Quality of life in autism across the lifespan: A meta-analysis

Autism is a lifelong neurodevelopmental disorder, with a known impact on quality of life. Yet the developmental trajectory of quality of life is not well understood. First, the effect of age on quality of life was studied with a meta-analysis. Our meta-analysis included 10 studies (published between 2004 and 2012) with a combined sample size of 486 people with autism and 17,776 controls. Second, as there were no studies on quality of life of the elderly with autism, we conducted an empirical study on quality of life of the elderly (age range 53–83) with autism (N = 24) and without autism (N = 24). The meta-analysis showed that quality of life is lower for people with autism compared to people without autism, and that the mean effect is large (Cohen’s d = −0.96). Age did not have an effect on quality of life. The study concerning the elderly with autism showed that the difference in quality of life is similar in the elderly. Age, IQ and symptom severity did not predict quality of life in this sample. Across the lifespan, people with autism experience a much lower quality of life compared to people without autism. Hence, the quality of life seemed to be independent of someone’s age.

[1]  J. Magill-Evans,et al.  The quality of life of young men with Asperger syndrome , 2006, Autism : the international journal of research and practice.

[2]  Catherine Lord,et al.  Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder , 2007, Journal of autism and developmental disorders.

[3]  C. Barthélémy,et al.  Quality of life of adolescents with autism spectrum disorders: comparison to adolescents with diabetes , 2012, European Child & Adolescent Psychiatry.

[4]  W. A. Arrindell,et al.  SCL-90. Handleiding bij een multidimensionele psychopathologie-indicator , 2003 .

[5]  J. Jolles,et al.  Prevalence and Covariates of Subjective Forgetfulness in a Normal Population in the Netherlands , 1997, International journal of aging & human development.

[6]  Elderly with Autism: Executive Functions and Memory , 2011, Journal of autism and developmental disorders.

[7]  F. Happé,et al.  Aging in Autism Spectrum Disorders: A Mini-Review , 2011, Gerontology.

[8]  Wolfgang Viechtbauer,et al.  Conducting Meta-Analyses in R with the metafor Package , 2010 .

[9]  I. V. Viniarskaia [Quality of life in children]. , 2006, Problemy sotsial'noi gigieny, zdravookhraneniia i istorii meditsiny.

[10]  John E. Ware,et al.  SF-36 Health Survey Update , 2000, Spine.

[11]  J. Varni,et al.  Health-Related Quality of Life and Cognitive Functioning from the Perspective of Parents of School-Aged Children with Asperger’s Syndrome Utilizing the PedsQL™ , 2009, Journal of autism and developmental disorders.

[12]  S. Skevington,et al.  The World Health Organization's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A Report from the WHOQOL Group , 2004, Quality of Life Research.

[13]  Peter R Hobson,et al.  Foundations for self-awareness: An exploration through autism. , 2006, Monographs of the Society for Research in Child Development.

[14]  João Maroco,et al.  Quality of life in patients with mild cognitive impairment , 2013, Aging & mental health.

[15]  E. Perrin,et al.  Quality of Life in Adolescents With Autism Spectrum Disorders: Reliability and Validity of Self-Reports , 2011, Journal of developmental and behavioral pediatrics : JDBP.

[16]  Herbert Roeyers,et al.  Quality of life in high-functioning adults with autism spectrum disorder , 2006, Autism : the international journal of research and practice.

[17]  W. Thalheimer,et al.  How to calculate effect sizes from published research: A simplified methodology , 2002 .

[18]  Peter F. Gerhardt,et al.  Addressing the Needs of Adolescents and Adults with Autism: A Crisis on the Horizon , 2011, Journal of Contemporary Psychotherapy.

[19]  Gael Orsmond,et al.  The Symptoms of Autism Spectrum Disorders in Adolescence and Adulthood , 2003, Journal of autism and developmental disorders.

[20]  B. Schmand,et al.  Nederlandse leestest voor volwassenen , 2012 .

[21]  C. L. Callahan,et al.  The quality of life. , 1970, Nursing outlook.

[22]  L. Eaves,et al.  Young Adult Outcome of Autism Spectrum Disorders , 2008, Journal of autism and developmental disorders.

[23]  C. Blanco,et al.  The lifetime impact of attention deficit hyperactivity disorder: results from the National Epidemiologic Survey on Alcohol and Related Conditions (NESARC) , 2011, Psychological Medicine.

[24]  Yoko Kamio,et al.  A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders , 2013, Autism : the international journal of research and practice.

[25]  J. Higgins Cochrane handbook for systematic reviews of interventions. Version 5.1.0 [updated March 2011]. The Cochrane Collaboration , 2011 .

[26]  P. Wehman,et al.  Changes in the quality of autistic people's life that work in supported and sheltered employment. A 5-year follow-up study , 2002 .

[27]  E. Perry,et al.  Ageing in people with autistic spectrum disorder , 2012, International journal of geriatric psychiatry.

[28]  H. Geurts,et al.  A retrospective chart study: The pathway to a diagnosis for adults referred for ASD assessment , 2012, Autism.

