Skip to main content
Log in

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

  • Published:
Journal of Abnormal Child Psychology Aims and scope Submit manuscript

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.

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

Access this article

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  • American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.

    Google Scholar 

  • Bruner, J. (1990). Acts of meaning. Cambridge: Harvard University Press.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • Cooper, K., Smith, L., & Russell, A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47, 844–854.

    Google Scholar 

  • Creswell, J. W., & Zhang, W. (2009). The application of mixed methods designs to trauma research. Journal of Tramatic Stress, 22, 612–621.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Dekker, M. (1999). On our own terms: Emerging autistic culture. http://www.autscape.org/2015/programme/handouts/Autistic-Culture-07-Oct-1999.pdf.

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Dunn, L. M., & Dunn, L. M. (1997). Peabody picture vocabulary test (3rd ed.). Circle Pines: American Guidance Service.

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Gotham, K., Pickles, A., & Lord, C. (2012). Trajectories of autism severity in children using standardized ADOS scores. Pediatrics, 130, e1278–e1284.

    PubMed  PubMed Central  Google Scholar 

  • 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.

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

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

  • Howlin, P., & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry, 30, 69–76.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Hus, V., & Lord, C. (2014). The ADOS, module 4: Revised algorithm and standardized severity scores. Journal of Autism and Developmental Disorders, 44, 1996–2012.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • Liberatos, P., Link, B. G., & Kelsey, J. L. (1987). The measurement of social class in epidemiology. Epidemiologic Reviews, 10, 87–121.

  • 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.

    PubMed  Google Scholar 

  • Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism diagnostic observation schedule—Generic. Los Angeles: WPS.

    Google Scholar 

  • 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 

  • Lord, C., Bishop, S., & Anderson, D. (2015). Developmental trajectories as autism phenotypes. American Journal of Medical Genetics Part C, 169C, 198–208.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • Mussweiler, T. (2003). Comparison processes in social judgement: Mechanisms and consequences. Psychological Review, 110, 472–489.

    PubMed  Google Scholar 

  • Ne’eman, A. (2011). Question and answer interview http://www.talkaboutautism.org.uk/page/liveevents/arineeman.cfm.

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

  • Pellicano, E. (2010a). The development of core cognitive skills in autism: A 3-year prospective study. Child Development, 81, 1400–1416.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

  • Roid, G. H., & Miller, L. J. (1997). Leiter international performance scale—Revised. Wood Dale: Stoelting.

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

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • Sparrow, S., Balla, D. A., & Cicchetti, D. (1984). Vineland adaptive behavior scales (expanded form). Circle Pine: American Guidance Service.

    Google Scholar 

  • Sparrow, S., Cicchetti, D., & Balla, D. A. (2005). Vineland adaptive behavior scales – Second edition: Survey forms manual. Minneapolis: Pearson.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

  • 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.

    PubMed  Google Scholar 

  • 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.

    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, 1431–1446.

    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, 566–574.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • van Heijst, B. C., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: A meta-analysis. Autism, 19, 158–167.

    PubMed  Google Scholar 

  • Wechsler, D. (2011). Wechsler abbreviated scale of intelligence – Second edition manual. Bloomington: Pearson.

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    Google Scholar 

Download references

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.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Elizabeth Pellicano.

Ethics declarations

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).

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

ESM 1

(DOCX 21 kb)

ESM 2

(DOCX 22 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Pellicano, E., Cribb, S. & Kenny, L. Patterns of Continuity and Change in the Psychosocial Outcomes of Young Autistic People: a Mixed-Methods Study. J Abnorm Child Psychol 48, 301–313 (2020). https://doi.org/10.1007/s10802-019-00602-w

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10802-019-00602-w

Keywords

Navigation