Singularities and social impact of severe autism in Brazil
Keywords:
severe autism, singularities, social impact, public policy, quality of life.Abstract
Severe autism is one of the levels of impairment of Autistic Spectrum Disorder, described in the Diagnostic and Statistical Manual of Mental Disorders in its fifth version. This study describes severe autism according to the scientific literature and discusses, from the information produced by the participants, its social impact on the family life of this subject. The research is characterized as descriptive-explanatory with quantitative and qualitative data in a perspective of qualitative approach for data analysis and interpretation. The results point to the intense suffering experienced by people with severe autism, as well as their families, as well as social impacts due to the absence of effective public policies that favor their quality of life and social inclusion. It is concluded that the invisibility of severe autism in Brazilian society is a factor that promotes and perpetuates mechanisms of social exclusion, besides the evidence of the need for further studies, research and dissemination on the subject.Downloads
References
1. Sellin B. Une âme prisonnière. París: Editeur Robert Laffont; 1993.
2. Kanner L. Autisc Disturbances of Affective Contact. Nervous Child [Internet]. 1943 [cited 13/11/2019]; 2 (1943): 217-250. Available from: http://mail.neurodiversity.com/library_kanner_1943.pdf
3. Kanner L. Early infantile autism. Journal of Pediatrics [Internet]. 1944 [cited 13/11/2019];25(3):211-217. Available from: https://doi.org/10.1016/S0022-3476(44)80156-1
4. Kanner L, Eisenberg L. Notes on the follow-up studies of autistic children. In Hoch P, Zubin J. Psychopathology of Childhood. New York: Grune & Stratton; 1955; p. 227-239.
5. Kanner L. Follow up study of eleven autistic children originally reported in 1943. Journal of Autism and Childhood Schizophrenia [Internet]. 1971 [cited 13/11/2019]; 1 (1): 119-145 . Available from: https://doi.org/10.1007/BF01537953
6. United Nations Organization (ONU) [Internet]. New York: Refugees and Migrants [update 31/03/2017; cited 13/11/2019]. UN calls for recognizing the rights of people with autism to make their own decisions; [aprox. 2 telas]. Available from: https://refugeesmigrants.un.org/un-calls-recognizing-rights-people-autism-make-their-own-decisions
7. Ciaranello AL, Ciaranello RD The neurobiology of infantile autism. Rev. Neurosc [Internet]. 1995 [cited 20/11/2019];1(6):361-367. Available from: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.1015.3377&rep=rep1&type=pdf
8. Satterstrom FK. Large-Scale Exome Sequencing Study Implicates Both Developmental and Functional Changes in the Neurobiology of Autism. Cell [Internet]. 2020 [citado 20/02/2020];180 (3):568-584. Disponível em: https://doi.org/10.1016/j.cell.2019.12.036
9. Hadjkacem I. Prenatal, perinatal and postnatal factors associated with autism spectrum disorder. Jornal de Pediatria [Internet]. 2016 [cited 10/02/2020];92(6):595-601. Available from: https://doi.org/10.1016/j.jpedp.2016.08.011
10. Bellinger D. Comparing the population neurodevelopmental burdens associated with children's exposures to environmental chemicals and other risk factors. Neurotoxicology [Internet]. 2012 [cited 20/11/2019];33 (4): 641-643. Available from: https://doi.org/10.1016/j.neuro.2012.04.003
11. Geier DA, Hooker BS, Kern JK, King PG, Sykes LK, Geier MR. A two-phase study evaluating the relationship between Thimerosal-containing vaccine administration and the risk for an autism spectrum disorder diagnosis in the United States. Translational Neurodegeneration [Internet]. 2013 [cited 20/11/2019];2 (25):1-12 . Available from: https://translationalneurodegeneration.biomedcentral.com/articles/10.1186/2047-9158-2-25
12. Mohamed FEB. Assessment of Hair Aluminum, Lead, and Mercury in a Sample of Autistic Egyptian Children: Environmental Risk Factors of Heavy Metals in Autism. Behavioural Neurology [Internet]. 2015 [cited 18/12/2019];2015 (Article ID 545674):1-9. Available from: https://www.hindawi.com/journals/bn/2015/545674/
13. Sanders AP, Henn BC, Wright RO. Perinatal and Childhood Exposure to Cadmium, Manganese, and Metal Mixtures and Effects on Cognition and Behavior: A Review of Recent Literature. Current Environmental Health Reports [Internet]. 2015 [cited 18/12/2019];(2)1:284-294. Available from: https://link.springer.com/article/10.1007 %2Fs40572-015-0058-8
14. Martino D, Ganos C, Pringsheim TM. Tourette Syndrome and Chronic Tic Disorders: The Clinical Spectrum Beyond Tics. International Review of Neurobiology [Internet]. 2017 [cited 18/12/2019];134(1):1461-1490 . Available from: https://doi.org/10.1016/bs.irn.2017.05.006
15. Grandjean P, Landrigan PJ. Neurobehavioral effects of developmental toxicity. The Lancet Neurology [Internet]. 2014 [cited 18/12/2019];13(3):30-338 . Disponível em: https://doi.org/10.1016/S1474-4422(13)70278-3
16. Stessman HA, et al. Targeted sequencing identifies 91 neurodevelopmental-disorder risk genes with autism and developmental-disability biases. Nature Genetics [Internet]. 2017 [cited 18/12/2019];49(4):515-526. Available from: https://www.ncbi.nlm.nih.gov/pubmed/28191889
17. Russo FB, et al. Modeling the Interplay Between Neurons and Astrocytes in Autism Using Human Induced Pluripotent Stem Cells. Biological Psychiatry [Internet]. 2018 [cited 20/12/2019];83(7):569-578. Available from: https://doi.org/10.1016/j.biopsych.2017.09.021
18. Gauderer EC. Autismo, década de 80: uma atualização para os que atuam na área do especialista aos pais São Paulo: Sarvier; 1985.
