Entrevista a Magdalena Capó

Conociendo más de cerca el Síndrome de Williams y su relación con la música

Conocemos las bondades de la música con las personas con Síndrome de Williams, de la mano de una de sus mejores conocedoras, Magdalena Capó, investigadora en lingüista clínica y musicoterapeuta de la Asociación de Síndrome de Williams España (ASWE) y en el centro Musicaycolor.

¿Quién es Magdalena Capó?

Magdalena capó es por un lado investigadora en Lingüística Clínica en la Universidad Autónoma de Madrid, llevando a cabo artículos de investigación y la tesis doctoral en aspectos comunicativos y lingüísticos en dos enfermedades raras, y por otro lado, es musicoterapeuta en la Asociación de Síndrome de Williams España y en Musicaycolor.

¿Qué es el Síndrome de Williams-Beuren?

Es un trastorno del desarrollo, causado por una microdeleción en la banda cromosómica 7q11.23 . Hay una serie de problemas metabólicos, intestinales y cardiacos asociados, siendo la estenosis aórtica supravalvular (estrechamiento de la aorta) el más frecuente. De hecho, fueron el cardiólogo Williams y el pediatra Beuren quienes en los años 50 encontraron casos de pacientes con cardiopatías, discapacidad intelectual y apariencia física similar entre ellos, y a partir de ahí se fueron desarrollando investigaciones hasta llegar en 1993 (Ewart et al.) a la causa molecular (genética). En cuanto al desarrollo, se ha venido diciendo que estas personas tienen un perfil neurocognitivo clásico que se ha descrito como “de picos y valles”, es decir, aspectos poco afectados (destrezas relativas como su sociabilidad, afabilidad, lenguaje…) y aspectos más deficitarios (dificultades visoespaciales, discapacidad intelectual entre leve y moderada, dificultades de atención, dificultades en motricidad fina, etc.). Entre lo que se ha considerado un punto fuerte del síndrome ha sido el lenguaje, pues tradicionalmente se consideraba que estas personas tenían destrezas lingüísticas muy buenas que no estaban a la par y sobrepasaban su nivel cognitivo. Fue Úrsula Belugi, psicóloga americana, quien concluyó que las personas con Síndrome de Williams eran bastante excepcionales a nivel lingüístico y a partir de eso, el interés por el síndrome creció, lo cual fue positivo. Sin embargo, posteriores investigaciones han demostrado que presentan bastantes dificultades en el lenguaje, sobre todo en el uso social del mismo y en la comprensión. Este síndrome tiene una incidencia de 1 por cada 20000 recién nacidos, si bien desde el año 2002 se maneja la cifra de 1 por cada 7500 nacidos (Stromme et al., 2002). Algo a tener en cuenta es que cada vez los diagnósticos son más tempranos, por lo que es muy importante la labor de difusión para que las familias puedan disponer de un diagnóstico y puedan empezar a buscar apoyos.

¿Cuál es la relación de este síndrome con la música?

Si bien no está clara la relación entre la hiperacusia asociada al síndrome y la música, autores como Bloomberg (2006) y Levitin (2004), han intentado relacionar estos aspectos. La hiperacusia tiene que ver con el nivel de procesamiento (subjetivo) de los sonidos, lo que significa que a veces los sonidos que a algunos nos resultan fuertes y repentinos y por tanto desagradables (como fuegos artificiales, petardos…), y a ellos les producen un rechazo inicial (se tapan los oídos), y sin embargo a algunos de ellos, les causan mucho interés en ocasiones, y en otras, en cambio, llegan a desarrollar fobias y miedos asociados a los escenarios en los que se producen esos sonidos.

Cuentan, por otro lado, con una especial sensibilidad, una sensibilidad como quizá puede darse en personas con Trastorno del Espectro Autista, razón por la cual, la Música les provoca y les mueve, quizá mucho más que a otras personas con mayor autocontrol emocional. Melódicamente son bastante buenos, ya que de forma intuitiva son capaces de reproducir melodías porque les prestan una especial atención (y que también se ha relacionado con el oído absoluto). Sin embargo a nivel rítmico, tienen muchas dificultades en adaptarse a los ritmos propuestos, sobre todo si son rápidos, y tienen dificultades para mantenerlos durante un tiempo prolongado. Es cierto que hay algunos casos que sí tienen unas buenas habilidades rítmicas, concretamente tenemos dos en mente, pero hasta el momento nos hemos encontrado con casos contados.

