as small as a world and as large as alone, karalianne: fogwithwheels: stimmyabby: ...

8:31pm June 29, 2014

fogwithwheels:

stimmyabby:

chavisory:

So I’m writing an intro for somebody else to reprint my post “You Should Tell Your Kids They’re Autistic,” and here is a thing I do not understand:

Like tons of these parents think that they can keep their kid from feeling different, or from feeling wrong, or from being disabled, if they just don’t tell them.

But but but…have so many people really never had any experience of feeling something that they thought only they felt? Or of being alarmed at something that was happening to them only because they lacked crucial information? Of feeling like something must be wrong with you only because you’d never heard somebody else talk about an experience? How many women especially haven’t heard a story of someone who thought she was dying when she got her period only because no one had told her?

Is that how, like…something…the experience of being “normal” is—that you could really never have had an experience like this from which to understand what I’m saying, when I assert that it’s better to know that what you’re experiencing has an explanation?

I am more and more flabbergasted the more I think about it.

And especially. I think realsocialskills wrote a post about this? How, like, if your kid’s going to therapy, they definitely know something’s different, and if you don’t tell them what it is they might just think what’s different is they’re bad.

And I think related to this is the idea that if you don’t tell your kids AND you don’t tell anyone and you don’t admit it to anyone

well then you can stop your kid from being disabled.

And that’s a different post and a longer discussion but I lived through that and just, ugh, never ever ever do that to your kids, to anyone. I can’t emphasize that enough.

But yeah, it’s just, they know. They may not *know*, but kids pick up that something is different, and if you’re not telling them, and if you’re denying them the chance to get that information, you’re denying them the chance to get affirmation.

not only that, but when they want to make informed choices about things, they can’t, because they don’t have the information. And even if they DO figure it out, they don’t have the required documentation to access most resources.

I wish I could elaborate on this topic but unfortunately I usually just get so overwhelmed and then shut down. So I’m glad others are talking about it

I relate to all of this so much, because I knew I was different. My whole life, I knew. I wasn’t diagnosed until I was 28 years old, but I knew I wasn’t the same as my classmates at school. I felt broken so, so much of my life as a child and young adult.

And when I found that I really, truly related fully to descriptions of what it’s like to have ADHD, it was like coming home. It was real. It was me. And I sought diagnosis, because there is help for ADHD if you have one and my life was falling apart.

And I got the label, and there was relief and dismay and distress… and after a while I didn’t feel broken anymore. Not all the time. Not like I used to.

Knowing is power. Wholly beyond the assistance you qualify for once you have a formal diagnosis, knowing that you aren’t actually broken, that there’s a reason certain things are difficult or impossible, that matters. It gives you power over your life that you don’t have when all you are is different and broken. You know where to find the help you need, be it books or professionals or other people who have the label you have.

It is so important to know.

Many autistic children, me included, eventually conclude that we are not even human beings.

Nothing could be worse than what we imagine in our minds when we don’t know who we are.

But telling a child they’re autistic has to be more than telling them they’re autistic. I was first told when I was fourteen. As in, I heard words like ‘autism’, 'idiot savant’, and 'developmental disability’, suddenly cropping up a lot. But these words meant nothing to me, so I really had not much interest, and what interest I had, I couldn’t follow what the connections were. Like I read a book by Donna Williams and that was life-changing and I identified with it utterly, but I still couldn’t tell you what autism was after I read it, or how I had it in common with her, especially since we had a lot in common that wasn’t autism, too. And then I read a book by Temple Grandin, after my doctor told me I “reminded him of a woman he knew who thinks in pictures and designs cattle handling facilities for a living because she can run tests on them in her head”, and I identified some but not as much as with Donna Williams.

But even reading that stuff, it didn’t sink in with me what autism meant, nobody explained autism to me, and I honestly felt better identifying as psychotic, even knowing that I probably wasn’t really psychotic, because at least I knew what psychotic meant. And autism was such a hard concept to get a handle on, especially in the nineties when nobody really knew what it was anyway. It felt safer to cling to labels that were false but felt more solid.

(Which I later learned, far from being uncommon, is a common reaction for people with psychiatric conditions – to cling to a label other than the one they’re diagnosed with, whether because of denial, or because the other one seems to fit better, or because one of them makes sense and the other one doesn’t, even when you know the ones you’re clinging to are wrong. So I clung to plurality and psychosis for dear life because they made sense and autism didn’t and developmental disability made even less sense because it was just a jumble of words that had no meaning. I wanted things I could understand, even if I knew they weren’t true. I later saw a bunch of videos on abnormal psych featuring interviews with patients who seemed to be doing the same thing I was – clinging to PTSD in the face of a schizophrenia diagnosis, for instance. Of course, often patients are right when we do that, but sometimes we’re wrong and have other reasons that are more important than being right. And psychiatry rarely understands this or makes room for it or sees it as something reasonable for people to do in the face of uncertainty.)

Anyway, autistic people who don’t know they’re autistic are going to think the worst, and I mean the very worst. I thought that I was not human and that I was going to grow up to be institutionalized. By the age of 14, I was planning ways to learn survivalist skills and disappear into the woods to avoid that fate. It didn’t work out, obviously. But with autistic catatonia and a growing loss of skills every single day, and pressure to perform even better for fear of being called “backsliding” or “regressing”, I mean seriously, I needed to know WTF was going on with me. And I needed to know what autism was in a very concrete and comprehensible way.

I would write more on this but my meds are making me sleepy. I think this is a very important topic and that withholding this kind of information from a child is horrible. Also many times your child already knows because they’ve heard you talking about it. And what they’ve heard you say can really shape their opinions of themselves. This is especially true if you think they’re too young or oblivious to hear you – they’re probably not. And even if they are, they may be storing up all those words in their head to understand later, and then they’ll understand. So never assume they won’t hear you (including hyperacute hearing) and never assume they won’t understand what they’re hearing. No matter what you’ve been told about their comprehension skills. Kids pick up more than people expect.

Here’s what Jim Sinclair has to say on the topic:

I’ve been living with autism for 27 years. But I’m just beginning to learn about what that means. I grew up hearing the word but never knowing what was behind it. My parents did not attend programs to learn about autism, did not collect literature to educate schools about autism, did not explain, to me or to anyone else, why my world was not the same one that normal people live in.

(Should parents tell their autistic children that they are autistic? I think so. If the children notice words at all, they already know the word is being used about them. But be sure to tell them what it means. I was told that it meant, among other things, being dumb, crazy, malicious, uncaring, and unmotivated.)