Advertisement

Patterns of Continuity and Change in the Psychosocial Outcomes of Young Autistic People: a Mixed-Methods Study

  • Elizabeth PellicanoEmail author
  • Serena Cribb
  • Lorcan Kenny
Article

Abstract

Long-term longitudinal studies have consistently demonstrated that the outcomes of autistic individuals are highly variable. Yet, these studies have typically focused on aspects of functioning deemed to be critical by non-autistic researchers, rather than autistic people themselves. Here, we uniquely examined the long-term psychosocial outcomes of a group of young autistic people (n = 27; M age = 17 years; 10 months; 2 female) followed from childhood using a combination of approaches, including (1) the standard, normative approach, which examined changes in diagnostic outcomes, autistic features and adaptive functioning over a 9-year period and (2) a qualitative approach, which involved semi-structured interviews to understand young people’s own subjective experiences of their current functioning. On average, there was no significant change in young people’s diagnostic outcomes and autistic features over the 9-year period, although there was much variability at the individual level. There was far less variability, however, in young people’s everyday functioning, with marked declines over the same period. While these often-substantial everyday challenges aligned well with young people’s subjective reports, there was no straightforward one-to-one mapping between self-reported experiences of being autistic and standard measures of severity. These findings call for concerted efforts to understand autistic outcomes through the mixing of quantitative and qualitative reports and for sustained and targeted interventions during adolescence in those areas that matter most to young people themselves.

Keywords

Autism Longitudinal Outcomes Emergent adulthood Development 

Notes

Acknowledgements

We are extremely grateful to the young people and their parents for continuing to be so generous with their time over the years, and to Marc Stears for enormously helpful comments on previous versions of this manuscript. This research was supported in part by funds from the School of Psychology at the University of Western Australia and in part by a 2015 Philip Leverhulme Prize awarded to EP by the UK’s Leverhulme Trust.

Compliance with Ethical Standards

Conflict of Interest

We have no conflicts of interest of which we are aware.

Ethical Approval

Ethical approval for this study was granted by the Human Research Ethics Office at the University of Western Australia (RA/4/1/6992).

Supplementary material

10802_2019_602_MOESM1_ESM.docx (21 kb)
ESM 1 (DOCX 21 kb)
10802_2019_602_MOESM2_ESM.docx (23 kb)
ESM 2 (DOCX 22 kb)