19. Gillberg C. The neurobiology of infantile autismJ. Child. Psychol. Psychiatry [Internet]. 1988 [cited 15/11/2019];29(3):257-266. Available from: https://doi.org/10.1111/j.1469-7610.1988.tb00714.x
20. Rutter M, Shopler E. Autism and pervasive developmental disorders: Concepts and diagnostic issues. In Schopler E, Mesibov G. Diagnosis and assessment in autism. New York: Plenum Press; 1988.
21. Autism Society of America (ASA). Autism USA. Rockville, Maryland: Departament of Health and Human Services/Public Health Service National Institutes of Health; 1999.
22. Sacks O. Um antropólogo em Marte. São Paulo: Companhia das Letras; 1995.
23. Organização Mundial da Saúde (OMS). Classificação estatística internacional de doenças e problemas relacionados ? saúde - 10ª revisão. São Paulo, Brasil: Centro Colaborador da OMS para a Classificação de Doenças em Português/Edusp; 1993.
24. American Psychiatric Association (APA). Diagnostic and Statistical Manual of Mental Disorders - DSM-V. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
25. Wing L, Gould J. Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal Of Autism And Developmental Disorders [Internet]. 1979 [cited 20/11/2019];9:11-29. Available from: https://doi.org/10.1007/BF01531288
26. Lampreia C. Os enfoques cognitivista e desenvolvimentista no autismo: uma análise preliminar. Psicologia: Reflexão e Crítica [Internet]. 2004 [citado 02/12/2019];17(1):111-120. Disponível em: http://www.scielo.br/pdf/prc/v17n1/22311.pdf
27. Zanolla A. Causas genéticas, epigenéticas e ambientais do transtorno do espectro autista. Cadernos de Pós-graduação em Distúrbios do Desenvolvimento [Internet]. 2015 [citado 02/12/2019];15(2):29-42. Disponível em: https://www.mackenzie.br/fileadmin/arquivos/public/6-pos-graduacao/upm-higienopolis/mestrado-doutorado/disturbios_desenvolvimento/2015/cadernos/2/causas_gene__ticas__epigene__ticas_e_ambientais_do_transtorno_do_espectro_autista_.pdf
28. Bianchini NCP, Souza LAP. Autismo e comorbidades: achados atuais e futuras direções de pesquisa. Distúrbios da Comunicação [Internet]. 2014 [citado 20/12/2019];26(3):624-626. Disponível em: https://revistas.pucsp.br/dic/article/view/18180
29. Yang Xl. Are gastrointestinal and sleep problems associated with behavioral symptoms of autism spectrum disorder? Psychiatry Research [Internet]. 2018 [cited 20/12/2019];259(2018):229-235. Available from: https://doi.org/10.1016/j.psychres.2017.10.040
30. Holingue C, Newill C, Lee LC, Pasricha PJ, Daniele FM. Gastrointestinal symptoms in autism spectrum disorder: A review of the literature on ascertainment and prevalence. Autism Research [Internet]. 2017 [cited 22/12/2019];11(1):24-36. Available from: https://doi.org/10.1002/aur.1854
31. Nunes M, Bruni O. Insomnia in childhood and adolescence: clinical aspects, diagnosis, and therapeutic approach. Jornal de Pediatria [Internet]. 2015 [cited 22/12/2019];91(6):26-35. Available from: http://dx.doi.org/10.1016/j.jped.2015.08.006
32. Schreck KA, Mulick JA, Smith AF. Sleep problems as possible predictors of intensified symptoms of autism. Research In Developmental Disabilities [Internet]. 2004 [cited 22/12/2019];25(1):57-66. Available from: https://doi.org/10.1016/j.ridd.2003.04.007
33. Lakatos EM, Marconi MdA. Fundamentos de metodologia científica. 5th ed. São Paulo: Atlas; 2003.
34. Brasil. Lei de Diretrizes e Bases da Educação Nacional 1996. Publicada no Diário Oficial de Brasília, Brasil. Lei nº. 9394, (20 de dezembro de 1996).
