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FROM SUSPICION TO TREATMENT: CHALLENGES IN AUTISM SPECTRUM DISORDER FROM THE PERSPECTIVE OF FAMILIES

Year 2020, Issue: 15, 35 - 49, 30.06.2020
https://doi.org/10.46218/tshd.718067

Abstract


Aim: We aim to determine the level of awareness regarding Autism Spectrum Disorder (ASD) that parents of children diagnosed with ASD, identify the problems they encounter in their daily lives and social areas. Method: The study included 109 parents whose children had previously been diagnosed with ASD according to the DSM-5 and were being followed up at the Child Psychiatry Clinic and who provided written consent for participation in the study. The questionnaire that was developed to be used in the study after a thorough literature review on the subject consisted of 83 questions directed at assessing the parents in terms of their level of knowledge about ASD, the difficulties they encountered diagnosis process. Results: Some of the noteworthy findings of our work include: Of the participants, 56% stated never hearing of ASD before, 61% not knowing that the level of intelligence could vary in ASD, and 74% thinking of ASD as a disorder seen only in children. 52% of the participants reported that the development of their children between ages 0-2 was monitored at a regular health center, 88% reported that the first to grow concerned about the development of their children were themselves and their extended family and 52.3% reported that their concerns about the development of their children appeared at ages 1-2. Consequently, the findings point out that families with autism have difficulties with the whole process. Conclusion: ASD awareness, which is counted among factors that obstruct children with autism from being involved in social life, is one of the areas that have been studied extensively. But, it is quite important that awareness training is provided to the public, healthcare professionals, and parents of children diagnosed with autism, especially by mental health professionals.Rehabilitation Center can be taken as an example in substance addiction treatment and rehabilitation applications in our country.        