References

  1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.Google Scholar
  2. Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism. Journal of Child Psychology and Psychiatry, 55, 485–494.PubMedCrossRefGoogle Scholar
  3. Bellini, S., Peters, J. K., Benner, L., & Hopf, A. (2007). A meta-analysis of school-based social skills interventions for children with autism. Remedial and Special Education, 28, 153–162.CrossRefGoogle Scholar
  4. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15, 7–20.CrossRefGoogle Scholar
  5. Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterising objective quality of life and normative outcomes in adults with autism: An exploratory latent class analysis. Journal of Autism and Dev Disorders, 46, 2707–2719.CrossRefGoogle Scholar
  6. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRefGoogle Scholar
  7. Bruner, J. (1990). Acts of meaning. Cambridge: Harvard University Press.Google Scholar
  8. Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of autism acceptance and mental health in autistic adults. Journal of Autism and Developmental Disorders, 48, 473–484.PubMedCrossRefGoogle Scholar
  9. Chowdhury, M., Benson, B. A., & Hillier, A. (2010). Changes in restricted repetitive behaviors with age: A study of high-functioning adults with autism spectrum disorders. Research in Autism Spectrum Disorders, 4, 210–216.CrossRefGoogle Scholar
  10. Cooper, K., Smith, L., & Russell, A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47, 844–854.CrossRefGoogle Scholar
  11. Creswell, J. W., & Zhang, W. (2009). The application of mixed methods designs to trauma research. Journal of Tramatic Stress, 22, 612–621.Google Scholar
  12. Cribb, S., Kenny, L., & Pellicano, E. (2019). “I definitely feel more in control of my life”: The perspectives of young autistic people and their parents on emerging adulthood. Autism, 23, 1765–1781.CrossRefGoogle Scholar
  13. Dekker, M. (1999). On our own terms: Emerging autistic culture. http://www.autscape.org/2015/programme/handouts/Autistic-Culture-07-Oct-1999.pdf.
  14. Demetriou, E. A., Lampit, A., Quintana, D. S., Naismith, S. L., Song, Y. J. C., Pye, J. E., Hickie, I., & Guastella, A. J. (2017). Autism spectrum disorders: A meta-analysis of executive function. Molecular Psychiatry, 23, 1198–1204.PubMedCentralCrossRefPubMedGoogle Scholar
  15. Duncan, A. W., & Bishop, S. L. (2015). Understanding the gap between cognitive abilities and daily living skills in adolescents with autism with average intelligence. Autism, 19, 64–72.PubMedCrossRefGoogle Scholar
  16. Dunn, L. M., & Dunn, L. M. (1997). Peabody picture vocabulary test (3rd ed.). Circle Pines: American Guidance Service.Google Scholar
  17. Fein, D., Barton, M., Eigsti, I., Kelley, E., Naigles, L., Schultz, R. T., Stevens, M., Helt, M., Orinstein, A., Rosenthal, M., Troyb, E., & Tyson, K. (2013). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 195–205.PubMedCrossRefGoogle Scholar
  18. Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Cusack, J., Crane, L., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2018). Making the future together: Shaping autism research through meaningful participation. Autism.  https://doi.org/10.1177/1362361318786721.PubMedCentralCrossRefPubMedGoogle Scholar
  19. Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, 438.PubMedCentralCrossRefPubMedGoogle Scholar
  20. Gotham, K., Pickles, A., & Lord, C. (2009). Standardizing ADOS scores for a measure of severity in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 693–705.CrossRefGoogle Scholar
  21. Gotham, K., Pickles, A., & Lord, C. (2012). Trajectories of autism severity in children using standardized ADOS scores. Pediatrics, 130, e1278–e1284.PubMedPubMedCentralCrossRefGoogle Scholar
  22. Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. (1995). The second shock: a qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life. Journal of the Association for Persons with Severe Disabilities, 20, 3–15.Google Scholar
  23. Henninger, N. A., & Taylor, J. L. (2014). Family perspectives on a successful transition to adulthood for individuals with disabilities. Intellectual and Developmental Disabilities, 52, 98–111.PubMedPubMedCentralCrossRefGoogle Scholar
  24. Howlin, P., Mawhood, L., & Rutter, M. (2000). Autism and developmental receptive language disorder—A follow-up comparison in early adult life. II: Social, behavioural and psychiatric outcomes. Journal of Child Psychology and Psychiatry, 41, 561–578.Google Scholar
  25. Howlin, P., Goode, S., Hutton, J., & Rutter,M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229.Google Scholar
  26. Howlin, P., & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry, 30, 69–76.PubMedCrossRefGoogle Scholar
  27. Howlin, P., Moss, P., Savage, S., & Rutter, M. (2013). Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. Journal of the American Academy of Child and Adolescent Psychiatry, 52, 572–581.e571.PubMedCrossRefGoogle Scholar
  28. Hus, V., & Lord, C. (2014). The ADOS, module 4: Revised algorithm and standardized severity scores. Journal of Autism and Developmental Disorders, 44, 1996–2012.PubMedCentralCrossRefPubMedGoogle Scholar
