Friday, 01 April 2011

  • Trapped in their own body




    Low functioning (severe) individuals with Autism are often referred to as being trapped in their own world or being in a body that simply doesn’t work the way it should. There is a new movie (Wretches & Jabberers) coming out that I think will illustrate this concept beautifully.

    Most recently, there was a news article referring to how Autistics really do understand you even if they can not speak and you do not get a response. Honestly, Carly Fleischmann probably is the best example of this to date… a young girl that was unable to speak for most of her life until she approached a computer keyboard and began to type out full, coherent sentences.

    There is a lot going on here that I think a lot of different people easily forget. Here is how I see the forgetting being broken down:

    1. Parents of children that have Autism yet are still higher functioning, or even with Aspergers, often forget that other parents have children that hurt themselves, others, have yet to be toilet trained or even speak.
    2. Individuals with Autism/Aspergers see it as a gift as well as a curse, sometimes simply as a gift.. I’ve even seen some go so far as to think they’re superior from everyone else. To these people, many times, they see no reason to do anything at all except welcome the gift for what it is. This can make some parents quite upset when their children are so bad off that they see it as nothing but a curse.
    3. Parents of the low functioning children sometimes forget that their children is likely very aware of what they say and do around them. Often talking to others as if they’re not there, when they are… getting upset at them for something beyond their control, for saying hurtful things out of frustration… they forget that they wouldn’t say these things if their child was listening… they are listening.

    There are a couple of key points to all of this that I think are often missed as well, not on purpose and certainly not at all times… but from time to time, we let it slip out of our memories and thoughts.

    As difficult as it is to have a special needs child, it is still just as hard or even harder to be that child.

    We often get wrapped up in the stress that we forget our child is even a human being.. not literally, but figuratively. We forget their thoughts, emotions and own frustrations are in there… we don’t see it or hear it, but they’re there. They’re in a prison right there beside you and they can’t get out. You think you have it hard that they won’t give you a hug? Imagine how hard it is that they so wish they could… but can’t.

    There could be brilliance struggling to get out.

    I often say “No matter how severe, never underestimate a person with Autism. There could be brilliance struggling to get out.” I was corrected that I should say “is” as opposed to “could be” but again, we have to be realistic… not every person with Autism is brilliant. They are certainly wonderful, beautiful people with unlimited potential… but not everyone is brilliant, Autism or not.

    But in the very least, there is an average person in there… brilliant or not, they’re amazing in their own right. Don’t expect there to be the next Einstein or Mozart in there that you have to release… they’re probably not. But they are still your children.. your perfect children.

    And they don’t need the pressure of greatness pressed on them. They simply need to just be. They simply need to have your acceptance, your understanding and most of all, for you to never forget who they are. They’re in there.

    This is where I feel there needs to be a cure.

    Not necessarily a way to strip away Autism or even prevent it, but for right now, we need a cure to break the shell.. to let these children (and adults too!!) be able to not only speak but express emotions, function properly and become independent.

    I don’t care what vaccines might do, or what living close to a highway may cause… all of those studies talk about risk. As in, percentage points. None of those studies mean that you do X and you’ll have a 0% chance of having a child with Autism. And until that does come to be, we need to be focusing on getting those low functioning individuals talking.

    Cure the curse, leave the gift.

     

Comments (3)

  • anonymous

    this website is very good,you can go and see it




    http://www.shoes4world.com/

  • starcrossedloversdivine@xanga

    This is always the first, and most difficult, concept to teach a staff member new to the severe population.   Talking about a person in front of them is a serious ethics violation. There have been so many times when placing a demand on a person I work with, they look at you like they don't understand, but you know it's just inability or even just noncompliance. Sometimes self-injury gets in the way, often because it has been used as an escape from the demand (even when it's as simple as saying "hi" or pointing to a picture in a communication book). I'm glad that this was posted, because sometimes people just assume because of what their "IQ" reading or a diagnosis tells them.

  • OstentatiousEloquence@xanga

    Such a good point, and one I think even in a general sense people often miss. You are DEFINITELY a highly sensitive, empathic father. 

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  • stuartduncan
    • From: stuartduncan
    • Name: stuartduncan
    • About Me: Work from home father with 2 boys, one with Autism and one without. Learning all I can as I push for Autism Understanding and Acceptance.
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