Last night, my post, No Sides From Which to Choose was posted on The Thinking Person’s Guide to Autism’s Facebook page. On that site, a number of autistic advocates took issue with the post, focusing particular attention on the following paragraph:
On the flip side, I’d argue that it’s also why we don’t often hear advocates of the neuro-diversity movement talking about the dark side of self-injury or the violence that can and does so often stem from the constant frustration of not being able to effectively communicate one’s most basic thoughts with those around him. Because it doesn’t fit the narrative of pride and dignity and the right to self-determination that is so vital to share in order to counteract the destructive messages about autism that come at autistics from every other angle. Frankly, it’s the same reason you don’t often hear about those things from me.
The paragraph was poorly written to start, in that it should, at the very, very least, have read, ” …I’d argue that it’s one of the many reasons why …” but that would not have come close to solving the problem, which was not in the delivery, but the message itself.
The first issue raised was that of privacy. That was raised by a commenter here on Diary during the day yesterday as well, who wrote, in part, “Great post. I would like to venture, though, that maybe a significant part of the reason self-advocates are reluctant to talk about self-injurious behaviours is because they’re a very personal subject.”
My response to the commenter was long, but it began with “I agree,” and led to,”as far as parents — those of us who see autism as an integral part of our kiddos are far less likely to belabor the more painful or personal parts of the disorder because we assume that, as you say, these topics feel invasive for our kids and because of that, discussing them feels like a betrayal of privacy.”
Another commenter shared that part of why it can be difficult for autistics to share their experience is that there really is no language that is up to the task. Given the post’s subject matter (the need for a new langauge around autism that acknowledges both pride and challenge simultaneously), I couldn’t help but feel that reason to be particularly profound.
Many others pointed out that many, many autistic activists do in fact talk about these things in great volume and detail and that one doesn’t have to look far to find them. This is another good point and is very well taken.
On the same comment on yesterday’s post that I cited above, I wrote, “To be clear, I’m speaking only of my take on the extremes ..”,” hoping to drive home the fact that I was not attempting to paint with a wide brush, but looking at the outer poles, as they were the focus of analysis in the post. Nonetheless, it appears that that message was obscured. I apologize for that.
Another extremely important point raised last night was that, even if one wanted to disclose some of the more personal details of his or her experience, it’s not always possible to do so without the threat of some very real consequences that can and do result from their disclosure. Given the lack of understanding in the public domain about autism itself and atypical neurologies overall, these could include one’s ability to parent his or her own children being called into question. That’s real and it’s horrifying. As so much is still misunderstood out there, it could mean the loss of a job. That’s another very real threat and a chance that no one should ever have to take.
So it’s vital to recognize that for some who do not choose to speak about these things publicly, it is fear of repercussion from doing so that informs their choice. One commenter whom I consider a friend touched on the fact, and I hope she’ll tell me if this is not an accurate representation of her words, that some may assume from the way that I presented it that shame is a factor. It’s not, and if my words implied that I thought that it was, I again sincerely apologize as that was not remotely my intention.
When I wrote the Huffington Post piece, Like Me, in which I came out as bisexual because I thought it was important that I use my privilege as an assumed straight woman and the platform that I have as such to help remove the stigma from non-heterosexual orientation. (That’s a really messy explanation of the post, but I’m running out of time and it’s the least important thing I’ll write this morning). I passed it first through a dear friend who is gay. His second reaction was that I left out how dangerous it can still be for some people to live openly. It went into the post immediately. It was important. And because it’s not a life I’ve ever had to live, the danger of disclosure hadn’t entered into my thoughts when I wrote the draft of the post. As soon as I heard it, of course, I thought, Oh my God, he’s right. I’ve never spoken or written on the topic again without incorporating that vital point of view – and fact.
The same goes here. Just as I don’t live in a way that advertises my sexuality, I don’t live autistically. I hadn’t thought of danger or connected consequences to these topics when I wrote the post. As soon as I saw the comments last night though, it made perfect sense. And just as in the story above, I will take the perspectives I gained to heart and integrate them immediately into my thinking.