  29. Jacobson, N. S., & Truax, P. (1991). Clinical significance: A statistical approach to defining meaningful change in psychotherapy research. Journal of Consulting & Clinical Psychology, 59, 12–19.CrossRefGoogle Scholar
  30. Kanne, S. M., Gerber, A. J., Quirmbach, L. M., Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2011). The role of adaptive behavior in autism spectrum disorders: Implications for functional outcome. Journal of Autism and Developmental Disorders, 41, 1007–1018.PubMedCrossRefPubMedCentralGoogle Scholar
  31. Kelley, E., Paul, J. J., Fein, D., & Naigles, L. R. (2006). Residual language deficits in optimal outcome children with a history of autism. Journal of Autism and Developmental Disorders, 36, 807–828.PubMedCrossRefPubMedCentralGoogle Scholar
  32. Kenny, L., Cribb, S., & Pellicano, E. (2019). Childhood executive function predicts later autistic features and adaptive behaviours in young autistic people: A 12-year prospective study. Journal of Abnormal Child Psychology, 47, 1089–1099.PubMedCrossRefGoogle Scholar
  33. Kenworthy, L., Anthony, L. G., Naiman, D. Q., Cannon, L., Wills, M. C., Luong-Tran, C., Werner, M. A., Alexander, K. C., Strang, J., Bal, E., Sokoloff, J. L., & Wallace, G. L. (2014). Randomized controlled effectiveness trial of executive function intervention for children on the autism spectrum. Journal of Child Psychology and Psychiatry, 55, 374–383.PubMedCrossRefPubMedCentralGoogle Scholar
  34. Klin, A., Saulnier, C. A., Sparrow, S. S., Cicchetti, D. V., Volkmar, F. R., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism: The Vineland and the ADOS. Journal of Autism and Developmental Disorders, 37, 748–759.PubMedCrossRefGoogle Scholar
  35. Krug, D. A., Arick, J., & Almond, P. (1980). Behaviour checklist for identifying severely handicapped individuals with high levels of autistic behaviour. Journal of Child Psychology and Psychiatry, 2, 221–229.CrossRefGoogle Scholar
  36. Liberatos, P., Link, B. G., & Kelsey, J. L. (1987). The measurement of social class in epidemiology. Epidemiologic Reviews, 10, 87–121.Google Scholar
  37. Liss, M., Harel, B., Fein, D., Allen, D., Dunn, M., Feinstein, C., Morris, R., Waterhouse, L., & Rapin, I. (2001). Predictors and correlates of adaptive functioning in children with developmental disorders. Journal of Autism and Developmental Disorders, 31, 219–230.CrossRefGoogle Scholar
  38. Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism diagnostic observation schedule—Generic. Los Angeles: WPS.Google Scholar
  39. Lord, C., Rutter, M., DiLavore, P., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule–2nd edition (ADOS-2). Los Angeles: WPS.Google Scholar
  40. Lord, C., Bishop, S., & Anderson, D. (2015). Developmental trajectories as autism phenotypes. American Journal of Medical Genetics Part C, 169C, 198–208.CrossRefGoogle Scholar
  41. Makin, C., Hill, V., & Pellicano, E. (2017). The primary-to-secondary school transition for children on the autism spectrum: A multi-informant mixed-methods study. Autism and Developmental Language Impairments, 2, 1–18.CrossRefGoogle Scholar
  42. Milton, D., & Sims, T. (2016). How is a sense of well-being and belonging constructed in the accounts of autistic adults? Disability & Society, 31, 520–534.CrossRefGoogle Scholar
  43. Milton, D., Mills, R., & Pellicano, E. (2014). Ethics and autism: Where is the autistic voice? Commentary on post et al. Journal of Autism and Developmental Disorders, 44, 2650–2651.PubMedCrossRefGoogle Scholar
  44. Müller, E., & Cannon, L. (2016). Parent perspectives on outcomes and satisfaction levels of young adults with autism and cognitive impairments. Focus on Autism and Other Developmental Disabilities, 31, 92–103.CrossRefGoogle Scholar
  45. Mussweiler, T. (2003). Comparison processes in social judgement: Mechanisms and consequences. Psychological Review, 110, 472–489.PubMedCrossRefGoogle Scholar
  46. Ne’eman, A. (2011). Question and answer interview http://www.talkaboutautism.org.uk/page/liveevents/arineeman.cfm.
  47. Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E. V., Kapp, S. K., Weiner, M., & Boisclair, E. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19, 824–831.PubMedPubMedCentralCrossRefGoogle Scholar
  48. Orinstein, A., Tyson, K. E., Suh, J., Troyb, E., Helt, M., Rosenthal, M., Barton, M. L., Eigsti, I. M., Kelley, E., Naigles, L., Schultz, R. T., Stevens, M. C., & Fein, D. A. (2015). Psychiatric symptoms in youth with a history of autism and optimal outcome. Journal of Autism and Developmental Disorders, 45, 3703–3714.PubMedPubMedCentralCrossRefGoogle Scholar
  49. Pellicano, E., Maybery, M., Durkin, K., & Maley, A. (2006). Multiple cognitive capabilities/deficits in children with an autism spectrum disorder: ‘Weak’ central coherence and its relationship to theory of mind and executive control. Development and Psychopathology, 18, 77–98.Google Scholar
  50. Pellicano, E. (2010a). The development of core cognitive skills in autism: A 3-year prospective study. Child Development, 81, 1400–1416.PubMedCrossRefGoogle Scholar
