No, really, I am. That's why I do what I do. The harsh reality is that your kid is going to grow up to be more like me than like you, no matter what you do to change that.
There are a few ways of dealing with this. One is to ignore it & to devalue what we do with any or all of the tactics out of Derailing For Dummies. One is to insist that your child will be like you through some cure. When this inevitably doesn't happen, the legacy of failure will haunt your child forever. Or, you can accept this truth & work with autistic advocates.
Our idea of the future we want for your kids-and for ours, and for ourselves- isn't what you seem to think. I'm all for helping your child's sensory issues, helping him develop job skills, giving her an easily recognized mode of communication. None of this things seeks to change who we fundamentally are.
What I fight for is a world where your child is seen as whole as she is, not as a mistake or sick or broken. I am fighting for a world where the tragedy model of autism is a think of the past, where inflammatory terms such as "autism tsunami" are seen in the same light as racial slurs. I'm fighting for a world where people are accepted and expected to be the best them they can be, instead of pruned into a false normalcy.
That is what I want for your child. THat is what I want for all people. So yes, I am on your child's side. For his sake, I hope you are too.
Wow. This post *so* needs to be permanently pinned, perma-linked, tweeted, etc. etc. Thank you, Kassi.
ReplyDeleteWell, I'm not gunna STOP anyone from tweeting and linking...
ReplyDeleteI actually wrote this right after the attacky time I had at an ASAN protest of autism speaks. It was quite the experience.
Being an autistic girl who is still a minor in my state, and, so is seen as "child" by many people, I'm really thankful you are fighting for me.
ReplyDeleteMy parents care for me well, they are in that rare thoughtful group, but knowing the worse kind of life I could have had, and the life many people like me are living, and knowing the world still does not want that for me... that the world sees me as a mistake, not whole as I am... thank you. Really, thank you.
What do you do when you have been doing it all wrong? As a parent, how do you make it right? Where do I start? I grew up in a closed off family. No diversity. No exposure to different kinds of people. This is now a disadvantage as a parent to an Aspie. Really a disadvantage in general.
ReplyDeletePlease, don't be upset by my ignorance. I love my little girl. It just doesn't seem enough sometimes. Or it's not expressed the right way. I want her happy. I want her anxieties to go away. Did I cause them? I only have non autistics perspectives to go off (therapists, family, school).
I know this is a very late reply, Making Sense of the Senses, and you might not see it, but here goes.
ReplyDeleteMy thoughts are to just read as much as you can possibly find that is written by actual autistic people. Some of it will apply to your kid, some of it won't, but once you've read about it, you'll start to notice it when you see it going on.
Regarding anxiety, try to figure out what triggers them. Does she mostly get anxious is situations with a lot of stuff going on - lots of noise, bright lights, movement, tactile sensations (eg getting wet, having hair brushed, etc), things like that? Then you're probably dealing with sensory overload.
Does she mostly get anxious when her stuff is moved around without her permission, or when you take a different route home than usual, or other changes she can't control? Then it's a need for predictability.
Does she tend to get anxious about social situations, afraid yet interested in other kids (as opposed to completely ignoring them, which has nothing to do with anxiety), or obsessing over what so-and-so meant by what they said? That would be a kid who is sociable but is becoming aware that people often reject her or get mad for reasons she doesn't understand, which obviously causes anxiety in a lot of kids. Or a kid who needs predictability realizing just how unpredictable other kids tend to be.
Of course, it could be something else, but those are the three most common ones in my experience.