Elizabeth Escobedo, fundadora y presidenta de Autismo Rancagua, cuestiona la ausencia del Estado en la atención de personas con TEA (Trastorno del Espectro Autista) y destaca el propósito de la fundación: potenciar las habilidades de niñ@s y jóvenes diagnosticad@s para que transiten a la vida independiente de la mejor manera.
A.C. Mercado-Harvey
El sábado recién pasado se conmemoró el Día del Orgullo Autista. Pese a que es una celebración que lleva 16 años en nuestro país, es poco conocida. Como madre de un adulto TEA tengo sentimientos encontrados sobre tal celebración. Me parece fantástico que se haga conciencia, pero no todos los autistas opinan igual frente a sentir orgullo por no ser neurotípicos. Sobre este y otros temas hablamos con Elizabeth Escobedo, fundadora de Autismo Rancagua en 2011.
Cuéntame de cómo se inicia Autismo Rancagua, ¿Cuánto tiempo lleva y qué hace?
Autismo Rancagua nace hace 10 años por mi hijo Lucas, como consecuencia de tenerlo en una escuela especial, donde no hacían nada con él, ni siquiera sabían que podía hablar y lo ponían a hacer encajes todo el día y nada más. Estaba en una escuela en que no lo educaban. Tenían a los chicos en un extenso período por una cuestión de subvención, no los preparan para la vida adulta, para ser más autónomos y terminan a los 24 años yéndose para su casa sin saber hacer nada. Las escuelas especiales son para hacer coffee break y servirle a la gente, generando lástima o haciendo aseo. Todos los TEA tienen un tipo de inteligencia diferente, todos tienen habilidades que no se trabajan. El objetivo de Autismo Rancagua es ese: poder potenciar las habilidades y hacer un tránsito a la vida independiente de la mejor manera, dentro de las posibilidades que tenga cada uno de ellos. De hecho, Joaquín se tituló como diseñador gráfico hace 5 años y estudió animación y entró a la Universidad de las Américas. Pero también tenemos chicos muy complejos y sabemos que van a ser dependientes toda la vida, tenemos ambos extremos.
A los chicos los preparamos para que tengan flexibilidad. Entonces, cuando los mandamos a los colegios, no les perjudica que les cambien profesores todos los días, no genera esa resistencia a relacionarse con otras personas.
¿Cómo gestionaste Autismo Rancagua? ¿Tienen ayuda estatal?
No, postulamos a proyectos. A veces, los ganamos, otras no. Trabajamos con autogestión, trabajamos todo el año: nos dedicamos a hacer comidas, hacemos rifas, bingos, reciclamos latas. En Chile, se vive de los bingos y de las loterías, porque el estado no se hace cargo. Tenemos un estado ausente, que intenta hacer cosas, pero siempre quedan a medio camino.
Veamos si ahora pasa la Ley de Autismo…
Sí, pero la Ley de Autismo igual tiene dificultades. Nosotros estamos trabajando con el Congreso. Ha sido bien complejo, porque la gente está pidiendo lo mismo que ya está en la Ley de Inclusión. Entonces, vas a saturar una ley que, si no pueden hacerla efectiva, a través de la Ley de Educación, de la compleja modificación que hicieron, quedan en las mismas, porque muchas de las cosas que se están pidiendo ya están dentro de la 20.422, pero la ley no se aplica. Chile tiene esa falencia: donde se crean leyes todos los días y después no las ejecutan. Y vivir del asistencialismo estatal tampoco es bueno, porque la gente se acostumbra a que le den caridad y no dignidad. Eso molesta, una cosa es que se preocupen de mi hijo y cubran sus terapias y que el sistema de salud las cubra, cosa que no ocurre en Chile, porque los autistas no tienen derecho a la salud. Tienes derecho a llevarlo al neurólogo cada 6 meses, le dan pastillas y para la casa. Tú pagas el bono de Fonasa, pero los profesionales hicieron tal negocio que no te atienden por Fonasa. Para los fonoaudiólogos, terapeutas educacionales y neurólogos no es rentable trabajar a través de Fonasa. Entonces, tienes una enorme cantidad de profesionales que no usan Fonasa, porque el sistema es engorroso. A los autistas les dan el tramo A de Fonasa, que no te permite comprar nada. En el servicio público te dan una hora con el fonoaudiólogo una vez al mes, por media hora, que no sirve de nada. El servicio público tiene 3 terapeutas ocupacionales para 8 Cesfam, o sea, tienen 140 horas para una población de 600 chicos con espectro autista, y eso sin contar con que también tienen que atender a chicos que no están en el espectro. Una hora con terapeuta ocupacional cada 3 meses. ¿Eso, de qué te sirve? Ir una vez al mes es una consulta, ir dos veces por semana es una terapia. Los conceptos en Chile están muy errados.
