Current Status of Health and Social Services for Children with Autism in Iran: Parents’ Perspectives
-
Hadi Zarafshan
,
Mohammad Reza Mohammadi
,
Farid Abolhassani
,
Seyed Abbas Motevalian
,
Neda Sepasi
,
Vandad Sharifi
Abstract
Objective: The present study is a part of a larger study that aimed at developing a comprehensive model of service delivery for individuals with autism in Iran based on the local needs and characteristics. In this study, the status of the services provided to those with autism in Iran was investigated based on the perspectives of parents of children with autism.
Method: A semi-structured interview was used to qualitatively investigate the status of the services with regards to autism in Iran based on the perspectives of parents of children with autism.
Results: This study revealed several barriers, including shortness of eligible professionals, difficulty in access to care for families, high costs, and lack of formal and informal supports, in providing services to those with autism in Iran. Early detection and diagnosis are of prime importance. We also need to train our specialists to diagnose autism based on the standard protocols and tests.
Conclusion: In sum, we need a comprehensive program that involves different sectors in charge of health and education in Iran.
1. Association AP. Diagnostic and statistical manual of mental disorders (DSM-5®). City: American Psychiatric Pub; 2013.
2. Billstedt E, Gillberg C, Gillberg C. Autism after adolescence: population-based 13-to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. J Autism Dev Disord. 2005;35(3):351-60.
3. Seltzer MM, Krauss MW, Shattuck PT, Orsmond G, Swe A, Lord C. The symptoms of autism spectrum disorders in adolescence and adulthood. J Autism Dev Disord. 2003;33(6): 565-81.
4. Thomas KC, Ellis AR, McLaurin C, Daniels J, Morrissey JP. Access to care for autism-related services. J Autism Dev Disord. 2007; 37(10): 1902-12.
5. Müller E, Schuler A, Burton BA, Yates GB. Meeting the vocational support needs of individuals with Asperger syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation. 2003;18(3):163-175.
6. Chiri G, Warfield ME. Unmet need and problems accessing core health care services for children with autism spectrum disorder. Matern Child Health J 2012;16(5):1081-91.
7. Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcín C, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012;5(3):160-79.
8. Williams JG, Higgins JP, Brayne CE. Systematic review of prevalence studies of autism spectrum disorders. Arch Dis Child. 2006;91(1):8-15.
9. Sun X, Allison C, Auyeung B, Matthews FE, Murray S, Baron-Cohen S, et al. Service provision for autism in mainland China: A service providers’ perspective. Research in Developmental Disabilities. 2013;34(1):440-451.
10. Brooks R, Marshallsay M, Fraser W. Autism spectrum disorder: how to help children and families. Current Paediatrics. 2004;14(3):208-13.
11. Cummings JR, Lynch FL, Rust KC, Coleman KJ, Madden JM, Owen-Smith AA, et al. Health Services Utilization Among Children With and Without Autism Spectrum Disorders. J Autism Dev Disord. 2016;46(3):910-20.
12. Hess KL, Morrier MJ, Heflin LJ, Ivey ML. Autism treatment survey: Services received by children with autism spectrum disorders in public school classrooms. J Autism Dev Disord. 2008;38(5): 961-71.
13. Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007;161(4):343-9.
14. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA pediatrics. 2014;168(8):721-8.
15. Samadi SA, Mahmoodizadeh A, McConkey R. A national study of the prevalence of autism among five-year-old children in Iran. Autism. 2012;16(1):5-14.
16. Zarafshan H, Mohammadi MR, Motevalian SA, Abolhassani F, Khaleghi A , Sharifi V. Autism Research in Iran: A Scientometric Study. Iranian Journal of Psychiatry and Behavioral Sciences. 2017;11(2).
17. Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ. 2000;320(7227):114-6.
18. Fernell E, Eriksson MA, Gillberg C. Early diagnosis of autism and impact on prognosis: a narrative review. Clin Epidemiol. 2013; 5(33.10): 33-43.
