Well, not as a general rule. I make exceptions obviously, but someone kind of has to earn my ire.
Some absolutely wonderful people I know are parents (obviously. I work with kids). Some of them are even parents of autistic kids. Some parents of autistic kids have been nothing but lovely to me. I count some of these people as friends, even-a much more exclusive group than "people who are pretty alright".
If you are a parent & feeling like I hate you because I call you on something that's a problem-NT centering, for example, or calling yourself the autistic community when you aren't autistic, or for accidental use of silencing tactics or whatever-that does not mean I hate you! If I hate you, I'll probably say so, in so many words.
It is not an attack on all parents when I speak the ugly truth that many, many parents are horrible. Don't tell me that doesn't happen. It does. Been there, done that, paid the therapy bills. Don't tell me that parents don't center themselves in discussions on disability. A lot do. Many probably don't mean to. The ones who persist in doing so are irritating. That doesn't mean I hate them, unless they're really egregiously obnoxious about it.
I am not demonizing parents as a group pretty much ever. Those of you who think so really need to get over yourselves. If you feel 'demonized' by someone with a disability calling out problematic behavior, then maybe you need to look at yourself and why you feel hurt, especially if you insist you aren't Like That. If you are so deeply hurt by hearing about specific things that specific shitty parents have done, dig deep inside yourself and figure out why that is. Is it a knee-jerk feel-offended-because-someone-didn't-glorify-parents-of-disabled-kids? That's a personal problem that you may need to work on. Is it an I-feel-bad-because-I-empathize-with-these-shitheads? That's a different kind of personal problem. But it isn't me demonizing parents (I keep using that word because it keeps getting thrown around and I don't really know what the users are using it to mean, except "making out to be a demon") when I give specific examples of parenting choices that are shitawful.
But I don't hate parents! I hate certain things some parents do! I hate parents who are horrible people. That isn't unreasonable! I hate when parents tell me I need to shut up because of whatever stupid reasons! Also not unreasonable. And I think it's fair that I hate the dad who decided that stabbing an autistic teenager in the arm because of...whatever reason he gave, something about his wife and crying...was a good idea. Don't tell me that's unreasonable either!
So, if you think I hate you because you engage in any of those things, I don't, probably. But I sure think they're shitty things to do. If you want to know if I hate you, specifically, you can ask instead of assuming.
But I probably don't. I just won't hide what I think to make people less uncomfortable.
You would have almost made me laugh, had the truth behind it not been so horrible: "been there, done that, paid the therapy bills".
ReplyDeleteI think the problem is (quoting from what someone said in the TPGA post said, can't remember who) is in the receiving and sharing of information. (At least it was in my case).
In that first response you gave to me in TPGA, (as I have said) I felt affronted, like you'd been unnecessarily harsh with me. To be honest, I kind of felt reverberations of that initial "too harsh" reaction in your second response to me. But instead of focusing on those feelings of MINE, I focused on what you said about "lacking the tact gene". That gave me pause for thought, even so, inside (I'm being honest here) I wondered if it was just an excuse to be mean to me (I know, I already said somewhere that I obviously need to grow a pair, or thicker skin, get over myself, or whatever).
Once I came over and visited your blog though, I realized this is just the way you "talk": frankly, openly, no bullshitting or mincing words. I love that. When I realized how you express yourself on your blog, I realized that your response to me was just an extension of that. I love that in a person!! I don't know why I had trouble accepting it on the "written page" (at least initially).
I actually get into trouble for the same thing when I speak to people. I get too passionate about things, I get riled up and just spit out the most important things in my head. My intention is never to offend or insult, yet people are often offended and insulted by what I say.
I can't imagine what it must be for you to get that a lot. Especially when it's about something that is so central and important to you (and me too!): Autism Advocacy. I think I made the mistake of referring to myself as part of the "autism community", but I really feel like I am a tiny little part of it. I want to understand, I want to help and I want to do right by my son.
I don't really know where I'm going with this other than to say I know how exhausting it is to have to keep repeating yourself till you're blue in the face and still have people not get it. I think your experience of that has been a little more extreme than mine. You're very outspoken about this and I look forward to learning much more from you. I don't pretend to "get it" 100%, but I like to think that I mostly do (or at least try to!).
