Challenges Facing Parents and Specialists in Diagnosing Children with Autism Spectrum Disorder in the Tabuk Region
Keywords:
Challenges; Diagnosis; Autism Spectrum Disorder
Abstract
The current study attempted to understand the experiences of parents and specialists about the diagnostic challenges of children with autism spectrum disorder. The study sample consisted of (9) parents and specialists in the process of diagnosing autism spectrum disorder. The study used a qualitative approach by conducting semi-structured in-depth interviews with the participants. The results of the study found that there were eight challenges indicated by the participants’ experiences, and these challenges appeared in the areas of the diagnostic process, specialists, diagnostic tools, overlapping symptoms of autism spectrum disorder and other conditions, heterogeneity of symptoms, time of diagnosis, and results of diagnostic reports. The study recommends the necessity of increasing the establishment of diagnostic clinics specialized in autism spectrum disorder in the Kingdom of Saudi Arabia, especially in the Tabuk region, as well as holding training workshops for specialists on managing diagnostic tools.
References
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6. Braiden, H., Bothwell, J., & Duffy, J. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16(4),377-389 https://doi.org/10.1080/13575279.2010.498415
7. Brukner-Wertman, Y., Laor, N., & Golan, O. (2016). Social (pragmatic) communication disorder and its relation to the autism spectrum: dilemmas arising from the DSM-5 classification. Journal of Autism and Developmental Disordersm46,2821–2829. https://doi.org/10.1007/s10803-016-2814-5
8. Bryson, S., Rogers, S., & Fombonne, E. (2003). Autism spectrum disorders: Early detection and intervention, education and psychopharmacological treatment. Canadian Journal of Psychiatry,48, 506–516. http://dx.doi.org/10.4324/9781410611260
9. Carpenter L. (2013). DSM-5 autism spectrum disorder: guidelines criteria and exemplars. [Paper presentation]. AUCD Conference-Promoting inclusion. Retrieved from: https://depts.washington.edu/dbpeds/Screening%20Tools/DSM- 5(ASD.Guidelines)Feb2013.pdf
10. Dive, B & Edmonds, C. (2023). Experiences of Autism Diagnosis: Parental Experiences and Interpretations of the Process of Having a Child Diagnosed with Autism. Educational Psychology Research and Practice, Volume 9, Issue 1.
11. Dosreis, S., Weiner, C., Johnson,L, & Newschaffer, C. (2006). Autism spectrum disorder screening and management practices among general pediatric providers. Journal of developmental & behavioral pediatrics, 27(2),88-94. https://doi.org/10.1097/00004703-200604002-00006
12. Dwyer P. (2020). Issues with diagnostic assessments. Autistic Scholar. Thoughts On Autism, Neurodiversity, And More. Retrieved from: http://www.autisticscholar.com/issues-with-diagnostic-assessments/
13. Ennis-Cole, D., Durodoye, B., & Harris, H. (2013). The impact of culture on autism diagnosis and treatment: considerations for counselors and other professionals. The Family Journal,21(3),279–287. https://doi.org/10.1177%2F1066480713476834
14. Freedman, B., Kalb, L., Zablotsky, B., & Stuart, E. (2012). Relationship Status Among Parents of Children with Autism Spectrum Disorders: A Population- Based Study. Journal of Autism and Developmental Disorders,42(4),539-548. https://doi.org/10.1007/s10803-011-1269-y.
15. Frenette, P, Dodds, L., Pherson, K., Flowerdew, G., Hennen, B., & Bryson S. (2013). Factors affecting the age at diagnosis of autism spectrum disorders in Nova Scotia, Canada. Autism,17(2),184-195. https://doi.org/10.1177/1362361311413399
16. Gaitonde, S. (2008). A survey of parent satisfaction about services for children with pervasive developmental disorder. Unpublished dissertation. Oklahoma: Oklahoma State University.