19. Daniels AM, Halladay AK, Shih A, Elder LM, Dawson G. Approaches to enhancing the early detection of autism spectrum disorders: a systematic review of the literature. J Am Acad Child Adolesc Psychiatry. 2014;53(2):141-52.
20. Banach M, Iudice J, Conway L, Couse LJ. Family support and empowerment: Post autism diagnosis support group for parents. Social Work with Groups. 2010;33(1):69-83.
21. Samadi SA, McConkey R, Kelly G. The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Dev Care. 2012;182(11): 1439-53.
22. Ahmadi A, Zalani HA, Amrai K. The needs of Iranian families of children with autism spectrum disorder, cross-cultural study. Procedia-Social and Behavioral Sciences. 2011;15: 321-6.
23. Young A, Ruble L, McGrew J. Public vs. private insurance: Cost, use, accessibility, and outcomes of services for children with autism spectrum disorders. Research in Autism Spectrum Disorders. 2009; 3(4):102333.
24. Rispoli M, Neely L, Lang R, Ganz J. Training paraprofessionals to implement interventions for people autism spectrum disorders: A systematic review. Dev Neurorehabil. 2011;14(6):378-88.
25. McConachie H, Diggle T. Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. J Eval Clin Pract. 2007;13(1):120-9.
26. Harper A, Dyches TT, Harper J, Roper SO, South M. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2013; 43(11): 2604-16.
27. Smith T, Perry A. A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities. 2005; 11(1):77-88.
28. Glasberg BA. The Development of Siblings' Understanding of Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 2000;30:143-56.
29. Van Bourgondien ME, Schopler E. Critical issues in the residential care of people with autism. Journal of Autism and Developmental Disorders. 1990;20:391-9.
30. Samadi SA, McConkey R. Autism in developing countries: Lessons from Iran. Autism Res Treat 2011;2011:145359.
31. Ferraioli SJ, Harris SL. Effective Educational Inclusion of Students on the Autism Spectrum. Journal of Contemporary Psychotherapy. 2011; 41(1): 19-28.
32. Rotheram-Fuller EJ. Age-related changes in the social inclusion of children with autism in general education classrooms. Unpublished thesis, University of California 2005.
33. Levy A, Perry A. Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders. 2011; 5(4):1271-82.
34. Persson B. Brief report: A longitudinal study of quality of life and independence among adult men with autism. J Autism Dev Disord. 2000;30(1):61-6.
2. Billstedt E, Gillberg C, Gillberg C. Autism after adolescence: population-based 13-to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. J Autism Dev Disord. 2005;35(3):351-60.
3. Seltzer MM, Krauss MW, Shattuck PT, Orsmond G, Swe A, Lord C. The symptoms of autism spectrum disorders in adolescence and adulthood. J Autism Dev Disord. 2003;33(6): 565-81.
4. Thomas KC, Ellis AR, McLaurin C, Daniels J, Morrissey JP. Access to care for autism-related services. J Autism Dev Disord. 2007; 37(10): 1902-12.
5. Müller E, Schuler A, Burton BA, Yates GB. Meeting the vocational support needs of individuals with Asperger syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation. 2003;18(3):163-175.
6. Chiri G, Warfield ME. Unmet need and problems accessing core health care services for children with autism spectrum disorder. Matern Child Health J 2012;16(5):1081-91.
7. Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcín C, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012;5(3):160-79.
8. Williams JG, Higgins JP, Brayne CE. Systematic review of prevalence studies of autism spectrum disorders. Arch Dis Child. 2006;91(1):8-15.
9. Sun X, Allison C, Auyeung B, Matthews FE, Murray S, Baron-Cohen S, et al. Service provision for autism in mainland China: A service providers’ perspective. Research in Developmental Disabilities. 2013;34(1):440-451.
10. Brooks R, Marshallsay M, Fraser W. Autism spectrum disorder: how to help children and families. Current Paediatrics. 2004;14(3):208-13.
11. Cummings JR, Lynch FL, Rust KC, Coleman KJ, Madden JM, Owen-Smith AA, et al. Health Services Utilization Among Children With and Without Autism Spectrum Disorders. J Autism Dev Disord. 2016;46(3):910-20.
