Skip to main content

Advertisement

SpringerLink
Log in

Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

Abstract

This study aims to extend the definition of quality of life (QoL) for adults with autism spectrum disorder (ASD, n = 180, ages 23–60) by: (1) characterizing the heterogeneity of normative outcomes (employment, independent living, social engagement) and objective QoL (physical health, neighborhood quality, family contact, mental health issues); and (2) identifying predictors of positive normative outcomes and good objective QoL. Findings of an exploratory latent class analysis identified three groups of adults with ASD–Greater Dependence, Good Physical and Mental Health, and Greater Independence. Findings indicate that better daily living skills, better executive function, and more maternal warmth are associated with assignment to better outcome groups. Findings have implications for interventions designed to enhance achievement of normative outcomes and objective QoL.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Agresti, A. (2002). Categorical data analysis (2nd ed.). Hoboken, NJ: Wiley.

    Book  Google Scholar 

  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Association.

    Google Scholar 

  • Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 55(5), 485–494.

    Article  PubMed  Google Scholar 

  • Bandeen-Roche, K., Miglioretti, D. L., Zeger, S. L., & Rathouz, P. J. (1997). Latent variable regression for multiple discrete outcomes. Journal of the American Statistical Association, 92(440), 1375–1386.

    Article  Google Scholar 

  • Bishop-Fitzpatrick, L., Minshew, N. J., & Eack, S. M. (2013). A systematic review of psychosocial interventions for adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(3), 687–694.

    Article  PubMed  PubMed Central  Google Scholar 

  • CDC. (2014). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Surveillance Summaries, MMWR 2012, 63(SS02), 1–21.

  • Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I., & Gillberg, C. (2008). Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorders, 38(1), 72–85.

    Article  PubMed  Google Scholar 

  • Celeux, G., & Soromenho, G. (1996). An entropy criterion for assessing the number of clusters in a mixture model. Journal of Classification, 13(2), 195–212.

    Article  Google Scholar 

  • Cicchetti, D., & Rogosch, F. A. (1996). Equifinality and multifinality in developmental psychopathology. Development and Psychopathology, 8(04), 597–600.

    Article  Google Scholar 

  • Cooney, B. F. (2002). Exploring perspectives on transition of youth with disabilities: Voices of young adults, parents, and professionals. Mental Retardation, 40(6), 425–435.

    Article  PubMed  Google Scholar 

  • Dempster, A. P., Laird, N. M., & Rubin, D. B. (1977). Maximum likelihood from incomplete data via the EM algorithm. Journal of the Royal Statistical Society, 39(1), 1–38.

    Google Scholar 

  • Dziak, J. J., Lanza, S. T., & Tan, Z. (2014). Effect size, statistical power and sample size requirements for the bootstrap likelihood ratio test in latent class analysis. Structural Equation Modeling, 21(4), 534–552.

    Article  PubMed  PubMed Central  Google Scholar 

  • Eaves, L., & Ho, H. (1996). Brief report: Stability and change in cognitive and behavioral characteristics of autism through childhood. Journal of Autism and Developmental Disorders, 26(5), 557–569.

    Article  PubMed  Google Scholar 

  • Farley, M. A., & McMahon, B. (2014). Range of outcomes and challenges in middle and later life. In F. R. Volkmar, B. Reichow, & J. C. McPartland (Eds.), Adolescents and adults with autism spectrum disorders (pp. 211–238). New York: Springer.

    Chapter  Google Scholar 

  • Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51–74.

    Article  PubMed  Google Scholar 

  • Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2000). Behavior Rating Inventory of Executive Function: BRIEF. Odessa, FL: Psychological Assessment Resources.

    Google Scholar 

  • Gioia, G. A., Isquith, P. K., Retzlaff, P. D., & Espy, K. A. (2002). Confirmatory factor analysis of the Behavior Rating Inventory of Executive Function (BRIEF) in a clinical sample. Child Neuropsychology, 8(4), 249–257.

    Article  PubMed  Google Scholar 

  • Glutting, J., Adams, W., & Sheslow, D. (2000). Wide Range Intelligence Test: WRIT. Wilmington, DE: Wide Range.