A nivel de producción musical son bastante creativos. Y su falta de inhibición va en pro de poder expresarse musicalmente, algo que en la música juega a su favor. Incluso algunos músicos profesionales tienen dificultades cuando van a dar un concierto (pánico escénico), y sin embargo ellos están encantados de subir a un escenario. Puede haber algunas personas que no muestren un interés tan fuerte por la música, pero por lo general, para esta esta población, la música pasa a ser un estímulo muy potente con el que trabajar otros aspectos, o bien una opción de ocio y con ello, aumentar la autoestima y fomentar la socialización.

Mgdalena Capó en una sesión de musicoterapia de la Asociación Síndrome de Williams de España – ASWE
Mgdalena Capó en una sesión de musicoterapia de la Asociación Síndrome de Williams de España – ASWE

¿Qué objetivos terapéuticos se plantea la musicoterapia con las personas con Síndrome de Williams?

Cuando el estímulo musical está presente, su atención y motivación se consiguen más fácilmente. El estímulo les interesa en sí mismo, por lo que a partir de ahí se pueden trabajar muchas cosas. Los niños están encantados, es una terapia que disfrutan muchísimo y tienen la sensación de que no están trabajando.

En concreto, con niños, se trabajarían aspectos comunicativos, motores, emocionales y cognitivos. Como en otros trastornos del desarrollo, en niños con Síndrome de Williams los hitos motores y lingüísticos se adquieren con retraso, sobre todo el lenguaje.

Se trabaja mucho la mirada, que estén orientados hacia el otro para comunicar, el control de los tiempos en la comunicación (respetar el turno, escuchar, tener una conversación coherente, etc.). También se trabajan la motricidad gruesa y fina. En el caso de los bebés se trabaja estimulando musicalmente, por ejemplo sonorizando, o bien que alcance el instrumento, para iniciar y fomentar el gateo, o para el que el niño realice volteos hacia un lado o hacia otro… o para el lenguaje, para que que empiecen con los sonidos, el balbuceo, y las primeras palabras, musicalizando los sonidos del lenguaje, siempre estimulando y ofreciendo los apoyos necesarios para que vayan consiguiendo los hitos evolutivos. El trabajo emocional a través de la música también está presente desde bien pequeñitos. Pues es habitual encontrar que se ponen, de repente, a llorar desconsoladamente ante nanas, o ciertas canciones cuando hay un cambio a tonalidades menores, etc. y a partir de lo que la música provoca en ellos, y poco a poco, exponiéndoles progresivamente a algunos de esos elementos musicales y ayudándoles a verbalizar esas emociones (“me pone triste”), van gestionando y aprendiendo a regularse y a experimentar esas emociones.

Con adolescentes y adultos, el trabajo a través de lo musical tiene mucha importancia, puesto que a medida que nos hacemos adultos, las posibilidades de socialización se ven limitadas, y mucho más si hablamos de personas con alguna discapacidad o dificultades de integración en ciertos contextos sociales. Se trabaja mucho la ansiedad, las fobias, la irritabilidad, la frustración ante situaciones que no comprenden muy bien, o situaciones derivadas de complacer a los demás, o casos de depresión porque ven que sus posibilidades laborales o su socialización son escasas, etc. Si se incluyen en las sesiones objetivos de aprendizaje musical, eso supone además, una vía de ocio y de integración social muy buena para ellos, como ya hemos comentado.

¿Es la música una vía adecuada para el aprendizaje de la comunicación? ¿Por qué?

Desde luego. Hay muchos aspectos comunes a la comunicación musical y a la comunicación mediante el lenguaje. En la comunicación musical algunos aspectos quizá se hacen más evidentes que en la comunicación diaria, donde pasan desapercibidos. Por ejemplo, estamos más acostumbrados a permitir un cierto grado de solapamiento cuando dos personas hablan a la vez en una conversación, sobre todo los españoles (risas), produciendo inhibiciones y adaptaciones constantes al otro. Musicalmente, al tocar con otra persona, existen unos tiempos medidos y pautados, con unas reglas más estrictas. En ese sentido, si entras antes o interrumpes al otro o no es tu turno, se nota muchísimo más.