As I wrote to one friend on last night’s comment thread ( Ed note: I’m leaving names out because, even though the conversation was essentially in a public forum, it feels hugely presumptuous for me to bring it here without regard for the privacy of those who offered their perspectives there. I am sharing their ideas though, because I think we all can learn from them together and because I need to share them in order to set the record straight about what my post lacked.) Last night I wrote,
These are excellent points and I am very, very grateful for the perspective and the opportunity to look at it from an angle that I hadn’t considered when writing the post. I will add an addendum to the post tomorrow – or, if I can manage it, will devote a whole post to adding these views. Thank you all so much.
So here I am attempting to fulfill that promise because I think this matters. I am always open to being told when I’m off the mark, wildly or otherwise — eager for it, in fact. And I am grateful for those who put in the time, effort, and emotional energy that it takes to educate a doltish non-autistic parent like me who is trying desperately to learn, doing so imperfectly, and integrating each and every bit of new perspective into the journey ahead. I am especially grateful to those who do so in a way that reflects mutual respect and that contextualizes my words when they’re wrong-headed. I try. I &%$@ up sometimes. I try some more. I will keep at it, and I appreciate your help more than I can ever express.
Two of the autistic advocates in the conversation last night expressed frustration at having to teach parents like me the same lessons again and again. I can only imagine how exhausting that would be. I know that I tire of constantly educating the people who come in and out of our lives, and even the ones who are permanent fixtures in it. While my own experience is a desperately imperfect parallel, making it impossible for me to truly walk in their shoes, it does give me a starting point from which to extrapolate, and I’ve got to tell you, at least from a rational perspective if not an emotional one, I get it completely. I’d be angry and tired and tired of being angry.
But unfortunately, we’ve got so far yet to go in this journey toward truly understanding the experience of our autistic brothers and sisters, and yes, even our own children, that these moments where we step over lines we didn’t see, where we inadvertently trip wires and get taken to task by those who say, “That is not reflective of me and who I am or how I think or feel,” will remain ubiquitous. I will do my best, as I always do, to do this right. But I’m human and I will screw up. We all will. How we handle it thereafter matters. Personally, I am indebted to those who, despite the deep frustration for them inherent in doing so, tell me when I screw up.
One of the last things that I wrote on the TPGA page last night was this:
thank you so very much. I’m so sorry that my post was so inadvertently offensive. I am truly grateful for the time, effort and clearly the emotion that you put into that comment. I will come back in the morning and read everything again so that I can truly take it all in. I take every bit of this to heart and am so grateful for the guidance.
I tried to sleep but it never came. But I didn’t write anything else on the page because there came a point at which I was simply too emotional to form coherent sentences.
I try. I try really hard. I want more than anything to understand. Sometimes I don’t get it. Sometimes I don’t see the whole picture. Sometimes I read something and mistakenly generalize it. Sometimes I inadvertently overstep my bounds. It seems that I was guilty of a veritable potpourri of all of that yesterday and clearly some people for whom I have a great deal of respect were hurt by it. For that, I deeply and sincerely apologize.
I hope that we all can continue the dialogue, no matter how difficult it can be. Again, I am grateful to those who feel like broken records, yet help to guide those of us who so desperately want to be allies in the truest sense.
I leave you where I often do – with the hope that when you read my words, they will act as a springboard for critical thought and that you will leave here and meander through the blog roll there to the right –> the one called “Vital perspectives from autistic adults.”
As I said in a post from May, “And on Tuesday, those parents heard my voice. And my voice that day was no more than a conduit for the voices of experience — Kassiane, Sparrow Rose Jones, Amanda Baggs, TPGA,ASAN.”
Above all, that’s what I hope to continue to be. A conduit to the voices who can tell this story first-hand. Voices like my daughter’s, should she choose to (and / or feel, God-willing, as though she is able to safely and comfortably) raise it someday. My goal is for her to be able to make that choice for herself.
In the meantime, at the risk of sounding like a broken record myself, I’ll end with the last few lines of another post from May.
In the sidebar, you will find links to all of the following, listed under Vital Perspective from Autistic Adults. I urge you to visit them. Get to know them. Hear what they have to say.
Autism and Empathy
Autism Women’s Network
Bec at Snagglebox
Illusion of Competence
Kate – Aspie from Maine
No Stereotypes Here
Tiny Grace Notes (Ask an Autistic)
Yes, That Too
Ed note: Please note that I changed any prior references in this post to “self-advocates” to autistic advocates / activists. Here’s why. Note: If that post is not unlocked, please check back. It will be soon. It’s important. 🙂