17. Goin-Kochel R, Mackintosh VH, Myers BJ. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism. 2006; 10: 439-451.
18. Gray, L. A., Msall, E. R., & Msall, M. E. (2008). Communicating about autism: Decreasing fears and stresses through parent-professional partnerships. Infants & Young Children, 21, 256–271. http://dx.doi.org/10.1097/01.iyc.0000336539 .52627.e4
19. Heidi, C., Collins, MD., Matthew, S., and Seigl, MD. (2019). Recognizing and Treating Comorbid Psychiatric Disorders in People With Autism. Psychiatric Times. Retrieved from: https://www.psychiatrictimes.com/view/recognizing-and-treating-comorbid-psychiatric-disorders-people-autism
20. Howes, A. E., Burns, M. E., & Surtees, A. D. R. (2021). Barriers, facilitators, and experiences of the autism assessment process: A systematic review of qualitative research with health professionals. Professional Psychology: Research and Practice, 52(5), 449–460. https://doi.org/10.1037/pro0000413
21. Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism: International Journal of Research and Practice, 1,135-162. http://dx.doi.org/10.1177/1362361397012003.
22. http://dx.doi.org/10.1177/1088357612446860. Mandell, D., Ittenback, R., Levy, S., & Pinto-Martin, J. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1795–1802. https://doi.org/10.1007/s10803-006-0314-8
23. Hus, Y., & Segal, O. (2021). Challenges Surrounding the Diagnosis of Autism in Children. Neuropsychiatric Disease and Treatment, 17, 3509-3529. https://doi.org/10.2147/NDT.S282569
24. Hyassat M, Al-Makahleh A, Rahahleh Z, Al-Zyoud N. The Diagnostic Process for Children with Autism Spectrum Disorder: A Preliminary Study of Jordanian Parents' Perspectives. Children (Basel). 2023 Aug 15;10(8):1394. doi: 10.3390/children10081394. PMID: 37628393; PMCID: PMC10453648.
25. Hyman, S., Levy, S., & Myers, S. (2020). Identification, Evaluation, and Management of Children with Autism Spectrum Disorder. Pediatrics,145(1).https://doi.org/10.1542/peds.2019-3447
26. Lai, M., Lombardo, M., Auyeung, B., Chakrabarti, B., & Baron- Cohen, S. (2015). Sex/gender differences and autism: setting the scene for future research. Journal of the American Academy of Child & Adolescent Psychiatry.54(1),11–24. https://doi.org/10.1016/j.jaac.2014.10.003
27. Larsson, H., Eaton, W., Madsen, M., Vestergaard, M., Olesen, A., Agerbo, E., Schendel, D., Thorsen, P., & Mortensen, P. (2005). Risk factors for autism: perinatal factors, parental psychiatric history, and socioeconomic status. American Journal of Epidemiology,161(10),916–925. https://doi.org/10.1093/aje/kwi123
28. Lee, L., & Lwvey, S. (2015). Using standardized diagnostic instruments to classify children with autism in the Study to Explore Early Development. J Autism Dev Disord.,45(5):1271–1280. https://doi.org/10.1007/s10803-014-2287-3
29. Mesh S. (2009). Overcoming the Challenges of Assessing Young Children for Autism. Retrieved from: https://myut.ut.edu.sa/ut//init;jsessionid=4Y1vkdmdLiKcOHO8QxkrGJN5BZKwI_BvPRSruOpX5YaF4gzkfIJh!-1189740912
30. Mockett, M., Khan, J., & Theodosiou, L. (2011). Parent perceptions of a Manchester Service for autistic spectrum disorders. International Journal of Family Medicine,201. https://doi.org/10.1155/2011/601979
31. Perry, A., Condillac, R. M., & Freeman, N.L. (2002). Best practice and strategies for assessment and diagnosis of autism. Journal of Development Disability, 61-75.
32. Prizant, B. (2012). On the diagnosis and misdiagnosis of autism spectrum disorder. Autism Spectrum Disorder,53-60
33. Richler, J., Huerta, M., Bishop, S., & Lord, C. (2010). Developmental trajectories of restricted and repetitive behaviors and interests in children with autism spectrum disorders. Dev Psychopathol.22(1),55–69. https://doi.org/10.1017/s0954579409990265
34. Russel, G., Ford, T., Steer, C., & Golding, G. (2010). Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their services use. Journal of Child Psychology and Psychiatry, 51(6),463- 651. https://doi.org/10.1111/j.1469-7610.2010.02233.x
35. Rynkiewicz, A., Łucka, I. (2018). Autism spectrum disorder (ASD) in girls. Co-occurring psychopathology. Sex differences in clinical manifestation. Psychiatr Pol,52(4),629–639. https://doi.org/10.12740/pp/onlinefirst/58837
36. Saggu, R. (2015). Parental Perceptions of the Diagnostic Process for Autism Spectrum Disorder in British Columbia. [Unpublished doctoral dissertation]. Walden University.
37. Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family Experiences Through the Autism Diagnostic Process. Focus on Autism and Other Developmental Disabilities, 27(2), 81-92. https://doi.org/10.1177/1088357612446860
38. Siegel, B. (1996). The world of the autistic child: Understanding and treating autism spectrum disorders. New York, NY: Oxford University Press.
39. Stozler, S. (2011). Parental Perceptions of the Diagnosis Process of Their Young Child with Special Needs. [Unpublished Doctoral Dissertation], Loyola University Chicago.
40. Thabtah, F., Peebles, D. (2019). Early autism screening: a comprehensive review. Int J Environ Res Public Health,16(18),3502. https://doi.org/10.3390/ijerph16183502
41. Werner, E., Dawson, G., Munson, J., & Osterling, J. (2005). Variation in early developmental course in autism and its relation with behavioral outcome at 3- 4 years of age. Journal of Autism and Developmental Disorders, 35(3), 337– 350. http://dx.doi.org/10.1007/s10803-005-3301-6
42. Whiteley, P., Rodgers, J., & Shattock, P. (1998). Clinical features associated with autism: observations of symptoms outside the diagnostic boundaries of autism spectrum disorders. Autism, 2, 145-422. http://dx.doi.org/10.1007/s10803- 005-3301-6
43. Wiggins L., Reynolds, A., Rice C., Moody, E., Benal, P., Bkaskey, L., Resenberg, S.,
44. Zwaigenbaum, L., Bryson, S., & Garon, N. (2013). Early identification of autism spectrum disorders. Behavioral Brain Research,15(251),133-146. https://doi.org/10.1016/j.bbr.2013.04.004
2. حمدان، محمد والبلوي، فيصل (2018). مدخل إلى اضطراب طيف التوحد، النشأة والتطور-الأسباب- التشخيص والتدخل. (الطبعة الأولى). دار وائل للنشر، عمان-الأردن.
3. Accordino, E., Green, W., & Diaz, A. (2017). Autism spectrum disorder in lower socioeconomic communities: viewpoint. Annals Global Health,83(5–6):753–755. http://dx.doi.org/10.1016/j.aogh.2017.10.018
4. Bogdashina, O., (2005). Theory of Mind and the Triad of Perspectives on Autism and Asperger Syndrome: A view from the bridge, (1ed) Jessica Kingsley Publishers. London.
5. Boyd, B., Odom S., Humphreys, B., & Sam, M. (2010) Infants and Toddlers with Autism Spectrum Disorders: Early Identification and Early Intervention. Journal of Early Intervention,32(2)75-95. https://doi.org/10.1177%2F1053815110362690
6. Braiden, H., Bothwell, J., & Duffy, J. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16(4),377-389 https://doi.org/10.1080/13575279.2010.498415
7. Brukner-Wertman, Y., Laor, N., & Golan, O. (2016). Social (pragmatic) communication disorder and its relation to the autism spectrum: dilemmas arising from the DSM-5 classification. Journal of Autism and Developmental Disordersm46,2821–2829. https://doi.org/10.1007/s10803-016-2814-5
8. Bryson, S., Rogers, S., & Fombonne, E. (2003). Autism spectrum disorders: Early detection and intervention, education and psychopharmacological treatment. Canadian Journal of Psychiatry,48, 506–516. http://dx.doi.org/10.4324/9781410611260
9. Carpenter L. (2013). DSM-5 autism spectrum disorder: guidelines criteria and exemplars. [Paper presentation]. AUCD Conference-Promoting inclusion. Retrieved from: https://depts.washington.edu/dbpeds/Screening%20Tools/DSM- 5(ASD.Guidelines)Feb2013.pdf
10. Dive, B & Edmonds, C. (2023). Experiences of Autism Diagnosis: Parental Experiences and Interpretations of the Process of Having a Child Diagnosed with Autism. Educational Psychology Research and Practice, Volume 9, Issue 1.
