Staying in the Nest: Experiences of mothers of autistic people in their children’s transition to adulthood
DOI:
https://doi.org/10.1590/0103-6564e240140Keywords:
autism, mothers, transition to adulthood, caregiversAbstract
The present article aims to explore the perceptions of mothers regarding the transition of their autistic children with support levels 2 and 3 from adolescence to adulthood. In a standard family life cycle, it is expected that the child, throughout their developmental stages, will seek greater autonomy and redefine their relationship with their caregivers. However, in atypical families, this process may occur differently than expected. A semi-structured interview was conducted with 11 caregivers of autistic adults from different states in Brazil, and the collected data were analyzed according to Bardin’s Content Analysis. According to the reports, it was found that self-injurious and hetero-aggressive behaviors decreased with the aging of the autistic individual, highlighting the need to continuously reinforce which behaviors are socially appropriate, as well as emphasize the unpreparedness of formal institutions to support autistic adults.
Downloads
References
American Psychiatric Association. (2019). Position Statement on Transitional Aged Youth. Washington, DC: APA.
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5a Ed.). Washington, DC: APA. doi: 10.1176/appi.books.9780890425787
Andolfi, M. (2019). A terapia familiar multgeracional: instrumentos e recursos do terapeuta. Belo Horizonte, MG: Ed. Artesã.
Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18(5), 562-570. doi: 10.1177/1362361313481860.
Andrade, A. A. E., Teodoro, M. L. M. (2012). Família e Autismo: Uma Revisão da Literatura. Contextos Clínicos, 5(2), 133-142. doi: 10.4013/ctc.2012.52.07
Ballan, M. S. (2012). Parental Perspectives of Communication about Sexuality in Families of Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 42, 676-684. doi: 10.1007/s10803-011-1293-y
Bardin, L. (2010). Análise de conteúdo. Lisboa: Edições 70.
Cheak-Zamora, N. C., Teti, M., First, J. (2015). “Transitions Are Scary for Our Kids, and They’re Scary for Us”: Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism. Journal of Applied Research in Intellectual Disabilities, 28(6), 548-560. doi: 10.1111/jar.12150
Dewinter, J., Onaiwu, M. G., Massolo, M. L., Caplan, R., Van Beneden, E., Brörmann, N., . . . , & van der Miesen, A. I. (2013). Autism and Normative Sexual Development: A Narrative Review. Journal of Clinical Nursing, 22(23-24), 3467-3483. doi: 10.1111/jocn.12397
Elder, J. H., Kreider, C. M., Brasher, S. N., & Ansell, M. (2017). Clinical impact of early diagnosis of autism on the prognosis and parent–child relationships. Psychology Research and Behavior Management, 10, 283-292. doi: 10.2147/PRBM.S117499
Fortuna, R. J., Robinson, L., Smith, T. H., Meccarello, J., Bullen, B., Nobis, K., & Davidson, P. W. (2016). Health conditions and functional status in adults with autism: A cross-sectional evaluation. Journal of General Internal Medicine, 31, 77-84.
Hodgetts, S., Nicholas, D., & Zwaigenbaum, L. (2013). Home Sweet Home? Families’ Experiences with Aggression in Children with Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 28(3), 166-174. doi: 10.1177/1088357612472932.
Hodgetts, S., Zwaigenbaum, L., & Nicholas, D. (2015). Profile and predictors of service needs for families of children with autism spectrum disorders. Autism, 19(6), 673-683. doi: 10.1177/1362361314543531
Hong, J., DaWalt, L. S., Taylor, J. L., Haider, A., & Mailick, M. (2013). Autism through midlife: trajectories of symptoms, behavioral functioning, and health. Journal of Neurodevelopmental Disorders, 15, 36. doi: 10.1186/s11689-023-09505-w
Lee, C. E., Burke, M. M., DaWalt, L. S., Li, C., & Taylor, J. L. (2022). The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum. Autism, 26(4), 1001-1006. doi: 10.1177/13623613211057660.