References

  • Akdem, F., & Akel, B. S. (2014). Otizmli bireylerin bakım verenlerinin yaşam kalitesi ve zaman yönetimini etkileyen faktörlerin incelenmesi. Ergoterapi ve Rehabilitasyon Dergisi, 2(3), 121-129.
  • Avsaroglu, S., & Gilik, A. (2017). An examination of hopelessness levels of parents with special needs according to their anxiety situations. Elementary Education Online, 16(3), 1022-1035.
  • Baird, G., Cass, H., & Slonims, V. (2003). Diagnosis of autism. Bmj, 327(7413), 488-493.
  • Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M., McAdam, D. B., Butter, E., Stillitano, C., & Minshawi, N. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. Jama, 313(15), 1524-1533.
  • Campbell, M., Schopler, E., Cueva, J. E., & Hallin, A. (1996). Treatment of autistic disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 35(2), 134-143.
  • Dillenburger, K., Jordan, J. A., McKerr, L., Devine, P., & Keenan, M. (2013). Awareness and knowledge of autism and autism interventions: A general population survey. Research in Autism Spectrum Disorders, 7(12), 1558-1567.
  • Disabilities, C. o. C. w. (2001). The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5), 1221-1226.
  • Erden, G., Akçakın, M., Gümüş Doğan, D., & Öztürk Ertem, İ. (2010). Pediatricians and autism: difficulties in diagnosis. Turkiye Klinikleri J Pediatr, 19(1), 9-15.
  • Fernell, E., Eriksson, M. A., & Gillberg, C. (2013). Early diagnosis of autism and impact on prognosis: a narrative review. Clinical epidemiology, 5, 33.
  • Fitzgerald, M., Birkbeck, G., & Matthews, P. (2002). Maternal burden in families with children with autistic spectrum disorder. The Irish Journal of Psychology.
  • Freckelton, I. (2013). Autism spectrum disorder: Forensic issues and challenges for mental health professionals and courts. Journal of Applied Research in Intellectual Disabilities, 26(5), 420-434.
  • Heidgerken, A. D., Geffken, G., Modi, A., & Frakey, L. (2005). A survey of autism knowledge in a health care setting. Journal of Autism and Developmental Disorders, 35(3), 323-330.
  • Jacobson, J. W., & Mulick, J. A. (2000). System and cost research issues in treatments for people with autistic disorders. Journal of Autism and Developmental Disorders, 30(6), 585-593.
  • Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217-250.
  • Karpat, D., & Girli, A. (2012). The analysis of social support perceptions, marital adjustment and grief of parents with pervasıve development disorder diagnosed children. Özel Eğitim Dergisi, 13(2), 69-85.
  • Kars, S., & Akyürek, G. Otizmin Basılı Medyada Temsili: Ulusal Eylem Planından Sonraki Sürecin İncelenmesi. Ergoterapi ve Rehabilitasyon Dergisi, 8(1), 187-194.
  • Koegel, R. L., Symon, J. B., & Kern Koegel, L. (2002). Parent education for families of children with autism living in geographically distant areas. Journal of Positive Behavior Interventions, 4(2), 88-103.
  • Koyama, T., Tachimori, H., Sawamura, K., Koyama, A., Naganuma, Y., Makino, H., & Takeshima, T. (2009). Mental health literacy of autism spectrum disorders in the Japanese general population. Social psychiatry and psychiatric epidemiology, 44(8), 651-657.
  • Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), e520-e529.
  • Lord, C. (1995). Follow‐up of two‐year‐olds referred for possible autism. Journal of Child Psychology and Psychiatry, 36(8), 1365-1382.
  • Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41(12), 1447-1453.
  • Mandell, D. S., & Novak, M. (2005). The role of culture in families' treatment decisions for children with autism spectrum disorders. Mental retardation and developmental disabilities research reviews, 11(2), 110-115.
  • Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480-1486.
  • Mars, A. E., Mauk, J. E., & Dowrick, P. W. (1998). Symptoms of pervasive developmental disorders as observed in prediagnostic home videos of infants and toddlers. The Journal of pediatrics, 132(3), 500-504.
  • Preeti, K., Srinath, S., Seshadri, S. P., Girimaji, S. C., & Kommu, J. V. S. (2017). Lost time—Need for more awareness in early intervention of autism spectrum disorder. Asian journal of psychiatry, 25, 13-15.
  • Roleska, M., Roman-Urrestarazu, A., Griffiths, S., Ruigrok, A. N., Holt, R., Van Kessel, R., McColl, K., Sherlaw, W., Brayne, C., & Czabanowska, K. (2018). Autism and the right to education in the EU: Policy mapping and scoping review of the United Kingdom, France, Poland and Spain. PloS one, 13(8), e0202336.
  • Schultz, T. R., Schmidt, C. T., & Stichter, J. P. (2011). A review of parent education programs for parents of children with autism spectrum disorders. Focus on autism and other developmental disabilities, 26(2), 96-104.
  • Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921-933.
  • Silverman, C. (2011). Understanding autism: Parents, doctors, and the history of a disorder. Princeton University Press.
  • Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929.
  • Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86-97.
  • Surmen, A., Hidiroglu, S., Usta, H. H., Awiwi, M., Oguz, A. S., Karavus, M., & Karavus, A. (2015). A study exploring knowledge, attitudes and behaviours towards autism among adults applying to a Family Health Center in Istanbul. Northern clinics of Istanbul, 2(1), 13.
  • Töret, G., Özdemir, S., Gürel Selimoğlu, Ö., & Özkubat, U. (2014). Otizmli çocuğa sahip olan ebeveynlerin görüşleri: Otizm tanımlamaları ve otizmin nedenleri.
  • Volkmar, F., Cook, E. H., Pomeroy, J., Realmuto, G., & Tanguay, P. (1999). Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 38(12), 32S-54S.
  • Wang, J., Zhou, X., Xia, W., Sun, C., Wu, L., & Wang, J. (2012). Autism awareness and attitudes towards treatment in caregivers of children aged 3–6 years in Harbin, China. Social psychiatry and psychiatric epidemiology, 47(8), 1301-1308.
  • Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: is the prevalence rising? Mental retardation and developmental disabilities research reviews, 8(3), 151-161.