11. Dosreis, S., Weiner, C., Johnson,L, & Newschaffer, C. (2006). Autism spectrum disorder screening and management practices among general pediatric providers. Journal of developmental & behavioral pediatrics, 27(2),88-94. https://doi.org/10.1097/00004703-200604002-00006
12. Dwyer P. (2020). Issues with diagnostic assessments. Autistic Scholar. Thoughts On Autism, Neurodiversity, And More. Retrieved from: http://www.autisticscholar.com/issues-with-diagnostic-assessments/
13. Ennis-Cole, D., Durodoye, B., & Harris, H. (2013). The impact of culture on autism diagnosis and treatment: considerations for counselors and other professionals. The Family Journal,21(3),279–287. https://doi.org/10.1177%2F1066480713476834
14. Freedman, B., Kalb, L., Zablotsky, B., & Stuart, E. (2012). Relationship Status Among Parents of Children with Autism Spectrum Disorders: A Population- Based Study. Journal of Autism and Developmental Disorders,42(4),539-548. https://doi.org/10.1007/s10803-011-1269-y.
15. Frenette, P, Dodds, L., Pherson, K., Flowerdew, G., Hennen, B., & Bryson S. (2013). Factors affecting the age at diagnosis of autism spectrum disorders in Nova Scotia, Canada. Autism,17(2),184-195. https://doi.org/10.1177/1362361311413399
16. Gaitonde, S. (2008). A survey of parent satisfaction about services for children with pervasive developmental disorder. Unpublished dissertation. Oklahoma: Oklahoma State University.
17. Goin-Kochel R, Mackintosh VH, Myers BJ. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism. 2006; 10: 439-451.
18. Gray, L. A., Msall, E. R., & Msall, M. E. (2008). Communicating about autism: Decreasing fears and stresses through parent-professional partnerships. Infants & Young Children, 21, 256–271. http://dx.doi.org/10.1097/01.iyc.0000336539 .52627.e4
19. Heidi, C., Collins, MD., Matthew, S., and Seigl, MD. (2019). Recognizing and Treating Comorbid Psychiatric Disorders in People With Autism. Psychiatric Times. Retrieved from: https://www.psychiatrictimes.com/view/recognizing-and-treating-comorbid-psychiatric-disorders-people-autism
20. Howes, A. E., Burns, M. E., & Surtees, A. D. R. (2021). Barriers, facilitators, and experiences of the autism assessment process: A systematic review of qualitative research with health professionals. Professional Psychology: Research and Practice, 52(5), 449–460. https://doi.org/10.1037/pro0000413
21. Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism: International Journal of Research and Practice, 1,135-162. http://dx.doi.org/10.1177/1362361397012003.
22. http://dx.doi.org/10.1177/1088357612446860. Mandell, D., Ittenback, R., Levy, S., & Pinto-Martin, J. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1795–1802. https://doi.org/10.1007/s10803-006-0314-8
23. Hus, Y., & Segal, O. (2021). Challenges Surrounding the Diagnosis of Autism in Children. Neuropsychiatric Disease and Treatment, 17, 3509-3529. https://doi.org/10.2147/NDT.S282569
24. Hyassat M, Al-Makahleh A, Rahahleh Z, Al-Zyoud N. The Diagnostic Process for Children with Autism Spectrum Disorder: A Preliminary Study of Jordanian Parents' Perspectives. Children (Basel). 2023 Aug 15;10(8):1394. doi: 10.3390/children10081394. PMID: 37628393; PMCID: PMC10453648.
