Día Mundial de Concienciación del Autismo, ¿cuánto hemos avanzado como sociedad?
- Por Valeska Ananías, directora clínica Centro Neurocognitivo Infanto Juvenil Psicoeduka.
Este viernes 2 de abril nuevamente el mundo se teñirá de azul para poder visibilizar una condición invisible como lo es el trastorno del espectro autista, puesto que es el Día Mundial de Concienciación sobre el Autismo, una fecha instaurada por la Asamblea General de las Naciones Unidas con el objetivo de concienciar a la sociedad sobre la necesidad de mejorar la calidad de vida de los niños y adultos con autismo, para que puedan vivir de una manera plena y digna, y de esta forma sensibilizar, e informar a las personas y romper las barreras de los prejuicios, mitos y discriminación.
Se calcula que uno de cada 160 niños tiene un Trastorno del Espectro Autista (TEA) y según los estudios epidemiológicos realizados en los últimos 50 años, la prevalencia mundial de estos trastornos parece estar aumentando. En Chile, según la Guía de Práctica Clínica, Detención y Diagnóstico Oportuno de los TEA del ministerio de Salud, no existe un registro del diagnóstico de TEA.
El trastorno del espectro autista está conformado por trastornos del neurodesarrollo que empieza a notarse desde los primeros años de edad, se le llama espectro porque no hay una frontera clara entre uno y otro, pero si comparten una serie de señales y comportamientos tales como presentar algún grado de alteración del comportamiento social, la comunicación y el lenguaje (se le dificulta entender, relacionarse socialmente con otros), y por un repertorio de intereses y actividades restringido, estereotipado y repetitivo.
Esto quiere decir que son personas que procesan la información de manera diferente, tienen una manera distinta de aprender y viven día a día en un mundo que les cuesta comprender. Si bien, se trata de una condición que acompaña a la persona por toda la vida, y no tiene cura, se recomienda una intervención temprana que permita al niño o niña con TEA a desarrollar mejores habilidades para su vida que permitan adaptarse de mejor manera.
¿A qué señales hay que prestar atención? Como se mencionó anteriormente, los comportamientos del espectro autista empiezan a notarse desde muy pequeños, por ejemplo, hay que observar si a los 6 meses el bebé hace muy poco contacto visual o no sonríe mucho, o si al año no suele balbucear ni hacer gestos con la mano como saludar, apuntar con el dedo, o si notan que no responde a su nombre. A los dos años, una señal que podría llamar la atención es que presente dificultad para construir frases de dos palabras como “tengo hambre”, “quiero eso”, evite mirar a los ojos a los demás, tienda aislarse constantemente y/o realice movimientos repetitivos como mecerse o dar vueltas, repite constantemente palabras o frases tiene dificultades para hablar o se resiste a cambiar rutinas.
¿De qué nos sirve conocer las señales? Nos puede ayudar a identificar y apoyar casos cercanos a nosotros, en ese caso, es necesario acudir al pediatra o al psicólogo infantil para realizar una evaluación. Además, el comprender e informarnos sobre el TEA, nos puede ayudar a ser más comprensivos, tolerantes y empáticos con las personas con esta condición y sus familias.
Inclusión
Al principio de este artículo se habló de que una intervención temprana puede ayudar a que una persona con TEA pueda desarrollar mejores habilidades para su vida y adaptarse de mejor manera, sin embargo, también es necesario detenernos un poco ahí ¿Qué postura tenemos como sociedad para facilitar está adaptación? ¿Qué rol tiene el Estado para promover un espacio seguro, empático y libre de discriminación para que las personas con TEA puedan desenvolverse y que se garanticen sus derechos como los de los demás?
En muchos países, las personas con TEA carecen de acceso a servicios que apoyen, en igualdad de condiciones con los demás, su derecho a la salud, la educación, el empleo y la vida en comunidad. En Chile, aquello ha llevado a que la comunidad proponga el proyecto de Ley de Autismo, el cual “establece acciones positivas de inclusión para la contratación en el Sector Público de Personas en Condición de Espectro Autista”, como el mismo nombre de la moción lo indica, así como diversas modificaciones a la Ley contrataciones para el Sector Público, entre otros.
