Síndrome de Asperger

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“Hola Cristina,

A mi medio-hermano le diagnosticaron síndrome de Asperger hace 1 año y medio, aunque nosotros ya lo suponíamos.

Mi hermano tiene 10 años y es un niño normal, salvo que la forma en que percibe su entorno es completamente diferente a la de otro niño de su edad. Os pondré unos ejemplos:

Sus horarios para comer son muy estrictos, él establece que se levanta a las 7h30 para desayunar, comer a las 12h, merendar a las 16h y cenar a las 19h. Ni un minuto antes ni después, todos los días del año. Esto incluye días festivos y también cuando se va a cenar a casa de alguien.

La relación con los demás niños no le interesa, no se relaciona con nadie de su edad salvo su hermana pequeña.

Las relaciones con la familia parecen ficticias, él aprendió a comportarse de manera automática, cuando reconoce una situación, él reacciona según “su libro de respuestas”. Cuando alguien llega a casa se le saluda y se le da un beso (aunque sea la vecina que pide sal).  Cuando una persona llora, se le abraza. Cuando se le hace un regalo, aunque ya sepa lo que es, se sorprende y se ilusiona. La única persona con la que consigue empatizar es con su mamá.

Las bromas y mentiras, son parte de un cotidiano complicado. No llega a entender las bromas ya que no reconoce la ironía. Por el mismo motivo, no discierne entre verdad y mentira, todo lo que le dicen es verdad absoluta.

En cambio, tiene muchísimo talento e imaginación. Le encanta la anatomía y el cine. Su curiosidad por la ciencia hace que pase horas leyendo, dibujando y experimentando.

Con 8 años, fuimos al parque acuático, donde había una enorme ballena con un tobogán. Tuvimos que esperar 15 minutos a que saliera de la ballena. Cuando le preguntamos si se había divertido, nos dijo que la ballena estaba mal hecha, le faltaban los riñones que los había estado buscando!

Y una se pregunta, que pasa cuando algo no sale como es previsto o no entiende lo que ocurre a su alrededor, pues tiende a auto-lesionarse y se angustia exageradamente.

Esta semana nos vimos en una situación complicada, por eso acudo a ti, para ver que me puedes recomendar.

Nico, que es como se llama, no sabe que Papa Noel no existe y como todos los años, antes de navidad le escribe una carta junto con su hermana de 6 años.

En ella le pide montones de juguetes y deseos, algunos difíciles de cumplir para sus padres, como un osito gigante de golosina que ocupe toda su cama!

Dado su sensibilidad, a la mamá le preocupa decírselo ya que prevee una reacción abrumadora y dura para Nico, a pesar de ser consciente que debe aprenderlo y quiere que sean los papás que se lo cuenten, y no terceros.

Ha contemplado la idea de la carta, que publicaste hace unos días, pero aun así el miedo a hacerle daño a su hijo, le bloquea. ¿Cómo le recomiendas enfrentar esta situación?

Un saludo,

O.C.”

Antes de daros mi consejo a vuestro caso, voy a explicar para todas aquellas personas que no sepan de qué va este síndrome, qué es y en qué consiste.

El Síndrome de Asperger hasta no hace demasiado tiempo se incluía en el autismo. A día de hoy se sabe que existen diferencias entre ambas cosas, pero este se considera un subtipo del autismo. A los niños con este síndrome se les suele llamar “autistas de alto rendimiento” .

Una diferencia básica y muy importante es que estos niños tienen un futuro mucho más prometedor que los niños autistas, ya que pueden llegar a ser adultos completamente normales.

Como podéis ver en lo que nos comenta O.C., Nico es un niño al que le apasiona la ciencia, por lo que es evidente que puede llegar a convertirse no sólo en un científico, sino que además “gracias” a su enfermedad a uno de los mejores.

Muchos de los niños que sufren este síndrome tienen un alto coeficiente intelectual.

A diferencia con el autismo es más difícil detectarlo pronto, ya que los síntomas aparecen entre lo 2 y los 7 años.

Algunas características de este síndrome son:

  • dificultad en las relaciones sociales
  • tienen pocos  intereses pero estos son obsesivos
  • torpeza motora
  • usan un lenguaje demasiado cultivado para su edad
  • no son nada empáticos
  • se altera facilmente ante cambios en sus rutinas
  • tienen reacciones desmesuradas
  • son muy sensibles a sonidos y luces fuertes

Quiero que entendáis que en este tipo de síndromes cada caso es único, todos pueden tener algunas cosas en común, pero cada niño tiene sus peculiaridades y nadie mejor que vosotros conocéis a vuestro niño.

Por lo que cuentas de Nico, entiendo que la situación es difícil. Lo primero de todo es valorar las posibilidades que tiene de enterarse por otros medios. Es decir, si es un niño que apenas tiene relación con otros niños de su edad o de edades próximas a la suya, quizá podríamos esperar a contárselo cuando llegue el momento de decírselo a su hermana, de manera que pueda apoyarse en ella si es que tienen una buena relación de confianza. Para mi esta sería la mejor opción.

