AINT' NO SUCH THING AS HIGH FUNCTIONING
A very well known advocate for kids/people with autism recently wrote an article about Asperger's and she said there's nothing "mild" about Asperger's (also called "high functioning autism"). THANK YOU!! If I were still in the same state as she, I would kiss her on the lips.
No there's nothing "mild" about Asperger's. It's not "Autism-light". Not only for family members who are witness to so many tantrums, rigid rituals and monologues that have interuppted conversations, meals, quiet times or telephone conversations, focused a topic no one was talking about or is interested in in the moment. No, the most important thing is that it's NOT a "light" condition for the child living INSIDE the "bubble" (the code my husband and I have given it so we can remind each other at key moments that our daughter is fully engulfed in the 'bubble" and to filter ALL her words/actions accordingly). My daughter KNOWS she's different and is constantly trying to reassure herself that her thoughts and characteristics are the total result of having AS. She's trying to reassure herself that she's NOT a freak. I've lost track of how many times I've told her she's PERFECT just the way she is because this is who God has created her to be; that she has an amazing mission here on earth and that she is loved in a powerful and mighty way. But maybe on those occasions (far too many for me to comfortably admit) when I am impatient with her, when I QUICKLY go from zero-exasperated (sp?), when I have my own Mommy Tantrum, I'm really showing her that there IS something wrong with her.
It's exhausting making the world okay for her because there are MANY days when NOTHING in her world is okay.
One of the key components of autism is lack of trust with anything/anyone outside of the person's "self" and I try SO HARD everyday to show her love and acceptance, but do I wipe it all away when I've having one MY moments of being completely overwhelmed? Aren't I just validating her already known suppositions of her world that nothing can be trusted and it's better just to stay with her rigid patterns and completely instrumental way in which she deals with her fellow human beings?
Sometimes it's all too much. A highly verbal daughter with Asperger's does not equal a highly functioining daughter with a "little bit" of autism. For my daughter it means that her beauty and brains expertly bely the rigid thought patterns and inability to have a dynamic emotion sharing relationship.
And now I've just painted a really grim picture and I feel guilty. As if now I should go on to describe how much fun she is, how great it is to partner with her in her home education, what a joy it is to watch her blossom as a musician and how it makes me so proud that the little neighbor children (all younger than she, but that's by God's design, not because we have neighbor kids who are her age that won't play with her) adore her. But I'm very tired today because there's nothing "mild" about Asperger's. I think I'll take myself for a bike ride on the beach.