    Google Scholar 

  • Greenberg, J. S., Seltzer, M. M., Hong, J., & Orsmond, G. I. (2006). Bidirectional effects of expressed emotion and behavior problems and symptoms in adolescents and adults with autism. American Journal on Mental Retardation, 111(4), 229–249.

    Article  PubMed  Google Scholar 

  • Hagenaars, J. A., & McCutcheon, A. L. (2002). Applied latent class analysis. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  • Haughton, D., Legrand, P., & Woolford, S. (2009). Review of three latent class cluster analysis packages: Latent Gold, poLCA, and MCLUST. The American Statistician, 63(1), 81–91.

    Article  Google Scholar 

  • Hill, A., Bölte, S., Petrova, G., Beltcheva, D., Tacheva, S., & Poustka, F. (2001). Stability and interpersonal agreement of the interview-based diagnosis of autism. Psychopathology, 34(4), 187–191.

    Article  PubMed  Google Scholar 

  • Honaker, J., King, G., & Blackwell, M. (2011). Amelia II: A program for missing data. Journal of Statistical Software, 45(7), 1–47.

    Article  Google Scholar 

  • Hosmer, D. W., Lemeshow, S., & Sturdivant, R. X. (2013). Applied logistic regression (3rd ed.). Hoboken, NJ: Wiley.

    Book  Google Scholar 

  • Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212–229.

    Article  PubMed  Google Scholar 

  • Idler, E. L., & Benyamini, Y. (1997). Self-rated health and mortality: A review of twenty-seven community studies. Journal of Health and Social Behavior, 38(1), 21–37.

    Article  PubMed  Google Scholar 

  • Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders, 5(4), 1271–1282.

    Article  Google Scholar 

  • Linzer, D. A., & Lewis, J. B. (2011). poLCA: An R package for polytomous variable latent class analysis. Journal of Statistical Software, 42(10), 1–29.

    Article  Google Scholar 

  • Lord, C., Pickles, A., McLennan, J., Rutter, M., Bregman, J., Folstein, S., et al. (1997). Diagnosing autism: Analyses of data from the Autism Diagnostic Interview. Journal of Autism and Developmental Disorders, 27(5), 501–517.

    Article  PubMed  Google Scholar 

  • Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism Diagnostic Interview-Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659–685.

    Article  PubMed  Google Scholar 

  • Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8–17.

    Article  PubMed  Google Scholar 

  • Magaña, A. B., Goldstein, M. J., Karno, M., Miklowitz, D. J., Jenkins, J., & Falloon, I. R. H. (1986). A brief method for assessing expressed emotion in relatives of psychiatric patients. Psychiatry Research, 17(3), 203–212.

    Article  PubMed  Google Scholar 

  • Roth, R. M., Isquith, P. K., & Gioia, G. A. (2005). Behavior Rating Inventory of Executive Function-Adult version (BRIEF-A). Lutz, FL: Psychological Assessment Resources.

    Google Scholar 

  • Ruble, L. A., & Dalrymple, N. J. (1996). An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities, 11(1), 3–14.

    Article  Google Scholar 

  • Schafer, J. L., & Graham, J. W. (2002). Missing data: Our view of the state of the art. Psychological Methods, 7(2), 147–177.

    Article  PubMed  Google Scholar 

  • Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203–216.

    Article  PubMed  Google Scholar 

  • Schlomer, G. L., Bauman, S., & Card, N. A. (2010). Best practices for missing data management in counseling psychology. Journal of Counseling Psychology, 57(1), 1.

    Article  PubMed  Google Scholar 

  • Seltzer, M. M., Greenberg, J. S., Taylor, J. L., Smith, L. E., Orsmond, G. E., Esbensen, A., et al. (2011). Adolescents and adults with autism spectrum disorders. In D. G. Amaral, G. Dawson, & D. Geschwind (Eds.), Autism spectrum disorders (pp. 241–252). New York: Oxford University Press.

    Chapter  Google Scholar 

  • Seltzer, M. M., Shattuck, P. T., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234–247.

    Article  PubMed  Google Scholar 

  • Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2012). Adults with autism: Outcomes, family effects, and the multi-family group psychoeducation model. Current Psychiatry Reports, 14(6), 732–738.