12. Hess KL, Morrier MJ, Heflin LJ, Ivey ML. Autism treatment survey: Services received by children with autism spectrum disorders in public school classrooms. J Autism Dev Disord. 2008;38(5): 961-71.
13. Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007;161(4):343-9.
14. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA pediatrics. 2014;168(8):721-8.
15. Samadi SA, Mahmoodizadeh A, McConkey R. A national study of the prevalence of autism among five-year-old children in Iran. Autism. 2012;16(1):5-14.
16. Zarafshan H, Mohammadi MR, Motevalian SA, Abolhassani F, Khaleghi A , Sharifi V. Autism Research in Iran: A Scientometric Study. Iranian Journal of Psychiatry and Behavioral Sciences. 2017;11(2).
17. Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ. 2000;320(7227):114-6.
18. Fernell E, Eriksson MA, Gillberg C. Early diagnosis of autism and impact on prognosis: a narrative review. Clin Epidemiol. 2013; 5(33.10): 33-43.
19. Daniels AM, Halladay AK, Shih A, Elder LM, Dawson G. Approaches to enhancing the early detection of autism spectrum disorders: a systematic review of the literature. J Am Acad Child Adolesc Psychiatry. 2014;53(2):141-52.
20. Banach M, Iudice J, Conway L, Couse LJ. Family support and empowerment: Post autism diagnosis support group for parents. Social Work with Groups. 2010;33(1):69-83.
21. Samadi SA, McConkey R, Kelly G. The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Dev Care. 2012;182(11): 1439-53.
22. Ahmadi A, Zalani HA, Amrai K. The needs of Iranian families of children with autism spectrum disorder, cross-cultural study. Procedia-Social and Behavioral Sciences. 2011;15: 321-6.
23. Young A, Ruble L, McGrew J. Public vs. private insurance: Cost, use, accessibility, and outcomes of services for children with autism spectrum disorders. Research in Autism Spectrum Disorders. 2009; 3(4):102333.
24. Rispoli M, Neely L, Lang R, Ganz J. Training paraprofessionals to implement interventions for people autism spectrum disorders: A systematic review. Dev Neurorehabil. 2011;14(6):378-88.
25. McConachie H, Diggle T. Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. J Eval Clin Pract. 2007;13(1):120-9.
26. Harper A, Dyches TT, Harper J, Roper SO, South M. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2013; 43(11): 2604-16.
27. Smith T, Perry A. A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities. 2005; 11(1):77-88.
28. Glasberg BA. The Development of Siblings' Understanding of Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 2000;30:143-56.
29. Van Bourgondien ME, Schopler E. Critical issues in the residential care of people with autism. Journal of Autism and Developmental Disorders. 1990;20:391-9.
30. Samadi SA, McConkey R. Autism in developing countries: Lessons from Iran. Autism Res Treat 2011;2011:145359.
31. Ferraioli SJ, Harris SL. Effective Educational Inclusion of Students on the Autism Spectrum. Journal of Contemporary Psychotherapy. 2011; 41(1): 19-28.
32. Rotheram-Fuller EJ. Age-related changes in the social inclusion of children with autism in general education classrooms. Unpublished thesis, University of California 2005.
33. Levy A, Perry A. Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders. 2011; 5(4):1271-82.
34. Persson B. Brief report: A longitudinal study of quality of life and independence among adult men with autism. J Autism Dev Disord. 2000;30(1):61-6.
| Files | ||
| Issue | Vol 14 No 1 (2019) | |
| Section | Original Article(s) | |
| DOI | https://doi.org/10.18502/ijps.v14i1.427 | |
| Keywords | ||
| Iran parent services Qualitative Study Autism | ||
| Rights and permissions | |
|
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. |
How to Cite
1.
Zarafshan H, Mohammadi MR, Abolhassani F, Motevalian SA, Sepasi N, Sharifi V. Current Status of Health and Social Services for Children with Autism in Iran: Parents’ Perspectives. Iran J Psychiatry. 2018;14(1):76-83.