35. Brasil. Política Nacional de Educação Especial na perspectiva da Educação Inclusiva. [Internet]. Brasília: Senado Federal; 2008 [citado 01/11/2019]. Disponível em: http://portal.mec.gov.br/arquivos/pdf/politicaeducespecial.pdf
36. Brasil. Lei que Institui a Política Nacional de Proteção dos Direitos da Pessoa com Transtorno do Espectro Autista. Publicada pela Presidência da República, Brasília, Brasil, Lei nº. 12764, (27 de dezembro de 2012).
37. Brasil. Lei que altera a Lei nº 8.069, de 13 de julho de 1990 (Estatuto da Criança e do Adolescente), para tornar obrigatória a adoção pelo Sistema Único de Saúde (SUS) de protocolo que estabeleça padrões para a avaliação de riscos para o desenvolvimento psíquico das crianças. Publicada pela Presidência da República, Brasília, Brasil, Lei nº. 13.438, (26 de abril de 2017).
38. Brasil. Lei Orgânica da Assistência Social. Publicada pela Presidência da República, Brasília, Brasil, Lei nº 8742/93, (07 de dezembro de 1993).
39. Buesher AVS, Cidav Z, Knapp M, Mandell DS. Costs of Autism Spectrum Disorders in the United Kingdom and the United States. Jama Pediatrics [Internet]. 2014 [cited 22/12/2019];168(8):721-728. Available from: https://jamanetwork.com/journals/jamapediatrics/fullarticle/1879723
40. Järbrink K. The economic consequences of autistic spectrum disorder among children in a Swedish municipality.SAGE Publications [Internet]. 2007 [cited 22/12/2019];11(5):453-463. Available from: https://doi.org/10.1177/1362361307079602
41. Orrú SE. Aprendizes com autismo: aprendizagem por eixos de interesse em espaços não excludentes Rio de Janeiro: Vozes; 2016.
42. Orrú SE. Contribuições da abordagem histórico-cultural na educação de alunos autistas. Rev Hum Med. [Internet]. 2010 [citado 22/12/2019];10(3):1-11. Disponível em: http://scielo.sld.cu/scielo.php?script=sci_arttext&pid=S1727-81202010000300002
43. Aran A, Hanoch C, Lubotzky A. Cannabidiol Based Medical Cannabis in Children with Autism: a Retrospective Feasibility Study. Neurology [Internet]. 2018 [cited 22/12/2019];90(15):3-318. Available from: https://n.neurology.org/content/90/15_Supplement/P3.318
44. Aran A, Cassuto E, Lubotzky A, Wattad N, Hazan E. Brief Report: Cannabidiol-Rich Cannabis in Children with Autism Spectrum Disorder and Severe Behavioral Problems-A Retrospective Feasibility Study. J Autism Dev Disord [Internet]. 2019 [cited 22/12/2019];49(3):1284–1288. Available from: https://doi.org/10.1007/s10803-018-3808-2
45. Kaplan J, Stella N, Catterall WA, Westenbroek RE. Cannabidiol attenuates seizures and social deficits in a mouse model of Dravet syndrome. Proceedings of the National Academy of Sciences [Internet]. 2017 [cited 22/12/2019];114(42):11229-11234. Available from: https://doi.org/10.1073/pnas.1711351114
46. Gontijo EC, Castro GL, Petito ADC, Petito G. Canabidiol e suas aplicações terapêuticas. Refacer - Revista Eletrônica da Faculdade de Ceres [Internet]. 2016 [citado 23/12/2019];5(1):1-9. Disponível em: http://periodicos.unievangelica.edu.br/index.php/refacer/article/view/3360/2360
47. Hussain S. Perceived efficacy of cannabidiol-enriched cannabis extracts for treatment of pediatric epilepsy: a potential role for infantile spasms and Lennox–Gastaut syndrome. Epilepsy & Behavior [Internet]. 2015 [cited 23/12/2019];47(2015):138-141. Available from: https://doi.org/10.1016/j.yebeh.2015.04.009
48. Press C, Knupp K, Chapman K. Parental reporting of response to oral cannabis extracts for treatment of refractory epilepsy. Epilepsy & Behavior [Internet]. 2015 [cited 23/12/2019];45(2015):49-52. Available from: https://doi.org/10.1016/j.yebeh.2015.02.043
49. Fischer B, Kuganesan S, Gallassi A, Malcher-Lopes R, Brink WV, Wood E. Addressing the stimulant treatment gap: A call to investigate the therapeutic benefits potential of cannabinoids for crack-cocaine use. International Journal of Drug Policy [Internet]. 2015 [cited 23/12/2019];26:1177-1182. Available from: https://www.calgarycmmc.com/Addressing-the-stimulant-treatment-gap-A-call-to-investigate-the-therapeutic-benefits-potential-of-cannabinoids-for-crack-cocaine-use.pdf
