HOW DO PARENTS OF AUTISTIC ADULTS IN THE ARAB SECTOR IN ISRAEL PERCEIVE THEIR ROLE IN SUPPORTING THEIR CHILDREN DURING THEIR ADULTHOOD LIFE AFTER SCHOOL?

Rawd Brejieh

Abstract


This research explores how parents of autistic adults living in the Arab sector in Israel understand and enact their roles of caregiving during the transition to adulthood after school. The research was undertaken due to the increasing need to understand the lived experiences of parents caring for an autistic adult child, where support during the transition to adulthood is often not present at all, and especially to families living in under-resourced and culturally different communities. As a new addition to the literature, the research contributes by illustrating the cultural, emotional, and structural complexities influencing parental support for their autistic children living in Arab communities. Thematic analysis was used as part of a qualitative, phenomenological methodology, which included data collected from semi-structured interviews and focus groups conducted with 40 Arab parents. The findings demonstrated that parents provided emotional, financial, and practical holistic support to their autistic adult child, but were also confronted by systemic negligence, cultural stigma, and economic struggle. In conclusion, the care being offered by parents is dependent on their family resources, with few professional services available, and often, the services available are not culturally appropriate. Links were made in the recommendations for research and practice about establishing and developing systems to provide culturally appropriate, accessible community-based supports and transition programs, for autistic adults living in the Arab sector of Israel. In theoretical terms, the research adds to the understanding of caregiving in minority communities; in practical terms, the research shows an urgent need to create and enact inclusive policies that integrate family voices into the autism care structure.

 

Article visualizations:

Hit counter


Keywords


Autism Spectrum Disorder (ASD); Arab parents; autistic adults; caregiving; transition to adulthood; Arab sector in Israel; cultural stigma; family support; parental perceptions; services

Full Text:

PDF

References


AboJabel, H., & Abo-Rass, F. (2025). Attitudes of Arab family caregivers in Israel toward robot-delivered care for ADL-dependent (activities of daily living-dependent) older people: Identifying ethical and social issues. Bioethical Inquiry, 22, 415–430. https://doi.org/10.1007/s11673-024-10414-3

Adler, K., Salanterä, S., & Zumstein-Shaha, M. (2019). Focus group interviews in child, youth, and parent research: An integrative literature review. International Journal of Qualitative Methods, 18, 1–15. https://doi.org/10.1177/1609406919887274

Alkhateeb, J.M., Hadidi, M.S. & Mounzer, W. (2022). The Impact of Autism Spectrum Disorder on Parents in Arab Countries: A Systematic Literature Review. Front. Psychol, 13 (955442). https://doi.org/10.3389/fpsyg.2022.955442

Alkhatib, R. N., Dukmak, S. J., El-Dahiyat, F., & Abojadi, A. A. (2024). Developing the first Arabic quality of life for parents of children with autism (QoLA) scale: Translation, cultural adaptation and psychometric validation. Middle East Current Psychiatry, 31(33). https://doi.org/10.1186/s43045-024-00344-7

Alhazmi, A.A. & Kaufmann, A. (2022). Phenomenological Qualitative Methods Applied to the Analysis of Cross-Cultural Experience in Novel Educational Social Contexts. Front Psychol,13. https://doi.org/10.3389/fpsyg.2022.785134

Al-Mamri, W., Idris, B., Dakak, S., Al-Saidi, A., Al-Shibani, T., Al-Harthi, I., Al-Mamari, W., & Al-Adawi, S. (2019). Revisiting the prevalence of autism spectrum disorder among Omani children: A multicentre study. Sultan Qaboos University Medical Journal, 19(4), e305–e309. https://doi.org/10.18295/squmj.2019.19.04.005

Al-Oran, M. & Khuan, L. (2021). Predictors of parenting stress in parents of children diagnosed with autism spectrum disorder: A scoping review. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery, 57(1). https://doi.org/10.1186/s41983-021-00345-w

ALUT – The Israeli Society for Children and Adults with Autism. (2023). Autism in Israel – Status Report 2021–2022. Tel Aviv: ALUT. Retrieved from https://www.alut.org.il [ in Hebrew]

American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596

Andrade, C. (2021). The inconvenient truth about convenience and purposive samples. Indian journal of psychological medicine, 43(1), 86-88. https://doi.org/10.1177/0253717620977000

Azzam, M., & Joseph, R. A. (2021). Parenting a child with autism spectrum disorder: perspective of Jordanian mothers. J. Transcult. Nurs, 32, 474–483. https://doi.org/10.1177/1043659620970634

