Editorial: Autismo Avila
ISBN: 978-84-940322-0-2
Fecha de la edición: 2012
Colección:
Idiomas: Español
Encuadernación: Rústica
Dimensiones: 0 cm x 0 cm
Nº Pág.: 428
Si alguien me pregunta si puedo recomendarle lecturas de libros que les permitan comprender “el pensamiento”, el autismo desde dentro, pienso inmediatamente en los libros de Hilde De Clercq. Ella tiene el talento de explicar aspectos complejos con ejemplos de la vida cotidiana. Aquél que lee los ejemplos deduce la teoría casi automáticamente.
Profesionales de renombre como Rita Jordan y Francesca Happé, y personas con autismo como Temple Grandin y Ros Blackburn se entusiasmaron con el primer libro de Hilde sobre el pensamiento en detalle (o la falta de coherecia central): Mamá, ¿eso es un ser humano o un animal? En él explica lo que es “el pensamiento en detalle” y su rol en el desarrollo de la comunicación verbal y no verbal, la comprensión social y la imaginación.
Al final, deduce las consecuencias educativas, sobre todo la falta de generalización espontánea, y la necesidad de desarrollar programas activos de generalización (lo cual es un aspecto, lamentablemente, bastante descuidado en el autismo). No es por azar que este libro haya sido publicado en tantas lenguas.
En este segundo libro, El autismo desde dentro, desarrolla los aspectos del “pensamiento autista” de forma aún más detallada.
Leemos en la literatura científica que las personas con autismo tienen capacidades muy desarrolladas en todo lo que está ligado con una inteligencia de libro (una inteligencia enciclopédica o la inteligencia de los tests), pero que son relativamente débiles en lo que concierne a una inteligencia sobre el mundo (o tener “sentido común”).
Con bastante frecuencia veo un fenómeno parecido en la relación entre profesionales y padres. Los profesionales sobresalen de cuando en cuando en su conocimiento de libro (el conocimiento científico) y los padres en el conocimiento sobre el mundo (¡el autismo “en vivo”!). Y, por supuesto, uno debería poner las dos formas de inteligencia en conjunto.
Hace dos años tuve una conferencia compartida con Tony Attwood (el autor de tantos libros sobre las personas con síndrome de Asperger) y lo escuché decir algo similar. Un profesional generalmente necesita entre seis y siete años para tener un doctorado en autismo, decía, pero una madre que se ocupa de su hijo con autismo durante seis o siete años merece un doctorado en el conocimiento de su propio hijo.
Lean lo que acabo de escribir ‘como en el eslogan’ de Stephen Shore (persona con autismo): “Si usted ha visto a una persona con autismo, usted ha visto una persona con autismo”, o “cada niño con autismo tiene su propio autismo” y comprenderá que es un error profesional formidable si no se escucha a los padres para entender al niño en su individualidad.
Y ahora ustedes se dirán, pero ¿qué tiene que ver todo esto con la introducción a un libro de Hilde De Clercq? Tiene que ver bastante, porque Hilde es una profesional en autismo desde hace veinte años y madre de un muchacho con autismo durante veinticinco años.
Así, ella reúne las dos formas de sabiduría en el autismo: el autismo en general y la individualización en el autismo y eso se siente durante la lectura. Ella comprende mejor que nadie la aplicación de la comprehensión teórica en todos los aspectos de la vida cotidiana.
Sus dos experiencias (como madre y como profesional) le permiten también escribir un libro que se muestra coherente en su aproximación. Comprende el autismo como profesional y como madre. Su hijo Thomas explica esta importancia de manera admirable. Cuando Hilde había encontrado nuevamente la causa de ciertas dificultades y se le preguntaba cómo era posible que hubiese encontrado una vez más la solución a ese problema, él decía: “Yo lo comprendo, porque mamá es “normal” y autista al mismo tiempo”.
En mi vida como formador he visto que michos profesionales tienen “islas de inteligencia” en su comprensión del autismo (ya lo ven: no son solamente los niños con autismo los que tienen islas de inteligencia). Doy algunos ejemplos. Frecuentemente, los logopedas estudian solamente la comunicación verbal y no verbal en el autismo; los psicólogos, sobre todo las evaluaciones y los programas de educación individualizados, pero sin tener un conocimiento global sobre el autismo. Uno se cree con demasiada facilidad especialista sin haber sido generalista primero. Es como si estos profesionales tuvieran también una “falta de coherencia entral”, como las personas con autismo.
Este libro ofrece la posibilidad de comprender mejor lo que es ser generalista y coherente en el autismo (comprender el autismo en su generalidad). Veo frecuentemente profesionales que vienen directamente a los cursos de formación y muestran cómo se “tratan” “los problemas de comportamiento” pero sin entender el significado de estos problemas en el individuo. Esto muestra una falta de comprensión sobre el autismo desde dentro y entonces también una falta de respeto hacia la persona.
Otro curso que es muy popular es la formación sobre problemas de suxualidad en el autismo: ¿cómo es que uno puede comprender realmente los problemas sexuales sin tener un conocimiento del autismo como generalista, sin comprender el autismo desde dentro?
En este libro, Hilde muestre que un niño con autismo tiene ya dificultades para jugar como los otros niños, que tiene dificultades con la imaginación. Como señala Antonia Fraser: “La fidelidad de un niño a sus juguetes a través de los siglos es una de las grandes historias de amor de la humanidad”. Y al niño que le ha faltado la fundación de este amor tendrá también después, más tarde, dificultades para ir más allá de la percepción y añadir la imaginación, la sopresa de lo romántico en la relación sexual (al menos si se acepta que una relación sexual va más lejos que el acto físico solamente).
Hilde muestra en su libro de forma coherente la relación entre el juego, las emociones, las relaciones y la sexualidad.
Concluyamos con ella que el autismo no es en absoluto “una enfermedad”. El autismo está ligado, sobre todo, a una conceptualización diferente. El objetivo de una educación especializada en autismo no es entonces “la curación”. No se puede “sanar” un procesamiento diferente de la información que es innato. El objetivo de una educación especializada está simbolizado por una imagen que ciertas personas con autismo utilizan: la imagen de un puente entre dos culturas. Es necesario construir puentes entre la persona autista y la cultura neurotípica (la nuestra). Es necesario tratar de vivir juntos de la manera más armoniosa posible, donde cada cultura tenga el derecho a su propia realidad.
El primer paso es la comprensión de la otra “cultura” y este libro nos muestra el camino a seguir.
Sobre la autora:
Hilde De Clercq es lingüista y autora de libros y artúclos sobre el autismo. Es madre de un niño con autismo y anima conferencias y formaciones en Europa sobre temas diversos, como la comunicación, el modo de pensar de las personas con autismo, el Síndrome de Asperger, la colaboración entre padres y profesionales, etc. Ella sucedió a Theo Peeters en la dirección del centro de formación Opleidingscentrum Autisme en Amberes (Bélgica).
Es redactora extranjera de la revista Good Autism Practice, dirigida por Glenys Jones et Hugh Morgan en colaboración con la universidad de Birmingham (UK). Sus méritos en materia de comprensión del autismo le han valido una afiliación al programa de Estado TEACCH (Treatment and Education of Autistic and related Communication handicapped Children), que se encuentra en la Universidad de Carolina del Norte, en Chapel Hill (USA).
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