Se nace Asperger. Y no se puede evitar. Es una alteración en el neurodesarrollo de origen no conocido que afecta, básicamente, a la comunicación y a la relación con los otros porque les es difícil interpretar la realidad tal y como lo hace el resto. «Usted entra en esta habitación y en seguida sabe que está en una consulta porque es capaz de poner en relación todos sus elementos. A un Asperger le cuesta hacerlo porque ve las cosas una a una de forma aislada: una mesa, un ordenador, una bata blanca, una camilla, y no los puede relacionar para extraer un significado global», explica Inmaculada Palazón, psicóloga clínica del servicio de Pediatría del Hospital General. Tampoco pueden interpretar el lenguaje gestual. «Algo físico, como un reloj, siempre es lo que es, pero una sonrisa no. Puede mostrar ironía, complicidad, cortesía, burla, y todo ese mundo sutil, interpretativo, les cuesta descifrarlo porque no tienen, como nosotros, el código que les permita hacerlo. No procesan igual la información. No saben interpretar los gestos».
Se caracterizan también por no tener empatía, y esa incapacidad para ponerse en la piel del otro, prever su reacción o anticipar su intención les hace muy inocentes y vulnerables. Junto a ello, son extraordinariamente honrados y sinceros. Dicen siempre lo que piensan porque no se plantean que la verdad pueda molestar u ofender, y esa sinceridad causa problemas a nivel social porque la gente los ve como niños maleducados.
A todo ello se añade, según Palazón, sus problemas con las complejidades y las sutilezas del lenguaje verbal, ya que sólo entienden los significados literales de las frases. Si una madre le dice a su hijo: «No puedes salir solo», él le replicará una y otra vez que sí puede, y tendría razón, porque impedimentos físicos no hay, lo que pasa es que la madre no le deja.
Al contrario de lo que les ocurre con el lenguaje verbal y no verbal, se manejan muy bien con las imágenes y tienen muy buena memoria visual. Por eso, en la etapa infantil, les son muy útiles las agendas compuestas por secuencias de pictogramas con las tareas a realizar en cada momento del día. «Les da mucha tranquilidad organizarse así porque los conceptos temporales abstractos los llevan fatal. Los dibujos les ayudan a saber qué tienen que hacer y a no sentirse perdidos».
Según Inmaculada Palazón, «el Asperger siempre se da en personas con una capacidad intelectual media- alta, y cuando algo les interesa, se dedican a ello con tal intensidad que son muy buenos en lo que hacen». Según los últimos estudios, el grado de prevalencia ha aumentado en los últimos años. Una de cada cien personas presenta este trastorno, una cifra «muy elevada», según la psicóloga.
Un diagnóstico precoz y un programa de atención psicoeducativo específico, son las claves para enseñarles a vivir en un mundo que no pueden interpretar como lo hace la mayoría. Acaban aprendiendo a usar nuestros códigos, aunque sigan siendo extraños para ellos, y su evolución, mayoritariamente, es buena.
La discapacidad invisible
Inmaculada Palazón llama al Asperger «el transtorno oscuro» porque para diagnosticarlo no existen marcadores biológicos que permitan identificarlo mediante pruebas médicas, y la evaluación ha de hacerse valorando las manifestaciones observadas: «Uno de los problemas es la ausencia de diagnóstico. Hay muchos Asperger que no saben que lo son hasta la edad adulta y muchos otros están sin diagnosticar porque los profesionales de los ámbitos médico y educativo tienen un gran desconocimiento sobre el tema. Se quedan con que son raros, consentidos o malcriados».
En este sentido, la etapa escolar es muy importante para, por un lado, detectar posibles casos y, por otro, para saber lo que son y poder ayudarles a evolucionar. «Los colegios son nuestro principal caballo de batalla, junto a la necesidad de que se les conozca y el Asperger deje de ser la discapacidad invisible» asegura Ezkarne Carazo, presidenta de la Asociación Asperger Alicante (ASPALI).
«Todos tienen problemas en el cole. Los profesores no suelen saber nada sobre el tema. Estamos cansados de oír cosas como ‘a tu hijo no le pasa nada’, que están malcriados o son maleducados. En Educación infantil podría ser comprensible, porque podrían confundirse los síntomas con timidez o inmadurez, pero en Primaria cuando un niño tiene Asperger es evidente. Si es que se sabe lo que es, claro», cuenta la presidenta.
Gema Morant, psicóloga de la asociación, añade que, a pesar de la importancia de una detección precoz, «hay pocos profesionales que se atrevan a diagnosticarlo en edades tempranas por el miedo a ponerles etiquetas cuando son muy pequeños. Debería hacerse, pero no se hace».
Acoso escolar
Una de las iniciativas de ASPALI consiste precisamente en acudir a los colegios que lo solicitan para explicar qué es el Asperger y cómo tratar a los niños que lo padecen. «Luchamos por sensibilizar a la comunidad escolar, no sólo a los profesores, sino también a los niños porque la inmensa mayoría de los Asperger padece acoso escolar. No les entienden, los ven raros, y no les respetan».
Junto a la concienciación, la asociación aboga por introducir en los centros adaptaciones metodológicas «que no tienen por qué ser curriculares, ya que pueden asumir los contenidos como los demás, sólo que son más lentos».
Algunas medidas sencillas pero que les ayudaría mucho sería darles más tiempo para hacer los exámenes, o procurar que las preguntas sean claras. «Fallan no porque no sepan la respuesta, sino porque no saben qué se les está preguntando», señala Ezkarne Carazo.
No obstante, la realidad es que no existe un protocolo de actuación en el actual sistema educativo y el grado de intervención depende de la sensibilidad de cada profesor y cada centro escolar.
ASPALI cuenta con 155 asociados en la provincia de Alicante y desarrolla, entre otras iniciativas, una Escuela de Padres, y terapias individuales o grupales con las que intentan suplir las carencias del sistema público. «Nacimos para dar respuesta a una necesidad. Hay familias que vienen muy desesperadas, pero cuando se dan cuenta de que no son los únicos y que les entendemos, todo cambia mucho», añade.
Fuente: lasprovincias.es, en Espaciologopedigo.com
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