of life and lack of independence for adolescents and adults. To better understand these symptoms, we conducted a review of articles that examined the presentation of depression specific to autism spectrum disorder. Our goals in conducting this study were (1) to examine whether depression may be associated with symptoms that are common among people with autism spectrum disorder, such as loneliness or poor social motivation; (2) to determine whether people with autism spectrum disorder experience depression in a different way than the general population; and (3) to add to other recent studies that have examined how common depression is in autism spectrum disorder and how it is typically measured. Our study reviewed 48 papers on this topic. Results showed that a substantial proportion of people with autism spectrum disorder experience significant symptoms of depression. We related our results to social factors commonly studied in this field (i.e. social motivation) and proposed a new model for the development of depression in this population.

scholarly journals Systematic review of tools to measure outcomes for young children with autism spectrum disorder

2015 ◽  
Vol 19 (41) ◽  
pp. 1-506 ◽  
Author(s):  
Helen McConachie ◽  
Jeremy R Parr ◽  
Magdalena Glod ◽  
Jennifer Hanratty ◽  
Nuala Livingstone ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Young People ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Measurement Properties ◽  
Children With Asd

BackgroundThe needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.ObjectivesTo examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.MethodsThe MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.ResultsThe conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).ConclusionsThis is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.Future workPriorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.Study registrationThis study is registered as PROSPERO CRD42012002223.FundingThe National Institute for Health Research Health Technology Assessment programme.

Systematic Review on Quality of Life among Caregivers of Children with Autism Spectrum Disorder

2017 ◽  
Vol 9 (4) ◽  
pp. 83
Author(s):  
R Nancy Grace ◽  
T golden Catherine ◽  
K Kanchana Mala ◽  
C. Kanniammal ◽  
Judie Arullapan
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder

scholarly journals The Association between Parenting Stress, Positive Reappraisal Coping, and Quality of Life in Parents with Autism Spectrum Disorder (ASD) Children: A Systematic Review

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 52
Author(s):  
Ni’matuzahroh ◽  
Mein-Woei Suen ◽  
Valendriyani Ningrum ◽  
Widayat ◽  
Muhamad Salis Yuniardi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Coping Strategies ◽  
Parenting Stress ◽  
High Stress ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Positive Reappraisal

Parents with autism spectrum disorder (ASD) children generally suffer from poor coping and an impaired quality of life (QoL). This systematic review investigates parenting stress, positive reappraisal coping, and QoL in parents with ASD children. A literature search was carried out for publications written in English on the selected investigation topics using five databases, namely, Scopus, PubMed, Wiley, ScienceDirect Online, and EBSCO. Only studies investigating or measuring parenting stress, positive reappraisal coping, and QoL in ASD were included. Our results indicate that parents with ASD children have high stress levels. This is associated with the ineffective use of coping strategies and a low QoL. Adaptive coping strategies are related to a higher QoL, whereas maladaptive coping techniques are related to a worse QoL. Positive reappraisal coping is negatively correlated to meaningfulness, and it is used by parents to change their daily routines in order to motivate themselves towards new and evolving goals in life. Finally, we found a significant negative correlation between parenting stress, positive reappraisal coping, and the QoL of parents with ASD children. Positive reappraisal coping as a strategy helps parents adapt to stress and was found to be a potential mediatory function between parental stress and QoL.

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

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.

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

2017 ◽  
Vol 3 (1) ◽  
pp. 3-14 ◽  
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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