Experiencia como madre de niño con TEA
El pasado 26 de febrero, en el programa “Psicoeduka Contigo”, la apoderada Lucía Ferreira relató lo difícil que puede ser manejar el cómo reacciona el resto de la población a un niño TEA, ya que, al no ser una condición reconocible físicamente, quienes no están informados tienden a reaccionar desde el desconocimiento, desde el prejuicio, considerando a su hijo como un niño porfiado que está teniendo una pataleta, mientras que realmente está teniendo una crisis emocional o sensorial. Indica que ha tenido el agrado de poder conversar con nuevas generaciones, pequeños niños que se acercan a ella a preguntar por qué su hijo no habla o se comporta de tal manera. A criterio de Lucía, estas nuevas generaciones son mucho más receptivas a las diferencias que las generaciones mayores, ya que presentan un interés en integrar a la diversidad, en lugar de intentar aislarlo.
Lamentablemente, no todas las experiencias suelen ser así de gratas, la discriminación suele ser la regla más que la excepción, si bien, Lucía menciona que uno como familiar de un niño con TEA invierte su energía en estar pendiente de su hijo, por si tiene alguna crisis, más que en la reacción de los demás, como madre siente una vergüenza de formar parte de una sociedad que discrimina y no protege ni resguarda a los niños. Ni siquiera existe la posibilidad de que sean protegidos por medio de la ley, lo cual comenta con mucha frustración, tras contar varios episodios de discriminación cometidos por una vecina hacía su hijo, los cuales iban de insultar directamente a su hijo diciéndole “callen a ese niño enfermo mental, me molestan sus gritos”, hasta escribir reclamos del edificio, hablar con vecinos, decir que lo internen porque no puede vivir en sociedad porque molesta, incluso llegó a rociar RIDE, significando una situación de riesgo para la familia.
Sin embargo, se encontró con la realidad con la que se han topado muchos padres en su situación, la Ley no resguarda ni permite defender a los niños y niñas de estos episodios de discriminación y agresión, ya que no puede ser tipificado por algo más grave que discusión entre vecinos ni tampoco existió la posibilidad en ampararse ante la Ley Zamudio o también conocida como «Ley antidiscriminación», la cual tiene por objetivo fundamental instaurar un mecanismo judicial que permita restablecer eficazmente el imperio del derecho toda vez que se cometa un acto de discriminación arbitraria, estableciendo un procedimiento judicial y medidas sancionatorias en caso de comisión de un acto de ese tipo. En este caso, al no registrar la amenaza ni agresión, no se pudo amparar en esta ley, y si bien está contando con apoyo de vecinos y vecinas para afrontar esta situación, es necesario que el Estado se encargue de proteger y resguardar la integridad y los derechos de niños y niñas.
Lo que nos lleva a preguntarnos, ¿qué resguardo hay para los niños y niñas en una sociedad en donde la agresión verbal se invisibiliza? ¿hasta qué punto es necesario llegar o exponer a su hijo para que pueda realizar este procedimiento? Estudios indican de hecho, que la ley Zamudio está lejos de considerarse una normativa suficiente para frenar la violencia y que se trata de una ley extremadamente limitada, técnicamente defectuosa, de difícil interpretación, que omite el tratamiento de materias fundamentales del derecho antidiscriminatorio, y que se vincula fuertemente a solo un grupo discriminado. Una de las preocupaciones que Lucía menciona es que su hijo tenga que crecer en esta sociedad que no está preparada para defenderlo, en donde debe buscar la forma de explicarle su condición y luego explicarle que hay personas que no lo van a aceptar por eso, palabras que nos llaman a reflexionar en este día de concienciación de Autismo, sobre lo mucho que falta aún como sociedad en donde aún está latente la discriminación y el abandono Estado para proteger y resguardar los derechos de niños y niñas.
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