El peligro de contarselo a Nico y no a la pequeña de la casa, es que si este tiene una reacción desmesurada, la pequeña va a acabar enterándose, y esto puede suponer un drama familiar aún mayor.

De todas las maneras, sinceramente creo que en vuestro caso lo mejor que podéis hacer es algo parecido a la carta, pero personalizarlo para él. Como os digo, nadie mejor que vosotros que sois su familia sabéis lo que vuestro pequeño necesita. Escribid una carta que le llegue al corazón, algo que el sienta como real. Y si queréis en este caso podemos añadir que él tendrá que hacer lo mismo algún día con sus hijos.

Así que yo les daría la carta a ambos en un par de años que la pequeña ya sea un poquito mayor.

Lo más importante es que vosotros estéis seguros de lo que vais a hacer y preparados para cualquier reacción, que como sabéis puede ser desmesurada.

Para acabar quiero decirle a la madre de Nico, que cuente conmigo para todo lo que necesite. Sé lo sola e incluso agobiada que te tienes que sentir en ciertas ocasiones, y no es fácil hablar del tema con otras madres cuyos hijos son “perfectos”. No dudes en ponerte en contacto conmigo cuando necesites consejo sobre cualquier tema, para Nico, para su hermana, o por supuesto para ti misma, que como madre tienes un duro trabajo a diario.

Espero haberos sido de ayuda tanto a ti mamá, como a O. C.

 

 

 

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1.153 comentarios en “Síndrome de Asperger

  1. Hola soy la mamà de Nicolas. Primero que todo muchisimas gracias por el tiempo y los preciosos consejos, Ophelie yo no hubiera podido describir mejor que tu a Nicolas pues eres mucho mas objetiva que yo logicamente.
    Cristina, todos los puntos que enumeras por el sindrome de Asperger describen perfectamente a mi niño, y por el momento él dice que sera un gran cientifico también.
    Efectivamente, ando un poco preocupada por el hecho de como contarle que Papa Noel no existe sin causarle un gran dolor, sobre todo que ha puesto todas sus esperanzas en que solo El puede traerle un gran oso en azucar que quiere compartir con todos sus amigos y la familia, yo he intentado disuadirlo diciéndole que quizas Papa Noel no lo traiga porque le va a ser muy dificil encontrar uno, pero eso no lo escucha y sigue esperandolo impacientemente. A veces me digo que lo mejor es decirle la verdad pero efectivamente lo mejor seria esperar un año mas que su hermana esté un poco mas grande, y como tu dices, ella podrà explicàrselo màs facilmente que nosotros. Lo de la carta me parece un poco delicado pues curiosamente creo que le serà dificil creerlo.
    En todo caso, gracias de nuevo por tu valiosa ayuda y con mucho gusto seguimos en contacto, todavia no he tenido tiempo de mirar tu blog, pero parece super interesante, asi que lo haré seguro. Hasta muy pronto,
    Liliana
    Perdon por los errores de ortografia pero no tengo corrector

    1. Hola Liliana!
      Me alegra mucho que te hayas animado a escribir.
      Con respecto al oso de gominola gigante, creo que una buena opción es que Papá Noël le deje una carta a Nico explicandole que no se lo ha podido traer por que era muy pesado, o por que no quedaban, o por que no se fabrican… o por cualquier otra razón que creas le va a convencer.
      Es el mejor modo de evitar una gran decepción. Además puedes aprovechar esta carta para animarle a hacer cosas que a lo mejor no hace y te gustaría, o para hacerle llegar algún mensaje más ya que, gracias al poder de Papá Noël, es posible que de esta manera haga más caso.
      Por el resto, como te digo, no dudes en consultarme cualquier cosa que necesites, para eso estoy aquí.
      Un saludo y espero saber cómo pasa vuestra Navidad.

      1. Hola Cristina,
        Si tienes razon, la carta de Papa Noel es la mejor opcion, le diré que buscò en todos los paises del mundo pero que no logrò encontrar un oso asi de grande, y aprovecharé para pedirle que trabaje bien en la escuela, que es muy importante para su futuro. Aunque te cuento que en este momento lo que le interesan son los robots bionicles, pues quizo construir uno pero como no lo logrò me andaba pidiendo plàstico y tornillos para hacerlo mas real, entonces yo le ofreci uno pequeño por la San Nicolas, otro por los buenos resultados en la escuela, y este domingo fue a comprar uno con 20 euros que le ofrecieron también. Yo le digo que ya es suficiente pero ahora quiere toda la coleccion, no sé cuanto le va a durar esta obsesiòn pero lo que sé es que serà hasta tener otra porque siempre ha sido asì, pasa muy rapido de una cosa a la otra.
        De la navidad te cuento que es un poco duro porque mi familia esta muy lejos, pero con mis niños y mi esposo me ocupo mucho y como solo hay 15 dias de vacaciones se pasan rapido y con los proyectos del año nuevo logro pensar en otras cosas.
        En todo caso me encanta participar en tu blog e intentaré mirar los otros temas, aunque ya vi una foto de tu bebé està precioso. Un saludo para tu linda familia.
        Liliana

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  31. Sorry for the huge review, but I’m really loving the new Zune, and hope this, as well as the excellent reviews some other people have written, will help you decide if it’s the right choice for you.