Malerba, V. B. (2020). Sexualidade no transtorno do espectro autista: perspectivas do adolescente, de sua mãe e de seu pai [Dissertação de Mestrado, Universidade de São Paulo].
Mann, L. E., Travers, J. C. (2020). A Systematic Review of Interventions to Address Inappropriate Masturbation for Individuals with Autism Spectrum Disorder or Other Developmental Disabilities. Review Journal Autism Developmental Disorders, 7, 205-218. doi: 10.1007/s40489-019-00192-9
Manor-Binyamini, I., Schreiber-Divon, M. (2019). Parental Perceptions of the Sexuality of Adolescents with Intellectual Disabilities. Sexuality and Disability, 37(34), 599-612. doi: 10.1007/s11195-019-09586-3
Marsack, C. N., & Perry, T. E. (2018). Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder. Research on Aging, 40(6), 535-557. doi: 10.1177/0164027517717044
Marsack-Topolewski, C. N., & Graves, J. M. (2019). “I worry about his future!” Challenges to future planning for adult children with ASD. Journal of Family Social Work, 23(1), 71-85. doi: 10.1080/10522158.2019.1578714
Nichols, S., & Blakeley-Smith, A. (2009). “I’m Not Sure We’re Ready for This…”: Working With Families Toward Facilitating Healthy Sexuality for Individuals With Autism Spectrum Disorders. Social Work in Mental Health, 8(1), 72-91. doi: 10.1080/15332980902932383
Parsi, K., & Elster, N. (2012). Growing up with autism: Challenges and opportunities of parenting young adult children with autism spectrum disorders. Narrative Inquiry in Bioethics, 2(3), 207-211. doi: 10.1353/nib.2012.0058
Pinto, A. S., & Constantinidis, T. C. (2020). Revisão Integrativa sobre a Vivência de Mães de Crianças com Transtorno de Espectro Autista. Revista Psicologia e Saúde, 12(2), 89-103. doi: 10.20435/pssa.v0i0.799
Postorino, V., Siracusano, M., Giovagnoli, G., Mazzone, L. (2018). Aspects of Sexuality During Development in Autism Spectrum Disorder. In E. Jannini, & A. Siracusano. (Eds.), Sexual Dysfunctions in Mentally Ill Patients. Trends in Andrology and Sexual Medicine (pp. 63-73). Cham: Springer. doi: 10.1007/978-3-319-68306-5_6
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. doi: 10.1007/s11920-012-0328-1
Sosnowy, C., Silverman, C. & Shattuck, P. 2018. Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism: The International Journal of Research and Practice, 22, 29-39.
Woodman, A. C., Smith, L. E., Greenberg, J. S., Mailick, M. R. (2015). Change in autism symptoms and maladaptive behaviors in adolescence and adulthood: the role of positive family processes. Journal of Autism and Developmental Disorders, 45(1), 111-126. doi: 10.1007/s10803-014-2199-2
World Health Organization. (2021). International statistical classification of diseases and related health problems (11a Ed.). https://icd.who.int/
Zanon, R. B., Backes, B., & Bosa, C. A. (2014). Identificação dos primeiros sintomas do autismo pelos pais. Psicologia: Teoria e Pesquisa, 30, 25-33. doi: 10.1590/S0102-37722014000100004
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Psicologia USP
This work is licensed under a Creative Commons Attribution 4.0 International License.
Todo o conteúdo de Psicologia USP está licenciado sob uma Licença Creative Commons BY-NC, exceto onde identificado diferentemente.
A aprovação dos textos para publicação implica a cessão imediata e sem ônus dos direitos de publicação para a revista Psicologia USP, que terá a exclusividade de publicá-los primeiramente.
A revista incentiva autores a divulgarem os pdfs com a versão final de seus artigos em seus sites pessoais e institucionais, desde que estes sejam sem fins lucrativos e/ou comerciais, mencionando a publicação original em Psicologia USP.