¿Qué servicios prestan en Autismo Rancagua?
Tenemos terapia ocupacional en 4 ramas, fonoaudiología en las tres áreas, psicopedagogía, educación diferencial y proyectos de investigación en matemáticas.
¿Cómo funciona? ¿Se postula o cualquiera puede ir?
Primero, vienen derivados por el neurólogo. Tienen que tener un diagnóstico de un neurólogo y seguimiento. Como nosotros no somos profesionales, necesitamos eso y de ahí le vamos enviando informes al neurólogo. Tenemos atado al neurólogo con el chico, y ellos nos van diciendo si estamos haciendo bien la pega o no. Con los neurólogos, acá en Rancagua, tenemos comunicación constante y vamos enviando los informes cada vez que los chicos tienen control, y nos van diciendo si superamos esa etapa y nos ayudan con hacer los exámenes a través del servicio público, porque son exámenes caros y les pedimos a ellos que los soliciten. La gente espera un año, seis o siete meses, porque son padres que no tienen recursos para hacer esos exámenes.
¿Cómo funciona el pago de los servicios que provee Autismo Rancagua?
Cada papá tiene la obligación de sostener esta casa y tiene que pagar una cuota de 5 mil pesos. Con eso pagamos luz, agua, Internet, alarma y mantención de la casa. Cada papá tiene que venir a hacer aseo una vez al mes, cada noche tienen que sanitizar la casa completa y preocuparse de que esté en óptimas condiciones. Aparte de eso, hay un pago por cada terapeuta. Por cada profesional, aportas 10 mil pesos al mes que te garantiza terapias fijas. Es como si pagaras 2.500 pesos por terapia mensual. Y con eso, nosotros pagamos el impuesto de las boletas que nos generan los profesionales. Porque, lamentablemente, al SII no le importa si tienes o no la plata. Entonces, además, pagamos impuestos. Hasta por el reciclaje, pagamos impuestos. Hoy día estamos cortos de lucas. Conseguimos en dos proyectos 88 millones y necesitamos para funcionar 232 millones. O sea, tenemos la tercera parte de lo que necesitamos. Vamos vendiendo cosas y todas las semanas haciendo cosas.
¿Se han reunido con la gente del nuevo gobierno?
Sí, con todos, pero nada. Todos siembran banderitas de ilusión. Llegan con 300 banderas de ofrecimientos y nada.
El presidente Boric dijo que pondría prioridad a las personas TEA y hasta ahora, ¿han visto algo?
No, incluso le hemos pedido urgencia a la Ley de Autismo, hasta por redes sociales le han pedido que le ponga urgencia al proyecto y ahí está, no sé si están esperando que salgamos a la calle, porque se ha hecho rutina eso. Dentro de lo que hay, se está haciendo lo mejor posible: pedimos unas modificaciones en cuanto a la ley, en cosas que la gente no pone atención. Por ejemplo, que se fije un arancel tarifario, donde el terapeuta que te atiende no exceda un monto. Tienes un fonoaudiólogo que te cobra 20 y después, otro te cobra 45. Si en Chile tienes un crío con autismo, como es mi caso, yo necesito 4 profesionales que salen 100 mil a la semana, o sea, 400 mil al mes, que es el sueldo mínimo. Entonces, la gente tiene que escoger: o come o le da lo que necesita a su hijo. Nosotros atendemos a 127 usuarios y tenemos 480 en lista de espera, que, tal vez, no los vamos a recibir nunca. Los chicos se van da acá cuando ya están bien, relativamente, y después retornan porque te pasaste a la preadolescencia, adolescencia y después joven y nosotros tenemos que hacer el apoyo escolar igual. El mayor nuestro tiene 20 años. Él comenzó con nosotros cuando tenía 10 años. Nosotros atendemos a niños y a adolescentes.
Más que con los políticos, con todos los ministerios. No nos han ayudado, porque siempre está la excusa de que el autismo no tiene políticas públicas. Luego, está el hecho de que funcionamos como agrupación y como fundación y, por ende, te tienes que manejar por las reglas de las dos. Entonces, no estamos libres de impuestos. Aparte de hacerle la pega al estado, le pagamos impuestos. Estamos en Chile y tenemos que adecuarnos a las nulas posibilidades que tiene este país.
Si tú tuvieras plata ilimitada para hacer lo que quieras, ¿qué harías?