  32. If you’re still on the fence: grab your favorite earphones, head down to a Best Buy and ask to plug them into a Zune then an iPod and see which one sounds better to you, and which interface makes you smile more. Then you’ll know which is right for you.

  33. Apple now has Rhapsody as an app, which is a great start, but it is currently hampered by the inability to store locally on your iPod, and has a dismal 64kbps bit rate. If this changes, then it will somewhat negate this advantage for the Zune, but the 10 songs per month will still be a big plus in Zune Pass’ favor.

  34. Apple now has Rhapsody as an app, which is a great start, but it is currently hampered by the inability to store locally on your iPod, and has a dismal 64kbps bit rate. If this changes, then it will somewhat negate this advantage for the Zune, but the 10 songs per month will still be a big plus in Zune Pass’ favor.

  35. The Zune concentrates on being a Portable Media Player. Not a web browser. Not a game machine. Maybe in the future it’ll do even better in those areas, but for now it’s a fantastic way to organize and listen to your music and videos, and is without peer in that regard. The iPod’s strengths are its web browsing and apps. If those sound more compelling, perhaps it is your best choice.

  36. Zune and iPod: Most people compare the Zune to the Touch, but after seeing how slim and surprisingly small and light it is, I consider it to be a rather unique hybrid that combines qualities of both the Touch and the Nano. It’s very colorful and lovely OLED screen is slightly smaller than the touch screen, but the player itself feels quite a bit smaller and lighter. It weighs about 2/3 as much, and is noticeably smaller in width and height, while being just a hair thicker.

  37. This is getting a bit more subjective, but I much prefer the Zune Marketplace. The interface is colorful, has more flair, and some cool features like ‘Mixview’ that let you quickly see related albums, songs, or other users related to what you’re listening to. Clicking on one of those will center on that item, and another set of “neighbors” will come into view, allowing you to navigate around exploring by similar artists, songs, or users. Speaking of users, the Zune “Social” is also great fun, letting you find others with shared tastes and becoming friends with them. You then can listen to a playlist created based on an amalgamation of what all your friends are listening to, which is also enjoyable. Those concerned with privacy will be relieved to know you can prevent the public from seeing your personal listening habits if you so choose.

  38. Sorry for the huge review, but I’m really loving the new Zune, and hope this, as well as the excellent reviews some other people have written, will help you decide if it’s the right choice for you.

  39. This is getting a bit more subjective, but I much prefer the Zune Marketplace. The interface is colorful, has more flair, and some cool features like ‘Mixview’ that let you quickly see related albums, songs, or other users related to what you’re listening to. Clicking on one of those will center on that item, and another set of “neighbors” will come into view, allowing you to navigate around exploring by similar artists, songs, or users. Speaking of users, the Zune “Social” is also great fun, letting you find others with shared tastes and becoming friends with them. You then can listen to a playlist created based on an amalgamation of what all your friends are listening to, which is also enjoyable. Those concerned with privacy will be relieved to know you can prevent the public from seeing your personal listening habits if you so choose.

  40. Hands down, Apple’s app store wins by a mile. It’s a huge selection of all sorts of apps vs a rather sad selection of a handful for Zune. Microsoft has plans, especially in the realm of games, but I’m not sure I’d want to bet on the future if this aspect is important to you. The iPod is a much better choice in that case.

  41. Between me and my husband we’ve owned more MP3 players over the years than I can count, including Sansas, iRivers, iPods (classic & touch), the Ibiza Rhapsody, etc. But, the last few years I’ve settled down to one line of players. Why? Because I was happy to discover how well-designed and fun to use the underappreciated (and widely mocked) Zunes are.

  42. The Zune concentrates on being a Portable Media Player. Not a web browser. Not a game machine. Maybe in the future it’ll do even better in those areas, but for now it’s a fantastic way to organize and listen to your music and videos, and is without peer in that regard. The iPod’s strengths are its web browsing and apps. If those sound more compelling, perhaps it is your best choice.

  43. I’ll gear this review to 2 types of people: current Zune owners who are considering an upgrade, and people trying to decide between a Zune and an iPod. (There are other players worth considering out there, like the Sony Walkman X, but I hope this gives you enough info to make an informed decision of the Zune vs players other than the iPod line as well.)

  44. Between me and my husband we’ve owned more MP3 players over the years than I can count, including Sansas, iRivers, iPods (classic & touch), the Ibiza Rhapsody, etc. But, the last few years I’ve settled down to one line of players. Why? Because I was happy to discover how well-designed and fun to use the underappreciated (and widely mocked) Zunes are.

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