Beenstock, M., Pinto, O., & Rimmerman, A. (2021). Transition Into Adulthood with Autism Spectrum Disorders: A Longitudinal Population Cohort Study of Socioeconomic Outcomes. Journal of Disability Policy Studies, 32(3), 159-170. https://doi.org/10.1177/1044207320943590

Blaxill, M., Rogers, T., & Nevison, C. (2022). Autism tsunami: the impact of rising prevalence on the societal cost of autism in the United States. J. Autism Dev. Disord, 52, 2627–2643. https://doi.org/10.1007/s10803-021-05120-7

Biklen, D. (2005). Autism and the myth of the person alone. New York University Press. Bouzioti, D. (2023). Introducing the phenomenological model of performance practice (PMPP): Phenomenological research design and the lived experience in performance. International Journal of Qualitative Methods, 22. https://doi.org/10.1177/16094069231211142

Bryman, A. (2017). Social Research Methods (4th ed). Oxford: Oxford University Press. Retrieved from https://ktpu.kpi.ua/wp-content/uploads/2014/02/social-research-methods-alan-bryman.pdf

Busetto, L., Wick, W., & Gumbinger, C. (2020). How to use and assess qualitative research methods. Neurological Research and Practice, 2, Article 14. https://doi.org/10.1186/s42466-020-00059-z

Centers for Disease Control and Prevention. (2021). Data and statistics on autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/data.html

Central Bureau of Statistics. (2023). Statistical Yearbook for Israel 2023. Israel: Central Bureau of Statistics. Retrieved October 15, 2023, from https://www.cbs.gov.il/he/publications/Pages/2023

Chau, W. & Furness, P. (2023). Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study. American Journal of Qualitative Research, 7 (1) 168-190. Retrieved from https://www.ajqr.org/download/happiness-in-parents-of-children-with-autism-spectrum-disorder-a-qualitative-study-12950.pdf

Chun, J., Kuo, H. J., Curtiss, S. L., Lee, G. K., Lee, H., & Awadu, J. (2022). The interplay of supports and barriers during the transition to adulthood for youth on the autism spectrum. Disability and Rehabilitation. https://doi.org/10.1080/09638288.2022.2112097

Crane, L., Davies, J., Fritz, A., O’Brien, S., Worsley, A., Ashworth, M., & Remington, A. (2021). The transition to adulthood for autistic young people with additional learning needs: The views and experiences of education professionals in special schools. British Journal of Special Education, 48(4), 509–529. https://doi.org/10.1111/1467-8578.12372

Creswell, J., Poth, C. (2018). Qualitative inquiry and research design: Choosing among five approaches (4th ed). Sage. Retrieved from https://collegepublishing.sagepub.com/products/qualitative-inquiry-and-research-design-4-246896

Davey, L. (2020). Using the special interests of autistic children to facilitate meaningful engagement and learning. Good Autism. Practice, 21(1), 43–64. https://www.bild.org.uk/wp-content/uploads/2020/01/Davey-GAP-May-2020.pdf

Davidovitch, M., Slobodin, O., Weisskopf, M. G., & Rotem, R. S. (2020). Age-specific time trends in incidence rates of autism spectrum disorder following adaptation of DSM-5 and other ASD related regulatory changes in Israel. Autism Research, 13(11), 1893–1901. https://doi.org/10.1002/aur.2420

de Leeuw, A., Happé, F., & Hoekstra, R. A. (2020). A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Research, 13(7), 1029– 1050. https://doi.org/10.1002/aur.2276

Dellapiazza, F., Audras-Torrent, L., Michelon, C., & Baghdadli, A. (2021). Clinical characteristics of children with ASD and comorbid ADHD: Association with social impairment and externalizing and internalizing behaviours. Research in Developmental Disabilities, 113, 103930–103930. https://doi.org/10.1016/j.ridd.2021.103930

Ebrahimi, M. S., Amiri, Z., Shobeiri, P., Khazaei, S., Rabiee, N., Gholamaliee, B., & Moradi, Y. (2023). Burden of autism spectrum disorders in North Africa and the Middle East from 1990 to 2019: A systematic analysis for the Global Burden of Disease Study 2019. Brain and Behavior, 13(7). https://doi.org/10.1002/brb3.3067

Ferman, S., & Segal, O. (2024). The face of autism in Israel. Neuropsychiatric Disease and Treatment, 20, 1677–1692. https://doi.org/10.2147/NDT.S437518

Finlay, L. (2021). Thematic analysis: The ‘Good’, the ‘Bad’ and the ‘Ugly’. European Journal Qualitative Research in Psychotherapy, 11, 103-116

Flick, U. (2018). The Concepts of Qualitative Data: Challenges in Neoliberal Times for Qualitative Inquiry. Qualitative Inquiry, 25(8), 713-720. https://doi.org/10.1177/1077800418809132

Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism Developmental Disorders, 7(1), 306–317. https://doi.org/10.1007/s40489-020-00197-9

Huang, A. X., Hughes, T. L., Sutton, L. R., Lawrence, M., Chen, X., Ji, Z., & Zeleke, W. (2017). Understanding the self in individuals with Autism Spectrum Disorders (ASD): A review of literature. Frontiers in Psychology, 8, 1422–1422. https://doi.org/10.3389/fpsyg.2017.01422

Hossain, MS., Alam, K. & Ali, S. (2024). Phenomenological Approach in the Qualitative Study: Data Collection and Saturation. ICRRD Journal, 5(2), 147-172. https://doi.org/10.53272/icrrd.v5i2.4

Ilias, K., Cornish, K., Kummar, A. S., Park, M. S., and Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder (ASD) in Southeast Asia: a systematic review. Front. Psychol. 9, 280. https://doi.org/10.3389/fpsyg.2018.00280

Jaisle, E.M., Groves, N.B., Black, K.E. & Kofler, M.J. (2023). Linking ADHD and ASD Symptomatology with Social Impairment: The Role of Emotion Dysregulation. Res Child Adolesc Psychopathol. 51(1),3-16. https://doi.org/10.1007/s10802-022-00982-6

Knott, E., Rao, A.H., Summers, K. & Teeger, C. (2022). Interviews in the social sciences. Nat Rev Methods Primers, 2 (73). https://doi.org/10.1038/s43586-022-00150-6

Loomes, R., Hull, L., & Mandy, W. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013

Memon, M. A., Thurasamy, R., Ting, H., & Cheah, J.-H. (2025). Purposive sampling: A review and guidelines for quantitative research. Journal of Applied Structural Equation Modeling, 9(1), 01–23. https://doi.org/10.47263/JASEM.9(1)01

Naeem, M., Ozuem, W., Howell, K., & Ranfagni, S. (2023). A Step-by-Step Process of Thematic Analysis to Develop a Conceptual Model in Qualitative Research. International Journal of Qualitative Methods, 22. https://doi.org/10.1177/16094069231205789

Nuske, H. J., McGhee Hassrick, E., Bronstein, B., Hauptman, L., Aponte, C., Levato, L., Stahmer, A., Mandell, D. S., Mundy, P., Kasari, C., et al. (2019). Broken bridges—New school transitions for students with autism spectrum disorder: A systematic review on difficulties and strategies for success. Autism, 23(2), 306–325. https://doi.org/10.1177/1362361317737922

Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: a qualitative study. Brain Sci. 11, 309. https://doi.org/10.3390/brainsci11030309

Paraskevi, G. (2021). The inclusion of children with autism in the mainstream school classroom: Knowledge and perceptions of teachers and special education teachers. Open Access Library Journal, 8. https://doi.org/10.4236/oalib.1107855

Qoronflesh, M. W., Essa, M. M., Alharahsheh, S. T., Al-Farsi, Y. M., & Al-Adawi, S. (2019). Autism in the Gulf states: A regional overview. Frontiers in Bioscience, 24(2), 334–346. https://doi.org/10.2741/4721

Richter, M., Flavier, E., Popa-Roch, M., & Clément, C. (2020). Perceptions on the primary-secondary school transition from French students with autism spectrum disorder and their parents. European Journal of Special Needs Education, 35(2), 171–187. https://doi.org/10.1080/08856257.2019.1581401

Ross-Lévesque, É., Martin-Roy, S., Julien-Gauthier, F., Jacob, S., Grandisson, M., St-Pierre, M.-C., Dahan-Oliel, N., Lamontagne, M.-È., & Desmarais, C. (2024). Transition to adulthood of youth with disabilities: Mapping declared practices to recommended practices. British Journal of Special Education. Advance online publication. https://doi.org/10.1111/1471-3802.12652

Salari, N., Rasoulpoor, S., Rasoulpoor, S., Shohaimi, S., Hosseinian-Far, A., Khaledi-Paveh, B., & Mohammadi, M. (2022). The global prevalence of autism spectrum disorder: A comprehensive systematic review and meta-analysis. Italian Journal of Pediatrics, 48(1), 112. https://doi.org/10.1186/s13052-022-01310-w

Saleh, A. (2024). Autism, adolescence, and sexual health education in the Arab world: Safeguarding through behaviour analysis (Doctoral dissertation). Queen’s University Belfast. Retrieved from https://pure.qub.ac.uk/en/studentTheses/autism-adolescence-and-sexual-health-education-in-the-arab-world/

Samuel, P. S., Marsack-Topolewski, C. N., & Chan, K. T. (2025). Quality of life of family caregivers of adults with autism: Role of caregiver burden, health, and social support of compound and noncompound caregivers. Families in Society: The Journal of Contemporary Social Services, 1–20. https://doi.org/10.1177/10443894241306145

