Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life

Gerber, F; Bessero, Séverine; Robbiani, B.; Courvoisier, D.; Baud, M. A.; Traoré, Mireille; Blanco, Pedro J.; Giroud, M.; Carminati, Giuliana Galli

doi:10.1111/j.1365-2788.2011.01455.x

Cited by 34 publications

(30 citation statements)

References 64 publications

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“…The classification of autism and the severity of the disorder are important factors in the assessment of quality of life . One of the limitations of this study is that because of the reliance on school records for the diagnosis of autism, the classification and assessment of severity were not captured with the desired degree of accuracy.…”

Section: Discussionmentioning

confidence: 98%

Parental perceptions of the oral health‐related quality of life of autistic children in Saudi Arabia

Pani

Mubaraki

Ahmed

et al. 2012

Special Care in Dentistry

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The aim of this study was to use parental perception to assess the Oral Health Related Quality of Life (OHRQoL) of children with Autism. A total of 59 families of children with Autism who had an unaffected sibling were cross-matched for age and gender of the affected child with families with no autistic children. The parents were administered the Parental Perception Questionnaire (P-CPQ) and the Family impact scale (FIS) components of and Arabic version of the Child Oral Health Related Quality of Life questionnaire (COHRQL). The P-CPQ scores of Children with Autism were compared with those of their unaffected siblings and those of children from families with no autistic child, while the FIS scores were compared between families with and without an autistic child. Regression models were constructed to show the association of sociodemographic factors on the OHRQoL of autistic children. The results of this study seem to suggest that childhood autism results in a reduced OHRQoL for both the affected child as well as the family. The apparent reduced parental concern with unaffected siblings of autistic children, when compared to parental concern towards children in families with no autistic child is an area that could merit further research.

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Section: Discussionmentioning

confidence: 98%

Parental perceptions of the oral health‐related quality of life of autistic children in Saudi Arabia

Pani

Mubaraki

Ahmed

et al. 2012

Special Care in Dentistry

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“…Improved quality of life is increasingly a primary goal of interventions and services for adults with ASD (Gerber et al, 2011), making accurate assessment of this construct critical for research and clinical practice. Measuring the validity of self-report is complex when it comes to quality of life, however.…”

Section: Quality Of Lifementioning

confidence: 99%

Assessing the convergence of self-report and informant measures for adults with autism spectrum disorder

Sandercock

Lamarche

Klinger

et al. 2020

Autism

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Self-report measures are widely used for research and clinical assessment of adults with autism spectrum disorder. However, there has been little research examining the convergence of self- and informant-report in this population. This study examined agreement between 40 pairs of adults with autism spectrum disorder and their caregivers on measures of symptom severity, daily living skills, quality of life, and unmet service needs. In addition, this study examined the predictive value of each reporter for objective independent living and employment outcomes. Caregiver and self-report scores were significantly positively correlated on all measures (all r’s >0.50). Results indicated that there were significant differences between reporter ratings of daily living skills, quality of life, and unmet service needs, but no significant differences between ratings of symptom severity. Combining caregiver-report and self-report measures provided significantly higher predictive value of objective outcomes than measures from a single reporter. These findings indicate that both informants provide valuable information and adults with autism spectrum disorder should be included in reporting on their own symptoms and experiences. Given that two reporters together were more predictive of objective outcomes; however, a multi-informant assessment may be the most comprehensive approach for evaluating current functioning and identifying service needs in this population. Lay Abstract Self-report measures are frequently used for research and clinical assessments of adults with autism spectrum disorder. However, there has been little research examining agreement between self-report and informant-report in this population. Valid self-report measures are essential for conducting research with and providing high quality clinical services for adults with autism spectrum disorder. This study collected measures from 40 pairs of adults with autism spectrum disorder and their caregivers on measures of symptom severity, daily living skills, quality of life, and unmet service needs. Caregiver and self-report responses were highly associated with one another on all measures, though there were significant gaps between scores on the measures of daily living skills and quality of life. It is also important to understand how each informant’s responses relate to outcomes in the areas of employment and independent living. Using self-report and caregiver-report together better predicted outcomes for the adult with autism spectrum disorder than scores from either individual reporter alone. These findings show that there is unique and valuable information provided by both adults with autism spectrum disorder and their caregivers; a multi-informant approach is important for obtaining the most comprehensive picture of current functioning, identifying unmet service needs, and creating treatment plans. This research also highlights the importance of including and prioritizing self-report perspectives in shaping service planning.

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“…Similarly, of 18 peer-reviewed articles identified reporting on results from longitudinal studies of adults with ASD, 15 articles drew on data from participants initially recruited in childhood. The remaining three studies had recruited adult participants, however none reported on the effectiveness of the recruitment approaches used or factors influencing participation (Cederlund, Hagberg, Billstedt, I. Gillberg, & C. Gillberg, 2008;Gerber et al, 2011;Madriaga, 2010).…”

Section: Engaging Adults With Asd In Longitudinal Researchmentioning

confidence: 99%

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Haas

Costley

Falkmer

et al. 2016

J Autism Dev Disord

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Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life

Cited by 34 publications

References 64 publications

Parental perceptions of the oral health‐related quality of life of autistic children in Saudi Arabia

Parental perceptions of the oral health‐related quality of life of autistic children in Saudi Arabia

Assessing the convergence of self-report and informant measures for adults with autism spectrum disorder

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

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