25. Hyman, S., Levy, S., & Myers, S. (2020). Identification, Evaluation, and Management of Children with Autism Spectrum Disorder. Pediatrics,145(1).https://doi.org/10.1542/peds.2019-3447
26. Lai, M., Lombardo, M., Auyeung, B., Chakrabarti, B., & Baron- Cohen, S. (2015). Sex/gender differences and autism: setting the scene for future research. Journal of the American Academy of Child & Adolescent Psychiatry.54(1),11–24. https://doi.org/10.1016/j.jaac.2014.10.003
27. Larsson, H., Eaton, W., Madsen, M., Vestergaard, M., Olesen, A., Agerbo, E., Schendel, D., Thorsen, P., & Mortensen, P. (2005). Risk factors for autism: perinatal factors, parental psychiatric history, and socioeconomic status. American Journal of Epidemiology,161(10),916–925. https://doi.org/10.1093/aje/kwi123
28. Lee, L., & Lwvey, S. (2015). Using standardized diagnostic instruments to classify children with autism in the Study to Explore Early Development. J Autism Dev Disord.,45(5):1271–1280. https://doi.org/10.1007/s10803-014-2287-3
29. Mesh S. (2009). Overcoming the Challenges of Assessing Young Children for Autism. Retrieved from: https://myut.ut.edu.sa/ut//init;jsessionid=4Y1vkdmdLiKcOHO8QxkrGJN5BZKwI_BvPRSruOpX5YaF4gzkfIJh!-1189740912
30. Mockett, M., Khan, J., & Theodosiou, L. (2011). Parent perceptions of a Manchester Service for autistic spectrum disorders. International Journal of Family Medicine,201. https://doi.org/10.1155/2011/601979
31. Perry, A., Condillac, R. M., & Freeman, N.L. (2002). Best practice and strategies for assessment and diagnosis of autism. Journal of Development Disability, 61-75.
32. Prizant, B. (2012). On the diagnosis and misdiagnosis of autism spectrum disorder. Autism Spectrum Disorder,53-60
33. Richler, J., Huerta, M., Bishop, S., & Lord, C. (2010). Developmental trajectories of restricted and repetitive behaviors and interests in children with autism spectrum disorders. Dev Psychopathol.22(1),55–69. https://doi.org/10.1017/s0954579409990265
34. Russel, G., Ford, T., Steer, C., & Golding, G. (2010). Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their services use. Journal of Child Psychology and Psychiatry, 51(6),463- 651. https://doi.org/10.1111/j.1469-7610.2010.02233.x
35. Rynkiewicz, A., Łucka, I. (2018). Autism spectrum disorder (ASD) in girls. Co-occurring psychopathology. Sex differences in clinical manifestation. Psychiatr Pol,52(4),629–639. https://doi.org/10.12740/pp/onlinefirst/58837
36. Saggu, R. (2015). Parental Perceptions of the Diagnostic Process for Autism Spectrum Disorder in British Columbia. [Unpublished doctoral dissertation]. Walden University.
37. Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family Experiences Through the Autism Diagnostic Process. Focus on Autism and Other Developmental Disabilities, 27(2), 81-92. https://doi.org/10.1177/1088357612446860
38. Siegel, B. (1996). The world of the autistic child: Understanding and treating autism spectrum disorders. New York, NY: Oxford University Press.
39. Stozler, S. (2011). Parental Perceptions of the Diagnosis Process of Their Young Child with Special Needs. [Unpublished Doctoral Dissertation], Loyola University Chicago.
40. Thabtah, F., Peebles, D. (2019). Early autism screening: a comprehensive review. Int J Environ Res Public Health,16(18),3502. https://doi.org/10.3390/ijerph16183502
41. Werner, E., Dawson, G., Munson, J., & Osterling, J. (2005). Variation in early developmental course in autism and its relation with behavioral outcome at 3- 4 years of age. Journal of Autism and Developmental Disorders, 35(3), 337– 350. http://dx.doi.org/10.1007/s10803-005-3301-6
42. Whiteley, P., Rodgers, J., & Shattock, P. (1998). Clinical features associated with autism: observations of symptoms outside the diagnostic boundaries of autism spectrum disorders. Autism, 2, 145-422. http://dx.doi.org/10.1007/s10803- 005-3301-6
43. Wiggins L., Reynolds, A., Rice C., Moody, E., Benal, P., Bkaskey, L., Resenberg, S.,
44. Zwaigenbaum, L., Bryson, S., & Garon, N. (2013). Early identification of autism spectrum disorders. Behavioral Brain Research,15(251),133-146. https://doi.org/10.1016/j.bbr.2013.04.004
Published
2024-06-09
How to Cite
Muhammad Akram Hamdan. (2024). Challenges Facing Parents and Specialists in Diagnosing Children with Autism Spectrum Disorder in the Tabuk Region. Journal of Arts, Literature, Humanities and Social Sciences, (106), 381-394. https://doi.org/10.33193/JALHSS.106.2024.1132
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