ŞÜPHEDEN TEDAVİYE OTİZM SPEKTRUM BOZUKLUĞUNDA AİLELERİN GÖZÜNDEN YAŞANAN SORUNLAR

Year 2020, Issue: 15, 35 - 49, 30.06.2020
https://doi.org/10.46218/tshd.718067

Abstract

Otizm Spektrum Bozukluğu (OSB) tanısı alan çocukların ebeveynlerinin günlük yaşamlarında ve sosyal alanlarda karşılaştıkları sorunları ortaya koymayı amaçlamaktayız. Çalışmaya, DSM-5'e göre OSB tanısı konulan, çocuk psikiyatri kliniğinde takip edilen ve çalışmaya katılım için yazılı onam veren 109 ebeveyn dâhil edilmiştir. Konuyla ilgili kapsamlı bir literatür taramasından sonra çalışmada kullanılmak üzere geliştirilen anket; OSB hakkındaki bilgi düzeyleri, tanı ve tedavi sürecinde karşılaştıkları güçlükleri değerlendirmeye yönelik 83 soruyu kapsamaktadır. Katılımcıların % 56'sı OSB'yi daha önce hiç duymadığını, %61'inin OSB'de zekâ düzeyinin değişebileceğini bilmediğini ve % 74'ünün OSB'yi sadece çocuklarda görülen bir bozukluk olarak düşündüğünü belirtmiştir. Katılımcıların % 52'si 0-2 yaş arası çocuklarının gelişimini düzenli bir sağlık merkezinde izlendiğini, % 88'i çocuklarının gelişimi konusunda kaygılanan ilk kişilerin kendileri ve geniş aileleri olduğunu ve % 52,3'ü çocuklarının gelişimiyle ilgili kaygılarının 1-2 yaşlarında olduğunu bildirmiştir. Otizmli çocukları sosyal yaşama dâhil etmeyi engelleyen faktörler arasında sayılan OSB farkındalığı, yoğun olarak çalışılan alanlardan birisidir. Ancak, özellikle ruh sağlığı uzmanları tarafından topluma, sağlık çalışanlarına ve otizm tanısı konulan çocukların ebeveynlerine farkındalık eğitimi verilmesi oldukça önemlidir.