  51. Pellicano, E. (2010b). Individual differences in executive function and central coherence predict developmental changes in theory of mind in autism. Developmental Psychology, 46, 530–544.PubMedCrossRefGoogle Scholar
  52. Pellicano, E. (2012). Do autistic symptoms persist across time? Evidence of substantial change in symptomatology over a 3-year period in cognitively able children with autism. American Journal on Intellectual and Developmental Disabilities, 117, 156–166.PubMedCrossRefGoogle Scholar
  53. Piven, J., Harper, J., Palmer, P., & Arndt, S. (1996). Course of behavioral change in autism: A retrospective study of high-IQ adolescents and adults. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 523–529.PubMedCrossRefGoogle Scholar
  54. Pugliese, C. E., Anthony, L., Strang, J. F., Dudley, K., Wallace, G. L., & Kenworthy, L. (2015). Increasing adaptive behavior skill deficits from childhood to adolescence in autism spectrum disorder: Role of executive function. Journal of Autism and Developmental Disorders, 45, 1679–1587.Google Scholar
  55. Pugliese, C. E., Anthony, L. G., Strang, J. F., Dudley, K., Wallace, G. L., Naiman, D. Q., & Kenworthy, L. (2016). Longitudinal examination of adaptive behavior in autism spectrum disorders. Journal of Autism and Developmental Disorders, 46, 467–477.PubMedPubMedCentralCrossRefGoogle Scholar
  56. Pugliese, C. E., Skapek, M. F., Powers, M. D., Saldana, L., Anthony, L., & Kenworthy, L. (2019). Preliminary outcomes of a new executive function treatment for transition-age youth with ASD. Poster presented at INSAR, Montreal, May 2019.Google Scholar
  57. Roid, G. H., & Miller, L. J. (1997). Leiter international performance scale—Revised. Wood Dale: Stoelting.Google Scholar
  58. Ruble, L., & Dalrymple, N. (1996). An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities, 11, 3–14.CrossRefGoogle Scholar
  59. Shattuck, P. T., Roux, A. M., Hudson, L. E., Taylor, J. L., Maenner, M. J., & Trani, J. F. (2012). Services for adults with an autism spectrum disorder. The Canadian Journal of Psychiatry, 57, 284–291.PubMedCrossRefPubMedCentralGoogle Scholar
  60. Smith, L. E., Maenner, M. J., & Seltzer, M. M. (2012). Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academy of Child and Adolescent Psychiatry, 51, 622–631.PubMedCentralCrossRefGoogle Scholar
  61. Sparrow, S., Balla, D. A., & Cicchetti, D. (1984). Vineland adaptive behavior scales (expanded form). Circle Pine: American Guidance Service.Google Scholar
  62. Sparrow, S., Cicchetti, D., & Balla, D. A. (2005). Vineland adaptive behavior scales – Second edition: Survey forms manual. Minneapolis: Pearson.Google Scholar
  63. Steinhausen, H. C., Mohr Jensen, C., & Lauritsen, M. B. (2016). A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta Psychiatrica Scandinavica, 133, 445–452.CrossRefGoogle Scholar
  64. Strang, J. L., Anthony, L., Pugliese, C. E., Cannon, L., … & Kenworthy, L. (2018). Improving the executive functioning of adolescents with ASD through school-based intervention: the On Target for Life curriculum. Paper presented at IMFAR, Rotterdam, May 2018.Google Scholar
  65. Szatmari, P., Bartolucci, G., Bremner, R. S., Bond, S., & Rich, S. (1989). A follow-up study of high functioning autistic children. Journal of Autism and Developmental Disorders, 19, 213–226.PubMedCrossRefPubMedCentralGoogle Scholar
  66. Szatmari, P., Bryson, S., Duku, E., Vaccarella, L., Zwaigenbaum, L., Bennett, T., & Boyle, M. H. (2009). Similar developmental trajectories in autism and Asperger syndrome: From early childhood to adolescence. Journal of Child Psychology and Psychiatry, 50, 1459–1467.PubMedCrossRefGoogle Scholar
  67. 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, 1431–1446.PubMedCentralCrossRefPubMedGoogle Scholar
  68. 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, 566–574.PubMedPubMedCentralCrossRefGoogle Scholar
  69. Taylor, J. L., Henninger, N. A., & Mailick, M. R. (2015). Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ. Autism, 19, 785–793.PubMedPubMedCentralCrossRefGoogle Scholar
  70. van Heijst, B. C., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: A meta-analysis. Autism, 19, 158–167.CrossRefGoogle Scholar
  71. Wechsler, D. (2011). Wechsler abbreviated scale of intelligence – Second edition manual. Bloomington: Pearson.Google Scholar
  72. Williams, E. I., Gleeson, K., & Jones, B. E. (2019). How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting. Autism, 23, 8–28.PubMedCrossRefPubMedCentralGoogle Scholar
  73. Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (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, 176–189.PubMedPubMedCentralCrossRefGoogle Scholar
  74. Woolfenden, S., Sarkozy, V., Ridley, G., & Williams, K. (2012). A systematic review of the diagnostic stability of autism spectrum disorder. Research in Autism Spectrum Disorders, 6, 345–354.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Educational StudiesMacquarie UniversitySydneyAustralia
  2. 2.School of PsychologyUniversity of Western AustraliaPerthAustralia
  3. 3.Centre for Research in Autism and Education (CRAE), UCL Institute of EducationUniversity College LondonLondonUK

Personalised recommendations