Identifying Gaps in Knowledge, Prevalence and Care of Children with Autism Spectrum Disorder in Tanzania – a Qualitative Review article
DOI:
https://doi.org/10.4314/tmj.v26i2.3Keywords:
Autism, TanzaniaAbstract
Introduction: Autism Spectrum Disorder (ASD) is a severe neuro-developmental disorder with onset in childhood and is being increasingly recognized worldwide. Recent statistics indicate an increase from 1 out of every 90 children to almost one out of every 60 children in USA. It has also been increasingly recognized in many African countries. In Tanzania, we are noticing a large gap in information on the knowledge, prevalence and care of children with ASD.
Methods: A systemic search and an extensive survey of the existing information about ASD in Tanzania was done using various tools, including interviewing key persons, visiting facilities and identifying potential resources available for improved care of children with ASD.
Results: There is very limited information available on children with Autism in Tanzania. There have been scattered information and no concerted efforts for these children. There are about 8 public schools registered with Ministry of Education and Vocational Training (MEVT) and about 8 centers, privately owned and not yet registered by the MEVT. The prevalence in these centers was 437 children which may be a gross underestimate, since these are predominantly in Dar-es-Salaam and the North-Eastern Regions in Tanzania. Information from other areas is not available. The education and care in the public facility is meager and the private facilities have a huge burden of costs, and are mainly donor dependant. There is also a lack of trained human resources to cater for these children.
Conclusion: There is need to draw attention to the policy makers on the need to identify, screen, increase trained human resources and provide quality care to these children with special education needs.
References
Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012. cdc.gov/epiinfo/7/index.htm accessed on 4th March, 2013
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm). accessed on 17th April, 2013 3. Karim K, Cook L, O'Reilly M. Diagnosing autistic spectrum disorder in the age of austerity. Child Care Health Dev. 2014; 40(1):115-23
Soares NS, Patel DR. Office screening and early identification of children with autism. Pediatr Clin North Am. 2012; 59(1):89-102.
Bazzano A, Zeldin A, Schuster E, Barrett C, Lehrer D. Vaccine-related beliefs and practices of parents of children with autism spectrum disorders. Am J Intellect Dev Disabil. 2012; 117(3):233-42. 6. Barbaro J, Dissanayake C. Autism spectrum disorders in infancy and toddlerhood: a review of the evidence on early signs, early identification tools, and early diagnosis. J Dev Behav Pediatr. 2009; 30(5):447-59. 7. Sunita, Bilszta JL. Early identification of autism: A comparison of the Checklist for Autism in Toddlers and the Modified Checklist for Autism in Toddlers. J Pediatric Child Health. 2013; 49(6):438-44. 8. Duarte CS, Bordin IAS, de Oliveria A, Bird H. The CBCL and the identification of children with autism and related conditions in Brazil: pilot findings. Journal of Autism and Developmental Disorders. 2003; 33:703–707. 9. Wong V, Hui L, Lee W, Leung L, Ho P, Lau W. et al. A modified screening tool for autism Checklist for Autism in Toddlers [CHAT-23] for Chinese children. Pediatrics .2004; 114(2), e166-76. 10. Wakabayashi A., Baron-Cohen, S., Wheelwright, S., & Tojo, Y. The Autism-Spectrum Quotient (AQ) in Japan: A cross-cultural Comparison. Journal of Autism and Developmental Disorders. 2006; 36:263–270. 11. Guthrie W, Swineford LB, Nottke C, and Wetherby AM .Early diagnosis of autism spectrum disorder: stability and change in clinical diagnosis and symptom presentation. J Child Psychol Psychiatry 2013 ;54(5):582-90 12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders Fifth Ed (DSM-V). Arlington, VA: American Psychiatric Publishing. 2013. pp. 5–25.ISBN 978-0-89042-555-8. 13. Schanding GT Jr, Nowell KP, Goin-Kochel RP. Utility of the social communication questionnaire-current and social responsiveness scale as teacher-report screening tools for autism spectrum disorders. J Autism Dev Disord. 2012; 42(8):1705-16. 14. Barton ML, Dumont-Mathieu T, Fein D. Screening young children for autism spectrum disorders in primary practice. J Autism Dev Disord. 2012; 42(6):1165-74.
