ENTREVISTA A MERCEDES BELINCHON por INFOCOP
| Mercedes Belinchón: Desde finales de los pasados años 70 y, gracias a los estudios que realizaron, sobre todo, Lorna Wing y sus colegas en el Reino Unido, comenzaron a reconocerse básicamente dos hechos: 1) que las alteraciones de la comunicación, la relación y la imaginación que definen el autismo (y que desde entonces se conocen como «tríada de Wing») se dan con niveles muy variables de severidad y se manifiestan clínicamente en formas muy diversas, y 2) que, por tanto, la etiqueta «autismo», no identifica tanto una condición clínica homogénea, con síntomas y perfiles de funcionamiento idénticos en todos los afectados, sino un conjunto de condiciones que comparten la alteración cualitativa muy temprana en el desarrollo de la tríada de funciones antes mencionada, pero que implican conductas, capacidades, dificultades y necesidades cuantitativamente muy diversas entre sí. |
Las nociones de «espectro» y «continuo autista», que en los últimos años se usan como sinónimas de «autismo», reflejan precisamente esa diversidad de personas y condiciones. Por ejemplo, las personas más gravemente afectadas y con discapacidad intelectual asociada muestran una incapacidad muy profunda para establecer relaciones sociales significativas, dificultades muy importantes para la comunicación verbal y no verbal, y un patrón de comportamiento extremadamente inflexible, repetitivo y estereotipado que les hace requerir apoyos muy amplios y continuados durante toda su vida. En el otro extremo del «espectro» o del «continuo», las personas con trastorno o síndrome de Asperger suelen mostrar interés y motivación por establecer relaciones sociales (aunque tienen muchas limitaciones para aprender por sí mismos las sutiles y complejas reglas que rigen la vida social); tienen buenas capacidades lingüísticas y cognitivas e incluso habilidades especiales para ciertas tareas, y una inflexibilidad más cognitiva que propiamente conductual, que se refleja, sobre todo, en intereses y temas de conversación muy restringidos, que pueden llegar a obsesionarles pero que no les impiden realizar las actividades esperables a su edad en sus entornos habituales e incluso alcanzar buenos logros académicos, profesionales o artísticos.
Vemos entonces que las personas con síndrome de Asperger tienen el mismo tipo de limitaciones sociales, comunicativas y de imaginación que las personas con otras formas de autismo, y que necesitan apoyos cualitativamente similares a los de éstas en los ámbitos educativo, laboral, familiar y comunitario; sin embargo, el grado o severidad de su afectación se puede considerar como menor y por ello los apoyos necesarios tendrán menor intensidad y duración o serán distintos. Aparentemente, las personas con trastorno de Asperger o «autismo de alto funcionamiento» se parecen muy poco al estereotipo, que por desgracia prevalece todavía hoy, que identifica el «autismo» con personas con gran aislamiento social, muy grave discapacidad intelectual, estereotipias, risas o rabietas sin control, y déficit y conductas desafiantes. Sin embargo, si analizamos en profundidad tanto la naturaleza de los problemas como la de las estrategias y recursos de intervención que resultan eficaces en los distintos casos, encontramos elementos muy comunes, y por ello se justifica su inclusión conjunta bajo un mismo paraguas o rótulo conceptual.
¿Hablar ahora de «trastornos del espectro autista» implica algo más que una moda o un simple cambio de denominación? A mí me parece que sí. Reconocer que el autismo se puede expresar clínicamente en formas de severidad muy variable permite superar estereotipos erróneos sobre cómo son o qué necesitan las personas afectadas, y tiene infinidad de consecuencias tanto a nivel teórico como profesional, aunque a veces éstas sean problemáticas. Por ejemplo, para los profesionales clínicos, las tareas diagnósticas se han vuelto, por así decirlo, más complejas. Primero, porque los manuales que hoy sirven como referencia internacional para el diagnóstico en el ámbito de la salud mental, como el DSM-IV TR y el CIE-10, están organizados en categorías, lo que, de entrada, choca con la propia definición «dimensional» del autismo (en estos manuales, además, los trastornos del espectro autista forman parte de una categoría más amplia, la de los «trastornos generalizados del desarrollo» –TGD-, que incluye también un trastorno infantil neurodegenerativo como el síndrome de Rett, que tiene una etiología genética específica). Y segundo, y más importante aún, porque las categorías y criterios tanto de inclusión como de exclusión que ofrecen estos dos manuales resultan insuficientes y poco operativas como guía para el diagnóstico diferencial de muchos casos clínicamente «limítrofes», tanto dentro de la propia categoría TGD (entre las opciones de «trastorno autista», «trastorno de Asperger» y «trastorno generalizados del desarrollo no especificado»), como respecto a otras categorías clínicas (como el retraso mental, en el extremo más grave del continuo, y ciertos trastornos de personalidad, en el extremo más leve).
El diagnóstico clínico y diferencial del autismo exige hoy en día una formación muy precisa y especializada que muy pocos profesionales poseen todavía en nuestro país, y por ello ocurre que la demanda de diagnósticos está aumentando de manera extraordinaria, pero la tasa de diagnósticos erróneos y la falta de concordancia de los diagnósticos emitidos por los distintos profesionales y servicios es todavía muy alta, generándose con todo ello una confusión considerable.
Por otro lado, sin embargo, creo que para los profesionales del ámbito educativo y social, para las propias personas y familias afectadas, para las administraciones, los medios de comunicación y la sociedad en general, la popularización del concepto «trastornos del espectro autista» está teniendo consecuencias positivas.
Primero, porque pone al descubierto más claramente la lógica funcional que subyace a los diversos síntomas y variantes clínicas del autismo, y facilita que se entiendan mejor las dificultades, las necesidades y las posibilidades de las personas con estos trastornos, y también que se detecten y reconozcan antes.
Segundo, y consecuencia directa de lo anterior, porque al comprenderse mejor lo que significa que a alguien se le diagnostique un trastorno del espectro autista se están pudiendo articular y ajustar mejor las respuestas y los servicios (terapéuticos, educativos, sociales) que se ofrecen a estas personas y sus familiares.
Y tercero, y en mi opinión fundamental, porque todo lo anterior está favoreciendo una visión cada vez más integral y menos «medicalizada» sobre el autismo, que permite abordarlo como una situación y un reto que concierne al conjunto de la sociedad (y a profesionales y científicos de muy diversas especialidades), y no sólo como un trastorno o patología que concierne únicamente a los profesionales de la salud mental.
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