[29]  Madhukar H. Trivedi,et al.  The pattern of sensory processing abnormalities in autism , 2006, Autism : the international journal of research and practice.

[30]  T. Clemons,et al.  Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network , 2010, Journal of autism and developmental disorders.

[31]  Foundations for self-awareness , 2006 .

[32]  R. Hobson DEVELOPING SELF/OTHER AWARENESS: A REPLY , 2006 .

[33]  D. Hare,et al.  Providing Care for adults with Autistic Spectrum Disorders in Learning Disability Services: Needs-based or Diagnosis-driven? , 2005 .

[34]  J. Constantino,et al.  Intergenerational transmission of subthreshold autistic traits in the general population , 2005, Biological Psychiatry.

[35]  M. Sigman,et al.  Continuity and change from early childhood to adolescence in autism. , 2005, Journal of child psychology and psychiatry, and allied disciplines.

[36]  S. Gutstein,et al.  Quality of Life for People with Autism: Raising the Standard for Evaluating Successful Outcomes. , 2007, Child and adolescent mental health.

[37]  Penney Upton,et al.  Parent–child agreement across child health-related quality of life instruments: a review of the literature , 2008, Quality of Life Research.

[38]  G. Niebler,et al.  ADHD burden of illness in older adults: a life course perspective , 2012, Quality of Life Research.

[39]  Robert M. Bernard,et al.  Calculating and Synthesizing Effect Sizes , 2006 .

[40]  Julian P. T. Higgins,et al.  Selecting Studies and Collecting Data , 2008 .

[41]  Wen-Chung Wang,et al.  Validating, Improving Reliability, and Estimating Correlation of the Four Subscales in the WHOQOL-BREF using Multidimensional Rasch Analysis , 2006, Quality of Life Research.

[42]  I. Nyklíček,et al.  Mindfulness-based therapy in adults with an autism spectrum disorder: a randomized controlled trial. , 2013, Research in developmental disabilities.

[43]  D. Broadbent,et al.  The Cognitive Failures Questionnaire (CFQ) and its correlates. , 1982, The British journal of clinical psychology.

[44]  Jay Brand,et al.  File Drawer Problem , 2022, The SAGE Encyclopedia of Research Design.

[45]  D. Courvoisier,et al.  Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life. , 2011, Journal of intellectual disability research : JIDR.

[46]  M. Rutter,et al.  Cognitive and language skills in adults with autism: a 40-year follow-up. , 2014, Journal of child psychology and psychiatry, and allied disciplines.

[47]  A. V. Hofe,et al.  Sensitivity to everyday failures and cognitive inhibition: Are they related? , 1998 .

[48]  J. Lindeboom,et al.  Reading ability as an estimator of premorbid intelligence: does it remain stable in emergent dementia? , 1998, Journal of clinical and experimental neuropsychology.

[49]  J. Dattilo,et al.  Effects of a leisure programme on quality of life and stress of individuals with ASD. , 2010, Journal of intellectual disability research : JIDR.

[50]  Shannon A. Johnson,et al.  Discrepancies Between Self- and Parent-Perceptions of Autistic Traits and Empathy in High Functioning Children and Adolescents on the Autism Spectrum , 2009, Journal of autism and developmental disorders.

[51]  H. Koot,et al.  Quality of life in children with psychiatric disorders: self-, parent, and clinician report. , 2004, Journal of the American Academy of Child and Adolescent Psychiatry.

[52]  M. Seltzer,et al.  Age-Related Differences in Restricted Repetitive Behaviors in Autism Spectrum Disorders , 2009, Journal of autism and developmental disorders.

[53]  R. Rosenthal The file drawer problem and tolerance for null results , 1979 .

[54]  Paul Shattuck,et al.  Trajectory of development in adolescents and adults with autism. , 2004, Mental retardation and developmental disabilities research reviews.

[55]  H. Remschmidt,et al.  Health-related quality of life in children and adolescents with autism spectrum disorder. , 2011, Zeitschrift fur Kinder- und Jugendpsychiatrie und Psychotherapie.

[56]  S. Baron-Cohen,et al.  Self-Referential Cognition and Empathy in Autism , 2007, PloS one.

[57]  Christopher Gillberg,et al.  Autism after Adolescence: Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood , 2005, Journal of autism and developmental disorders.

[58]  S. Bryson,et al.  Predictors of outcome among high functioning children with autism and Asperger syndrome. , 2003, Journal of Child Psychology and Psychiatry and Allied Disciplines.

[59]  M. Rutter,et al.  Adult outcome for children with autism. , 2004, Journal of child psychology and psychiatry, and allied disciplines.

[60]  H. Remschmidt,et al.  Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder , 2010, Psycho-social medicine.

[61]  S. Saxena,et al.  The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. , 1995, Social science & medicine.

[62]  H. McConachie,et al.  Finding out what matters: validity of quality of life measurement in young people with ASD. , 2013, Child: care, health and development.

[63]  Christine Eiser,et al.  Can parents rate their child's health-related quality of life? Results of a systematic review , 2004, Quality of Life Research.

[64]  E. Perrin,et al.  Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports , 2012, Quality of Life Research.