http://www.autismepidemiology.net/epi_initiatives_05-2007.pdf. Accessed 17th April, 2013
Honigfeld L, Chandhok L, Spiegelman K. Engaging pediatricians in developmental screening: theeffectiveness of academic detailing. J Autism Dev Disord. 2012; 42(6):1175-82. 17. Lotter V. Childhood Autism in Africa. Journal of Child Psychology and Psychiatry. 1978; 19231-244 18. Sanua VD.Is infantile autism a universal phenomenon? An open question. Int J Soc Psychiatry. 1984; 30(3):163-77. 19. Bakare MO, Munir KM. Autism spectrum disorders (ASD) in Africa: a perspective. Afr J Psychiatry (Johannesbg). 2011; 14(3):208-10. 20. McGrew S, Malow BA, Henderson L, Wang L, Song Y, Stone WL. Developmental and behavioral questionnaire for autism spectrum disorders. Pediatr Neurol. 2007; 37(2):108-16. 21. García-Primo P, Martín-Arribas MC, Ferrari-Arroyo MJ, Boada L, García-de-Andres E, Posada de la Paz M. Autism, the big unknown. Georgian Med News. 2008 ;( 156):9-14. 22. Pinto-Martin JA, Young LM, Mandell DS, Poghosyan L, Giarelli E, Levy SE. Screening strategies for autism spectrum disorders in pediatric primary care. J Dev Behav Pediatr. 2008; 29(5):345-50. 23. Zwaigenbaum L, Bryson S, Lord C, Rogers S, Carter A, Carver L, et al. Clinical assessment and management of toddlers with suspected autism spectrum disorder: insights from studies of high-risk infants. Pediatrics. 2009; 123(5):1383-91. 24. Martínez-Pedraza Fde L, Carter AS. Autism spectrum disorders in young children. Child Adolesc Psychiatr Clin N Am. 2009; 18(3):645-63. 25. 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. . 26. Nygren G, Sandberg E, Gillstedt F, Ekeroth G, Arvidsson T, Gillberg C.A new screening programme for autism in a general population of Swedish toddlers. Res Dev Disabil. 2012; 33(4):1200-10. 27. Khan N, Hombarume J. Levels of autistic behavior among the mentally handicapped children in Zimbabwe. Cent Afr J Med. 1996; 42(2):36-9. 28. Gillberg C, Schaumann H, Gillberg IC. J Autism in immigrants: children born in Sweden to mothers born in Uganda. Intellect Disabil Res. 1995; 39:141-4. 29. Dhadphale M, Lukwago MG, Gajjar M. Infantile autism in Kenya. Indian J Pediatr. 1982; 49:145-8. 30. Ametepee LK, Chitiyo M. What we know about Autism in Africa: A brief Research Synthesis. The Journal of the International Association of Special edition. 2009; 10(1): 11-13
Igwe MN, Bakare MO, Agomoh AO, Onyeama GM, Okonkwo KO. Factors influencing knowledge about childhood autism among final year undergraduate Medical, Nursing and Psychology students of University of Nigeria, Enugu State, Nigeria. Ital J Pediatr. 2010; 36:44. 32. Zeglam AM, Maound AJ. Prevalence of autistic spectrum disorders in Tripoli, Libya: the need for more research and planned services. East Mediterr Health J. 2012; 18(2):184-8. 33. Warren Z, Stone W, Humberd Q.A training model for the diagnosis of autism in community pediatric practice. J Dev Behav Pediatr. 2009; 30(5):442-6. 34. Bakare MO, Ebigbo PO, Ubochi VN. Prevalence of autism spectrum disorder among Nigerian children with intellectual disability: a stopgap assessment. J Health Care Poor Underserved. 2012; 23(2):513-8. 35. Mankoski RE, Collins M, Ndosi NK, Mgalla EH, Sarwatt VV, Folstein SE. Etiologies of autism in a case-series from Tanzania. J Autism Dev Disord. 2006; 36(8):1039-51. 36. Le Couter A, Lord C, Rutter M. Autism Diagnostic Interview-Revised (ADI-R from University of Michigan Autism & Communication Disorders Research Center, Ann Arbor, MI . 2007); http://www.umaccweb.com/diagnostic_tools/adiinfo. html. Retrieved March 2013 37. Diagnostic and Statistical Manual for Mental disorders- Fourth edition, Revised. ISBN 978-0890420256. American Psychiatric Association. Published 2000. 38. Personal Communication (Manji KP- Pediatrician, Child Health Clinic , Kiwanuka Street, Dar-es-Salaam)
Personal Communication (Dr. Abbas Gangji, Trustee WF Autistic. Dr. Gangji A, http://www.world-federation. org/ Health/Autistic Centre/.
Personal Communication (Brenda Shrima –Director of Gabriella Centre, Moshi and Kerri Elliot of Autism Connects-http://www.autismconnectstanzania.org/ )
Personal Communication (Dr. Frank A, Sr. Matowo E of Department of Psychiatry and mental health, Muhimbili National Hospital, Dar-es-Salaam, Tanzania)
Personal Communication (Busweru Shadrack, epidemiologist, mental health Department at Ministry of Health and Social Welfare, Tanzania)
Personal Communication (Benjamin Kulwa –Director and Joachim Tamba Deputy Director- Special Needs Education Department, Ministry of Education and Vocational Training, Tanzania
Tomilson M. Swartz L. Imbalances in the Knowledge about infancy Infant Mental Health Journal. 2003; 24(6): 553
Omigbodun O. Developing child mental health services in resource-poor countries. Int Rev Psychiatry. 2008; 20(3):225-35 )
Laura F. Hippensteel. Comparative Study: Educating a Student with Autism in Tanzania and the United States. 2008; Free access document. Accessed on 7th May, 2013. http://trace.tennessee.edu/utk_chanhonoproj.
Eleweke CJ, Rodda M. The challenge of enhancing inclusive education in developing countries. International Journal of Inclusive Education. 2002; 6(2), 113-126.
Valentine Oforo. Journalist . The Citizen, 11th February, 2013. Dar-es-Salaam, Tanzania.