In that comment, I was too obscure in making the following points, and I didn't want to elaborate further in that venue because I'd already put my foot in it as it was. So, I elaborate here:
1. I think that because of the efforts of autistic activists combined with our efforts as his parents, our autistic son will grow up in a world that's different from the one those who came before him had to deal with. Different in better ways, we hope.
2. Parenting is a world you can't grasp unless you're in it. And once you're in it, every comment or question that seems to hold some sort of judgment about your choices in that role becomes something that is very, very personal. These comments range from "you willfully endangered your child by having him at home" to "vaccinating your child is child abuse" to even the mildest of suggestions ("Have you tried vitamin B?" and "Did you know that Goldfish have trans fats?" (they didn't)). It doesn't really matter what the source is--we're parents, and we're touchy. It's the most invested you can ever be in another human being, in an infinity of ways. I'm not arguing that it's harder than other ways of being, just that it makes people really, really defensive.
3. About half of the rest of the world is female. Yet, I have very, very little in common with many of them. I'll listen to what they have to say about the female condition, but as my own identity is fairly complex, sometimes, what women suggest doesn't apply to me. I also get advice about what it means to be raising boys. Guess what? Some of that just doesn't apply to my sons, and I know that because I am their parent. And finally, but not least, I've received advice from autistic people about what might be going on with my oldest, autistic son,often advice I've asked for, sometimes advice I've not. The odd thing is, that's always the most welcome advice to me, of all the advice or insight I receive. I am *least* defensive about information from autistic people relative to my son than I probably am about any other inputs about parenting. And it's been so, so useful for us, and I've promised my son that autistic adults are out there, able to look back and explain a little about what he's experiencing now. Not all of that information is directly relevant to my son any more than all the suggestions I have received about my role as a woman are directly relevant to me, but it's all been enormously useful.
4. Finally, I don't have an attitude that just because someone is autistic, I need to behave in a totally different way with them than I would with non-autistic people--although in the end, I sort of do. In fact, I've found that I'm often at my most comfortable around autistic people, so I've rarely felt the need to watch my behavior or my words around people with autism, to turn on my social algorithms and "do the socially appropriate thing." In other words, I've never felt the need to put on kid gloves around autistic people. Around different sorts, say soccer moms, that's a whole different feeling for me. I don't put on kid gloves in such milieus as much as I put on a muzzle.
My observation about conflict and bringing it? I was thinking at the time what I blogged yesterday: open, candid discussion helps unravel differences and lead us to better understanding. As I've noted, I'm not so sure about that now. There are very, very bad things happening to real people because of these open discussions, and I'm starting to think that this brave not-so-new world of the Internet is literally not a safe place to open up about anything, especially using your own name, especially if you have a family.
The bottom line is this: I welcome insights about my son or that might apply to my son from autistic people more than I welcome insights from just about any other group or tribe or whatever we want to call it. I welcome insights at any time from people who have something to teach me. That doesn't mean I'm going to agree with every little bit of it, and it doesn't mean that ultimately, I won't decide to do what simply seems the best for our children, autistic or not, based on our own lights. But, at the least, on the very rare occasions that I have disagreed with autistic people, I haven't feel the need to put on kid gloves--or a muzzle.
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ETA: Please read this blog post, which contains a concise summary of the things people say and do that make autistic people feel unheard, ignored, and dismissed. It's just about the best precis I've seen, and I will *not* forget it. I'd suggest that anyone keep them in mind.
6 comments:
"I'm starting to think that this brave not-so-new world of the Internet is literally not a safe place to open up about anything, especially using your own name, especially if you have a family."
I fear this to be true, and it is why I am mostly pseudonymous on the web. I admire people who are not pseudonymous, who open up on the web because they do, without a doubt contribute to people's understanding, but I worry about all of you too, too.
I noticed my first list didn't include people like michelle and ari and others, but I do think that this is because of my worry for the children,
Thank you for this post and the previous one. It makes a great deal of sense and explains a lot of things.
I understand why autism parents are touchy about being criticized for their parenting. But I honestly don't believe that the autistic commentators at TPGA were telling anyone how to parent. In fact, I think the more important larger issues were quite removed from the personal experience of parenting. JMO. And while it might "feel" as though you were being attacked for your parenting, as you said in your Tweet to Ari, that doesn't mean that it actually happened. And I hope that parents who become involved in the discussion can a) address what was actually said, b) not blame autistic adults for the judgments of other people, c) not discount autistic people's comments if the people in question aren't parents. Especially when the subject in question is more general disability issues regarding privilege and whose voices get heard.
Hi, Sarah--thanks for posting; I appreciate your taking the time.
I do want to clarify that *I* didn't say I felt attacked--that was another parent whom I've never met. I've never personally *ever* felt attacked as a parent by autistic people. I've unquestionably been attacked by other groups, but not autistic people. I personally don't usually talk in "feelings" unless I'm trying to be nice to someone; I prefer more concrete bases for discussion, which is why I was struck by the fact that there was no way to cut and paste that emotion the other parent had expressed.
And the point of the parenting part of this post was that *all* parents are touchy, not just parents of autistic children. Really, really touchy. I can think of dozens of examples covering a huge number of situations, none of which are related to autism, in which parents I know have been defensive.
You make a good list there, and I hope people absorb what it says.
I personaly don't care about people disagreeing with Autistics adults after listening, we are not always right, what I don't like it is when parents don't listen to us.
Please don't take this as a critic for you, I just want to explain my point of giving advices.
I do think that some things that parents do thinking the best for their children can be bad, my own parents did what they and every professional thought was right, therapy, changing behaviours and medication, but the professionals were emotional abusive, the drugs were unnecessary and ruined me, changing behaviours made me feel terrible, I told them and nobody listen, my parents were scared and the professionals had a god-complex and couldn't be wrong, as adults they all knew better, for reasons like this I want that people listen to someone that has been there before, it doesn't mean I want to tell anyone how to raise their kids. Parents like mine get scared and listen to wrong people, parents think being normal is being happy, that worries me.
Again, I'm really not talking about you or anyone specifically, but about me and some random people that I don't know as an example.
@mybrainyourbrain Thanks for your comment. My reaction? Oh, hell yes. I think one of the most terrifying things for me as a parent is the constant question, "Am I screwing this one up big time? Is this a bad decision? Will this scar them for life in some way, and I can't even tell right now?" Terrifying. I don't want to listen to the wrong people, either. I think all parents will make mistakes--right?--but you don't want to make those HUGE mistakes that end in tragedy or permanent emotional scars.
I do have to say that in our house, we have no expectations of being normal, but we're all pretty happy right now.
I've asked for advice from autistic people on many an occasion, and will do so more in the future, especially as TH approaches adolescence. I've already bought TH a couple of books that autistic people have written about their teen years so that he can read about their experiences. I can't even imagine how little he would relate to some book about a "normal" adolescent, whatever that is.
Thanks for clarifying. I find Twitter hard to follow on a good day, so it helps to hear you clarify what you meant.
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