    Article  PubMed  PubMed Central  Google Scholar 

  • Smith, L. E., Greenberg, J. S., Seltzer, M. M., & Hong, J. (2008). Symptoms and behavior problems of adolescents and adults with autism: Effects of mother–child relationship quality, warmth, and praise. American Journal of Mental Retardation, 113(5), 387–402.

    Article  PubMed  PubMed Central  Google Scholar 

  • Sparrow, S., Carter, A., & Cicchetti, D. (1993). Vineland screener: Overview, reliability, validity, administration, and scoring. New Haven, CT: Yale University Child Study Center.

    Google Scholar 

  • Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with autism spectrum disorder. Autism, 9(4), 362–376.

    Article  PubMed  Google Scholar 

  • Taylor, J. L., & Seltzer, M. M. (2010). Changes in the autism behavioral phenotype during the transition to adulthood. Journal of Autism and Developmental Disorders, 40(12), 1431–1446.

    Article  PubMed  PubMed Central  Google Scholar 

  • Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566–574.

    Article  PubMed  PubMed Central  Google Scholar 

  • Taylor, J. L., Smith, L. E., & Mailick, M. R. (2014). Engagement in vocational activities promotes behavioral development for adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(6), 1447–1460.

    Article  PubMed  PubMed Central  Google Scholar 

  • Vaughn, C., & Leff, J. (1976). The measurement of expressed emotion in the families of psychiatric patients. British Journal of Social and Clinical Psychology, 15(2), 157–165.

    Article  PubMed  Google Scholar 

  • Weden, M. M., Carpiano, R. M., & Robert, S. A. (2008). Subjective and objective neighborhood characteristics and adult health. Social Science and Medicine, 66(6), 1256–1270.

    Article  PubMed  Google Scholar 

  • Woodman, A., Smith, L., Greenberg, J., & Mailick, M. (2016). Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 176–189.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This study was supported by grants from the National Institute on Aging (R01 AG08768, Marsha R. Mailick, PI), the National Institute of Child Health and Human Development (T32 HD07489, Marsha R. Mailick, PI), and Autism Speaks (7724, Marsha R. Mailick, PI). We are extremely grateful to the families who participated in this study; without their generous support and commitment, our research would not be possible. We are also grateful for the support we received from the Waisman Center (P30 HD03352, Albee Messing, PI).

Author Contributions

Dr. Bishop-Fitzpatrick conceptualized the analytic method, conducted the statistical analyses, developed composite case studies, wrote the initial draft of the manuscript, and revised the manuscript to address reviewer comments. Drs. Hong and Smith provided guidance on the design of the study and the statistical analyses and participated in the manuscript development and revisions. Ms. Makuch helped to conceptualize the three classes and composite case studies based on her extensive knowledge of study participants. Drs. Mailick and Greenberg designed the larger study from which the data were drawn, participated in the formulation of the research questions, provided consultation on statistical analyses, and participated in the manuscript development and revisions. Dr. Mailick is the lead PI of the study.

Author information

Authors and Affiliations

  1. Waisman Center, University of Wisconsin-Madison, 1500 Highland Ave., Madison, WI, 53705, USA

    Lauren Bishop-Fitzpatrick, Jinkuk Hong, Leann E. Smith, Renee A. Makuch, Jan S. Greenberg & Marsha R. Mailick

Authors
  1. Lauren Bishop-Fitzpatrick
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jinkuk Hong
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Leann E. Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Renee A. Makuch
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Jan S. Greenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Marsha R. Mailick
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Lauren Bishop-Fitzpatrick.

Ethics declarations

Conflict of interest

Dr. Bishop-Fitzpatrick, Dr. Hong, Dr. Smith, Ms. Makuch, Dr. Greenberg, and Dr. Mailick declare that they have no conflict of interest.

Informed Consent

Informed consent was obtained from all individual participants included in this study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Bishop-Fitzpatrick, L., Hong, J., Smith, L.E. et al. Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis. J Autism Dev Disord 46, 2707–2719 (2016). https://doi.org/10.1007/s10803-016-2816-3

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-016-2816-3

Keywords

Search

Navigation