Shattnawi, K., Bani, W., Al-Natour, S., Al-Hammouri, M., Al-Azzam, M. & Joseph, R. (2020). Parenting a Child with Autism Spectrum Disorder: Perspective of Jordanian Mothers. Journal of Transcultural Nursing. https://doi.org/10.1177/1043659620970634

Scheef, A. & Mahfouz, J. (2020). Supporting the post-school goals of youth with disabilities through the use of a transition coordinator. Research in Educational Administration and Leadership, 5(1), 43–69. https://files.eric.ed.gov/fulltext/EJ1253134.pdf

Schneider, B., Klager, C., Chen, I.-C., & Burns, J. (2016). Transitioning into adulthood: Striking a balance between support and independence. Policy Insights from the Behavioral and Brain Sciences, 3(1), 1–8. https://doi.org/10.1177/2372732215624932

Solmi, M., Song, M., Yon, D. K., Koyanagi, A., Smith, L., Kim, J., Fusar-Poli, P., & Jacob, L. (2022). Incidence, prevalence, and global burden of autism spectrum disorder from 1990 to 2019 across 204 countries. Molecular Psychiatry, 27(10), 4172–4180. https://doi.org/10.1038/s41380-022-01630-7

Sun, I. Y., Cortez, A. C. M., & Fernandes, F. D. M. (2019). Learning disabilities in children with autism. In S. Misciagna (Ed.), Learning disabilities: Neurological bases, clinical features and strategies of intervention. IntechOpen., 8923, 12-21. https://doi.org/10.5772/intechopen.89234

Sundler S. J., Lindberg E., Nilsson C., Palmér L. (2019). Qualitative thematic analysis based on Descriptive Phenomenology (pp. 733–739). Wiley Nursing Open. https://doi.org/10.1002/nop2.275

Talantseva, O. I., Romanova, R. S., Shurdova, E. M., Idrisov, B. M., & Muhamedrahimov, R. J. (2023). The global prevalence of autism spectrum disorder: A three-level meta-analysis. Frontiers in Psychiatry, 14, 1071181. https://doi.org/10.3389/fpsyt.2023.1071181

Tavakol, M., & Sandars, J. (2025). Twelve tips for using phenomenology as a qualitative research approach in health professions education. Medical Teacher. https://doi.org/10.1080/0142159X.2025.2478871

Towle, P. O., Vacanti-Shova, K., Shah, S., & Higgins-D’alessandro, A. (2013). School-aged functioning of children diagnosed with autism spectrum disorder before age three: Parent-reported diagnostic, adaptive, medication, and school placement outcomes. Journal of Autism and Developmental Disorders, 44(6), 1357–1372. https://doi.org/10.1007/s10803-013-1997-2

Wang, X., Cui, Y., Wang, M., & Fan, X. (2025). Experiences of Social Support among Foreign Parents Raising Children with Autism Spectrum Disorder in China: A Cross-Cultural Study. International Journal of Disability, Development and Education, 1–20. https://doi.org/10.1080/1034912X.2025.2500325

Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., & Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5), 778–790. https://doi.org/10.1002/aur.2696




DOI: http://dx.doi.org/10.46827/ejsss.v11i5.2083

Copyright (c) 2025 Rawd Brejieh

Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.

The research works published in this journal are free to be accessed. They can be shared (copied and redistributed in any medium or format) and\or adapted (remixed, transformed, and built upon the material for any purpose, commercially and\or not commercially) under the following terms: attribution (appropriate credit must be given indicating original authors, research work name and publication name mentioning if changes were made) and without adding additional restrictions (without restricting others from doing anything the actual license permits). Authors retain the full copyright of their published research works and cannot revoke these freedoms as long as the license terms are followed.

Copyright © 2016 - 2026. European Journal Of Social Sciences Studies (ISSN 2501-8590) is a registered trademark of Open Access Publishing Group. All rights reserved.

This journal is a serial publication uniquely identified by an International Standard Serial Number (ISSN) serial number certificate issued by Romanian National Library. All the research works are uniquely identified by a CrossRef DOI digital object identifier supplied by indexing and repository platforms. All the research works published on this journal are meeting the Open Access Publishing requirements and standards formulated by Budapest Open Access Initiative (2002), the Bethesda Statement on Open Access Publishing (2003) and  Berlin Declaration on Open Access to Knowledge in the Sciences and Humanities (2003) and can be freely accessed, shared, modified, distributed and used in educational, commercial and non-commercial purposes under a Creative Commons Attribution 4.0 International License. Copyrights of the published research works are retained by authors.