50. Malcher-Lopes R. Canabinoides ajudam a desvendar aspectos etiológicos em comum e trazem esperança para o tratamento de autismo e epilepsia. Revista da Biologia [Internet]. 2014 [citado 23/12/2019];13(1):43-59. Disponível em: http://www.revistas.usp.br/revbiologia/article/view/109133/107638
Published
How to Cite
Issue
Section
License
DECLARACIÓN DE AUTORÍA Y BUENAS PRÁCTICAS (i)
A: Comité editorial Revista Humanidades Médicas
Título del trabajo:
DECLARACIÓN DE ORIGINALIDAD Y CARÁCTER INÉDITO DEL TRABAJO
- Este trabajo es original e inédito, no se ha enviado ni se enviará a otra revista para su publicación, salvo que sea rechazado.
- Ninguno de los datos presentados en este trabajo ha sido plagiado, inventado, manipulado o distorsionado.
-Los datos originales se distinguen claramente de los ya publicados.
- Se identifican y citan las fuentes originales en las que se basa la información contenida en el manuscrito, así como las teorías y los datos procedentes de otros trabajos previamente publicados.
- Se cita adecuadamente en el artículo la procedencia de las figuras, tablas, datos, fotografías, etc., previamente publicados, y se aportan los permisos necesarios para su reproducción en cualquier soporte.
- Se ha obtenido el consentimiento de quienes han aportado datos no publicados obtenidos mediante comunicación verbal o escrita, y se identifican adecuadamente dicha comunicación y autoría.
AUTORÍA
Las personas que firman han brindado sus:
- Contribuciones sustanciales a la concepción y el diseño.
- Contribuciones sustanciales a la adquisición de datos, su análisis e interpretación.
- La redacción del artículo o la revisión crítica del contenido intelectual.
- La aprobación final de la versión que se propone para la publicación.
- No se ha omitido ninguna firma responsable del trabajo y se satisfacen los criterios de autoría científica.
OBTENCIÓN DE DATOS E INTERPRETACIÓN DE RESULTADOS
- Quienes firman este trabajo han evitado cometer errores en su diseño experimental o teórico, en la presentación de los resultados y en su interpretación. En caso de que descubrieran cualquier error en el artículo, antes o después de su publicación, alertarán inmediatamente a la Dirección de la revista.
- Los resultados de este estudio se han interpretado objetivamente. Cualquier resultado contrario al punto de vista de quienes firman se expone y discute en el artículo.
AGRADECIMIENTOS
- Se reconocen todas las fuentes de financiación concedidas para este estudio, indicando de forma concisa el organismo financiador y el código de identificación.
- En los agradecimientos se menciona a las personas que, habiendo colaborado en la elaboración del trabajo, no figuran en el apartado de autoría ni son responsables de la elaboración del manuscrito.
CONFLICTO DE INTERESES
- En el apartado de observaciones los firmantes del texto informan de cualquier vínculo comercial, financiero o particular con personas o instituciones que pudieran tener intereses relacionados con el trabajo propuesto.
- Los autores declaran que no poseen conflicto de intereses respecto a este texto.
DERECHOS Y DISTRIBUCIÓN
- La revista Humanidades Médicas distribuye en Internet la versión del artículo bajo los términos de una Licencia Creative Commons (CC) 4.0. (CC BY-NC-SA 4.0) Atribución-No Comercial-Compartir Igual 4.0 Internacional.
Autor/a principal y de correspondencia: ________ Firma: ______________________
Coautor/a: _____________________________
Firma: ______________________
Coautor/a: _______________________________
Firma: ______________________
Coautor/a: _______________________________
Firma: ______________________
(i)Tomado y adaptado de: Declaración de autoría, buenas prácticas y cesión de derechos. CSIC [Internet]. 2017 [citado 15 May 2019];2. Disponible en: http://revistas.csic.es/public/guia_buenas_practicas_CSIC.pdf y http://revistas.csic.es/public/formulario_declaracion_autoria.pdf