References

  • Akdem, F., & Akel, B. S. (2014). Otizmli bireylerin bakım verenlerinin yaşam kalitesi ve zaman yönetimini etkileyen faktörlerin incelenmesi. Ergoterapi ve Rehabilitasyon Dergisi, 2(3), 121-129.
  • Avsaroglu, S., & Gilik, A. (2017). An examination of hopelessness levels of parents with special needs according to their anxiety situations. Elementary Education Online, 16(3), 1022-1035.
  • Baird, G., Cass, H., & Slonims, V. (2003). Diagnosis of autism. Bmj, 327(7413), 488-493.
  • Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M., McAdam, D. B., Butter, E., Stillitano, C., & Minshawi, N. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. Jama, 313(15), 1524-1533.
  • Campbell, M., Schopler, E., Cueva, J. E., & Hallin, A. (1996). Treatment of autistic disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 35(2), 134-143.
  • Dillenburger, K., Jordan, J. A., McKerr, L., Devine, P., & Keenan, M. (2013). Awareness and knowledge of autism and autism interventions: A general population survey. Research in Autism Spectrum Disorders, 7(12), 1558-1567.
  • Disabilities, C. o. C. w. (2001). The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5), 1221-1226.
  • Erden, G., Akçakın, M., Gümüş Doğan, D., & Öztürk Ertem, İ. (2010). Pediatricians and autism: difficulties in diagnosis. Turkiye Klinikleri J Pediatr, 19(1), 9-15.
  • Fernell, E., Eriksson, M. A., & Gillberg, C. (2013). Early diagnosis of autism and impact on prognosis: a narrative review. Clinical epidemiology, 5, 33.
  • Fitzgerald, M., Birkbeck, G., & Matthews, P. (2002). Maternal burden in families with children with autistic spectrum disorder. The Irish Journal of Psychology.
  • Freckelton, I. (2013). Autism spectrum disorder: Forensic issues and challenges for mental health professionals and courts. Journal of Applied Research in Intellectual Disabilities, 26(5), 420-434.
  • Heidgerken, A. D., Geffken, G., Modi, A., & Frakey, L. (2005). A survey of autism knowledge in a health care setting. Journal of Autism and Developmental Disorders, 35(3), 323-330.
  • Jacobson, J. W., & Mulick, J. A. (2000). System and cost research issues in treatments for people with autistic disorders. Journal of Autism and Developmental Disorders, 30(6), 585-593.
  • Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217-250.
  • Karpat, D., & Girli, A. (2012). The analysis of social support perceptions, marital adjustment and grief of parents with pervasıve development disorder diagnosed children. Özel Eğitim Dergisi, 13(2), 69-85.
  • Kars, S., & Akyürek, G. Otizmin Basılı Medyada Temsili: Ulusal Eylem Planından Sonraki Sürecin İncelenmesi. Ergoterapi ve Rehabilitasyon Dergisi, 8(1), 187-194.
  • Koegel, R. L., Symon, J. B., & Kern Koegel, L. (2002). Parent education for families of children with autism living in geographically distant areas. Journal of Positive Behavior Interventions, 4(2), 88-103.
  • Koyama, T., Tachimori, H., Sawamura, K., Koyama, A., Naganuma, Y., Makino, H., & Takeshima, T. (2009). Mental health literacy of autism spectrum disorders in the Japanese general population. Social psychiatry and psychiatric epidemiology, 44(8), 651-657.
  • Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), e520-e529.
  • Lord, C. (1995). Follow‐up of two‐year‐olds referred for possible autism. Journal of Child Psychology and Psychiatry, 36(8), 1365-1382.
  • Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41(12), 1447-1453.
  • Mandell, D. S., & Novak, M. (2005). The role of culture in families' treatment decisions for children with autism spectrum disorders. Mental retardation and developmental disabilities research reviews, 11(2), 110-115.
  • Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480-1486.
  • Mars, A. E., Mauk, J. E., & Dowrick, P. W. (1998). Symptoms of pervasive developmental disorders as observed in prediagnostic home videos of infants and toddlers. The Journal of pediatrics, 132(3), 500-504.
  • Preeti, K., Srinath, S., Seshadri, S. P., Girimaji, S. C., & Kommu, J. V. S. (2017). Lost time—Need for more awareness in early intervention of autism spectrum disorder. Asian journal of psychiatry, 25, 13-15.
  • Roleska, M., Roman-Urrestarazu, A., Griffiths, S., Ruigrok, A. N., Holt, R., Van Kessel, R., McColl, K., Sherlaw, W., Brayne, C., & Czabanowska, K. (2018). Autism and the right to education in the EU: Policy mapping and scoping review of the United Kingdom, France, Poland and Spain. PloS one, 13(8), e0202336.
  • Schultz, T. R., Schmidt, C. T., & Stichter, J. P. (2011). A review of parent education programs for parents of children with autism spectrum disorders. Focus on autism and other developmental disabilities, 26(2), 96-104.
  • Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921-933.
  • Silverman, C. (2011). Understanding autism: Parents, doctors, and the history of a disorder. Princeton University Press.
  • Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929.
  • Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86-97.
  • Surmen, A., Hidiroglu, S., Usta, H. H., Awiwi, M., Oguz, A. S., Karavus, M., & Karavus, A. (2015). A study exploring knowledge, attitudes and behaviours towards autism among adults applying to a Family Health Center in Istanbul. Northern clinics of Istanbul, 2(1), 13.
  • Töret, G., Özdemir, S., Gürel Selimoğlu, Ö., & Özkubat, U. (2014). Otizmli çocuğa sahip olan ebeveynlerin görüşleri: Otizm tanımlamaları ve otizmin nedenleri.
  • Volkmar, F., Cook, E. H., Pomeroy, J., Realmuto, G., & Tanguay, P. (1999). Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 38(12), 32S-54S.
  • Wang, J., Zhou, X., Xia, W., Sun, C., Wu, L., & Wang, J. (2012). Autism awareness and attitudes towards treatment in caregivers of children aged 3–6 years in Harbin, China. Social psychiatry and psychiatric epidemiology, 47(8), 1301-1308.
  • Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: is the prevalence rising? Mental retardation and developmental disabilities research reviews, 8(3), 151-161.
There are 36 citations in total.

Details

Primary Language Turkish
Subjects Sociology (Other)
Journal Section Research Article
Authors

Bahadır Turan

İbrahim Selçuk Esin

Elif Abanoz

Onur Burak Dursun

Publication Date June 30, 2020
Submission Date April 10, 2020
Published in Issue Year 2020 Issue: 15

Cite

APA Turan, B., Esin, İ. S., Abanoz, E., Dursun, O. B. (2020). ŞÜPHEDEN TEDAVİYE OTİZM SPEKTRUM BOZUKLUĞUNDA AİLELERİN GÖZÜNDEN YAŞANAN SORUNLAR. Tıbbi Sosyal Hizmet Dergisi(15), 35-49. https://doi.org/10.46218/tshd.718067