Trabajar con los chicos un poco más en educación, en los apoyos escolares y generar una terapia para mucha más gente, porque hoy no tenemos ni el espacio físico ni los recursos. La gente cree que somos sujetos del Estado y nos exigen, y se enojan con nosotros porque no recibimos a sus hijos. Podríamos tener un kinesiólogo, que hace mucha falta y que no tenemos. Eso haría, si tuviera chipe libre: una mejor atención y seguir formando papás coterapeutas. Esa es una de las cosas que hacemos acá: nosotros le enseñamos al papá a trabajar con su hijo. El papá está dentro del aula, una vez al mes con su hijo, se muestran los avances, el chico tiene que tener una hora terapéutica todos los días. Los papás deben mandar los videos y resulta que, por ejemplo, lo hacemos de tal forma, que el papá entra y aprende el manejo de su hijo para que pueda seguir haciéndolo en la casa. Nosotros somos una unidad de apoyo y no le vamos a cambiar la vida a nadie, si no es con la ayuda de los papás. Lo otro es que, si el papá no trabaja, se va. No somos una unidad asistencialista. Si el papá no va a trabajar con su hijo, no nos podemos desgastar trabajando con un chico que no va a tener ningún apoyo en su casa, porque no va a avanzar.
Respecto a eso del asistencialismo. La Teletón ha hecho mucho bien, pero también ha reforzado la idea de la caridad y apelar a la pena de las personas para que donen. ¿Qué crees tú de eso?
La atención que da la Teletón no la va dar nunca el servicio público, jamás. Volvemos a lo mismo: damos una salud mediocre, que no es de calidad. No se hacen cargo. Si se hicieran cargo de la población autista, no hay recursos, no se puede porque hoy día la cantidad de autistas en el mundo ha aumentado de manera exponencial. Tal vez, no es que haya más, sino que se diagnostican más a tiempo y también tenemos sobrediagnóstico después de la pandemia, porque están diagnosticando a personas con Síndrome de Einstein con autismo. Si ese chico nunca le vio la cara a nadie, le faltaba interacción social. Con la mascarilla no aprendieron expresión facial. Quedaron aislados por 2 años. Además, hay mamás exacerbando problemas de sus hijos. Muchas veces vamos al neurólogo con un perfil de Facebook que dice: si tiene esto, esto y esto otro es autista. Los papás van convencidos de ese diagnóstico. Tienes chicos que no hablan, todos con mascarillas. Un niño en la primera infancia aprende del juego simbólico y no lo tiene. Entonces, se les diagnostica erradamente.
¿Qué piensas de la conmemoración del Día del Orgullo Autista?
Autismo Rancagua no conmemora el Día del Orgullo Autista. Yo siempre pongo mucha atención a lo que dice Lucas, que ya va a cumplir 15 años. El Día del Orgullo Autista nos llamaron para participar de un foro, y ellos querían que Lucas dijera que él tenía orgullo de ser autista; Lucas les contestó que él no tiene orgullo de ser autista. Si pudiera pedir un milagro, pediría no tenerlo. Él dice que acepta ser autista, que es otra cosa. Además, los que celebran son los que tienen alto nivel de funcionamiento, que son profesionales, y ahí entramos de nuevo en la segregación. Es decir, los que tienen, según el DMS (instrumento diagnóstico), son los que tienen nivel 1; los que tienen nivel 3, no. Para nosotros no es tema el Día del Orgullo Autista. Nadie puede estar orgulloso, si a alguien le preguntan si aman que su hijo sea autista, sería enfermo decir que sí. No, yo amo a mi hijo porque es mi hijo; no lo amo porque sea autista. Entonces, son conceptos errados y nosotros no le entregamos información errada a la gente. No lo vemos como otras instituciones que hablan de los angelitos de Dios. Eso de los angelitos azules que no mienten; eso no es cierto. Son chicos que no tienen filtro, pero mienten. Eso es estar creando conceptos errados. Esa es una vulneración que cometemos como padres: discapacitamos al niño antes que lo haga la sociedad. Infantilizamos a los niños. Por ejemplo, yo me encuentro con niñas de 10 años que las mamás nunca les han explicado que les va a llegar la regla y acá tenemos una terapeuta educacional que les explica todo sobre sexualidad y los padres se horrorizan. Hablamos de angelitos, de niños, eso de infantilizarlos es una vulneración.
200 comentarios en “La autogestionada labor de Autismo Rancagua”
Mi hijo menor está aún en un diagnóstico con sospecha de alguien trastorno. Feliz de poder tener comunicación con ustedes
Hola muy buenas días como puedo ser parte de esta agrupación lo necesito urgente mi hijo ya es adolescente y lo diasnostigo asen más de un año con autismo nivel 1 y no e tenido como poder tratarlo como familia estamos super solos y sin saber mucho de este diasnostigo el de chiquito fue diasnostigo con discapacidad intelectual leve hasta que llegamos con este diagnóstico esperando que nos puedan ayudar muchas gracias
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