I'm glad you came over here & have been commenting & have been reading, marsupialmama.
ReplyDeleteBecause, yeah, I DO just kinda talk like that (mean is different. I can do mean. I don't like to).
AND.
Because it's letting me get a deeper view of you. I think it's fair to say we misunderstood each other. And that happens.
And honestly, I really LIKE finding out that a clash was actually a misunderstanding & not, in fact, the result of any parties just massively failing everything forever.
**yay** Me too. (Finding out a clash is just a misunderstanding). And as I said somewhere in response to one of your comments (again, my stupid memory fails me... I guess sleep deprivation does that to a person!) I feel silly for not having "got it" sooner. It's just such a central point isn't it? (Argument from Tone). Listen to the content, not the "tone".
ReplyDeleteAnyhoo, I'd been trying to find a way to get in touch with you on twitter, or to see if you had your own "blog page" on facebook, an email or something because I had a few questions I wanted to ask you. The central one is what kind of therapy/teaching you do and where you learned the it? (Stupid question, experience is probably a large part of the answer)
I'm currently looking into starting an online course on behavioural interventions for autism, cause I feel too much of an "outsider" in my son's programme. (The Florida Institute has been recommended to me.)
I "volunteer" at the school he goes to (papers haven't gone through yet) but I spend most of his day there with him, there's another undiagnosed little girl (not sure she has autism) but it does look like she has something and she's being evaluated for it. She's the first child of the parents though, so the penny hasn't dropped for them, I shouldn't even know about it. Evaluations in the country where I live take for freaking ever, but I digress.
I just want to know how best to help my son! I'm currently not "supposed" to look sit in on his sessions, because my 15 month old daughter is too distracting for him. Getting a video camera set up causes all kinds of trouble not least of which is I don't have time in the evenings to watch 2.5 hours of therapy! Plus they might go out of range or whatever, it just doesn't seem practical to film.
I'm sorry if this seems like I'm just using you as a tool to help my son with. I wouldn't blame you if the thought occurred to you!! If you visit my blog's facebook page though (or found me on twitter @MarsupialMami) you'd see this was *definitely* not the case.
You made a penny drop for me. Thank you for that.
Another central question I have is I guess a stupid one about how to talk to autistic people (whatever age) who are verbal (or at least typing and communicating with me). I use a lot of figurative speech. I do have trouble expressing myself clearly sometimes if I don't have a metaphor or figurative phrase to fall back on.
Is it insulting to try to use both? (Use the expression and then maybe after in brackets try to explain what I meant in another way?) Another big thing about people with ASD is their difficulty with figurative speech because they think more concretely and tend to take things literally. Since it IS a Spectrum, I know some people must find it a lot easier to understand those types of phrases than others.
So how would you suggest I handle it in conversations with verbal autistics? (I wrote "autistics" because it's your blog and that's how you talk/prefer. The anthropologist in me feels uncomfortable using that wording because... Well, I was "taught" not to. Just felt I had to say that, don't know why).
Thanks again!! :)
I'll find you on twitter & FB.
ReplyDeleteAnd I personally like metaphor (meaning) structures. But I might be weird. Or that might be normal. I have no idea.
The teaching I do is actually something I pretty much developed myself almost 10 years ago. I saw a hole in what kids were being taught & did my best to fill it. I was working on a special ed degree at the time & we talked a lot about multiple intelligences and evaluating learning styles, so being able to adapt the what to the how meant the kids were learning advocacy skills (and there was much rejoicing).
Okay, that's really cool... (About the teaching thing, and it's also what I had suspected). Is there anywhere you post about that specifically? I've been reading links and comments and so have thus far only got down to the bottom of the third link you gave me on your most previous post.
ReplyDeleteThen of course there was the sidetracking through your blog... **lol**
Sorry if that (if you have written about your teaching theories) is a stupid question and really obvious, I've just been so caught up in the "dialogues" (one post!! There's TEN of them and I'm guessing each has 90+ comments!!), that I haven't managed to poke around your blog more deeply so I could find them...