Además comunicativamente con la música, no solo construyes cosas sino que compartes un contenido emocional: es otra vía que quizá en la conversación podemos percibir pero no tan claramente como en la música. Al cantar, ciertos aspectos del habla (entonación o prosodia, volumen de la voz, etc.) adquieren una mayor importancia. De alguna manera toda esa información se transmite de una manera más energética que en la comunicación verbal. En concreto, aspectos que se pueden trabajar son la organización en la comunicación (turnos, finales…), la estructuración del lenguaje, la utilización de partículas funcionales…

¿Las familias acceden fácilmente a este tipo de terapia?

No siempre. Sin embargo, en el síndrome de Williams se oye cada vez más la recomendación de la musicoterapia por parte de otros profesionales. Por otro lado, no todas las familias a las que se les da un diagnóstico, acuden a las asociaciones. O hay familias que aunque han acudido a la Asociación, no se plantean la musicoterapia como una opción, puesto que hay que tener en cuenta muchas cosas y tomar muchas decisiones. En muchos casos afecta el lugar en el que viven las familias y los recursos e informaciones que puedan ofrecer también las distintas Asociaciones territoriales de Síndrome de Williams. Iniciativas como la organización de congresos sobre Síndrome de Williams a nivel nacional, o sobre Musicoterapia y Síndrome de Williams, como el celebrado hace un año por la Asociación Síndrome de Williams de Cantabria, son muy enriquecedoras en este aspecto porque ponen en contacto a profesionales, y a familias de toda España. A raíz de ese congreso, seguimos en contacto, por ejemplo, con musicoterapeutas que trabajan con niños con Síndrome de Williams en Barcelona, en Cantabria… Pero el poder acudir a una terapia de manera continuada, depende de muchos factores como el nivel adquisitivo, la posibilidad de desplazarse, etc. Pero en general las familias acuden cada vez más a la Musicoterapia, porque las mejoras son claras.

Por otro lado, algunas familias piensan en la música como una posible vía profesional para sus hijos. Y me gustaría, a este respecto, decir que no es nada fácil poder vivir profesionalmente de la música. Sin embargo, el poder aprender a tocar un instrumento o cantar es una experiencia que creo que no debería dejar pasar nadie. En este sentido, ASWE empieza a atender las consultas de profesores de Conservatorios de Música que están interesados en asesorarse sobre estrategias pedagógicas con estas personas, cómo presentarles el pentagrama, cómo es la mejor manera de enseñar la lectura musical, el seguimiento del ritmo, adaptación de la técnica del instrumento, etc. pero aún queda mucho camino por recorrer en este sentido.

¿Existen publicaciones derivadas de vuestro trabajo musical con población con Síndrome de Williams? ¿Otra población?

Las publicaciones en revistas científicas sobre Musicoterapia y Síndrome de Williams las hemos orientado hacia los objetivos, su estimulación y adquisición de hitos. En las revistas de la ASWE se puede encontrar algún artículo general. Existe mucha bibliografía sobre el Síndrome de Williams-Beuren, en relación con la música, y sobre otros muchos aspectos, sobre todo en inglés.

Magdalena Capó trabaja en Asociación de Síndrome de Williams España y en Musicaycolor

Sigue a Magdalena Capó en http://uam.academia.edu/MagdalenaCapo

Ponencia de Magdalena Capó en el Congreso Síndrome Williams, Santander 13.10.2012 – Video 16 de 23 – Mesa 2E.

 

Artículo Intervención en Síndrome de Williams desde la Musicoterapia. Magdalena Capó en la Revista de la Asociación de Síndrome de Williams España (ASWE), número 12 (Enero 2013) pag 40.

Consulta los demás números de la revista de la Asociación de Síndrome de Williams España (ASWE)

Programa dedicado al Síndrome de Williams. Para Todos (La 2).

Gloria Lenhoff, soprano con Síndrome de Williams.

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