I wanted to find an image of an actual Welcome mat, but then I found this and it’s got wellies AND a rainbow, and well, doesn’t it just make you feel welcome? Moving on …
I’ve been struggling with something. Wrestling with right and wrong and the rights of the wronged and egos and bruised feelings and their context vis-a-vis the burden of a greater purpose that cares not for perceived slights but a heart that does.
I’ve been trying to find the words to say what I need to say without drawing or encouraging or hell, even recognizing lines in the sand because my raison d’être here is erasing the lines not reinforcing them, and yet I worry that all these words will do precisely what I am writing them to avoid.
A neurotypical parent sent me an e-mail the other day. She was hurt. She didn’t feel heard. She felt that I was playing favorites in my responses to comments, proven by my validation of a comment by an autistic commenter with whom she disagreed, and, fairly enough, with whom she knew that I fundamentally disagreed as it related to a specific part of the comment. She said that Diary no longer felt like a safe space in which to voice an opposing opinion.
I didn’t write back. My response in the moment wouldn’t have been the one that I would have wanted to give her. I was tired. I was angry. I was frustrated. I was tired. Yeah, I said tired twice.
I went back to the comment thread to which she was referring and I made my validation of the autistic reader’s comment clearer, more specific, more conditional, as it were. It felt wrong. All of it. But I couldn’t keep wrestling. I just didn’t have it in me. So I walked away. Or I tried.
You see, these conversations don’t leave me. Katie and I were just joking about Luau’s reaction to our shared propensity to perseverate on, well, everything. “Just stop thinking about it,” we said in Daddy voice and then dissolved into laughter at the absurdity of his suggestion. “Has he met us?” we asked sarcastically.
And so I’ve been thinking about it. Because I never want Diary to feel unsafe. For anyone. I want everyone here who approaches respectfully to be respected in return. I want, no I crave, dialogue. Dialogue that makes us all question our thinking, consider our biases, examine our perspectives, and, ultimately, grow. I want anyone and everyone with something to say to be heard.
But ..
Yeah, there’s a But.
No matter what I, or any neurotypical person, parent or otherwise, may think about a given topic as it relates to autism, I will never tell an autistic person that their interpretation nor expression of their own experience is invalid, nor support anyone else who is doing the same.
If an autistic person chooses to generalize a particular aspect of the autistic experience to others while I may caution against us as parents doing so again and again, I will not tell them that they can’t. I will simply say that *I* don’t believe in generalizing, well, at least not in general. (It’s okay to laugh; that was supposed to funny.) Because sometimes generalizations are valuable and necessary. Want a few examples? EVERY human being has a right to dignity and self-determination to whatever degree possible. EVERY autistic person has a right to the presumption of competence as it relates to believing in their ability to learn. EVERY autistic person has the right to speak about autism (in their own way) and be heard.
Do I think that every autistic person is always right? Um, no. They’re, ya know, people, and people have this propensity to, well, not always be right. Or to say things that they really, really mean right now that may, with more life experience turn out to be abhorrent to them later. Need examples? Read anything I wrote in 2008. you’ll find plenty of material. So, like all flavors of people, I agree with some of them sometimes, a few almost all the time and some of them almost none of the time. I’m a person. They’re people. That’s how it works. But …
Yeah, there’s another but.
They are people who live life through a lens that is different from mine. They have a unique perspective on autism because, like my daughter, and I’ll say this slowly just to make sure it’s clear … They … Are … Autistic. And while some of them may be autistic in [what looks to me like] a very, very different way than my daughter, there are aspects of their experience that will be far more similar to hers than my own. That matters.
A young woman with Aspergers’ once explained it to me thusly (and I hope she’ll forgive a very sloppy attempt to paraphrase): Let’s say I’m a duck and a nonspeaking, severely autistic child is a goose. I’m not claiming that I’m a goose or that I know exactly how it feels to be a goose, but I do know how it feels to be a bird. I know, wow, right?
So let’s fast-forward fifteen years. God-willing, Brooke is in a place where she can share her own experiences if she so chooses. For this example, we’ll assume that she chooses to do so, though of course that will be entirely up to her. A mother blogger is writing about something or other .. how she sees the world and what she thinks is important for other parents of autistic kids to know and blah blah blah. Whatever it is, it resonates enough with Brooke that she takes a risk. She dares to put herself and who she is and what matters to her, on a very personal level, out there and she says, “Hmm, well, yeah, but …. THIS is what I think is important to people like me. And THIS is what I think is a better way to keep us safe. And THIS is how I’d like to ask you to look at it.”
What do I hope to God that mama blogger will do?
I hope she will listen. I hope that she will say, “Hmm, perhaps that wouldn’t be the way that I would have said it or thought it or, heck, thought about it, but yes. That. Yes.” I would hope to God that that mama would say to my girl, “Yes. This. Thank you,” and NOT, “Yeah, well, I hear you, but let me qualify what you’ve said to make it more palatable to my other readers and /or to make it jive a little better with my own philosophy.”
So yes, you might catch me playing favorites. And while Diary will always be a safe place for constructive disagreement and respectful discourse, I will go out of my way to ensure that autistic people feel comfortable here and that their perspectives are heard and respected first. Because I desperately want them to be part of this conversation. Because we NEED them to be part of the conversation. Because they DESERVE to be part of a conversation about what life is like for them and others who experience the world in similar ways, whether they be geese, ducks, penguins or peacocks.
And because the only way that I can ask that mama blogger to listen to my girl in fifteen years … is to do it myself today.
a diary of a mom 
Well said, Jess! I wish it hadn’t been necessary but you said it well.
Love you,
Mom
I can’t tell you how many times I’ve read a blog detailing “autism wars” and felt absolutely hopeless. I’ve felt angry and sad and helpless and genuinely worried about my kids’ future. Would my boys not be heard? Will they be corrected and patronized about their thoughts and feelings, as if they are less than a complete person? This blog has truly been my beacon of hope, the place I turn to when all the noise and fighting and utter crap out there is too much. I read your words about Brooke and I read responses from NT and autistic people alike. I am introduced to autistic bloggers whom I have gone on to follow and love. I am awestruck at how level and consistent you are with your responses to those who are truly disrespectful of those on the spectrum (and I’m not referring to the person who wrote the email- a thread about facilitated communication is coming to mind when I’m thinking about disrespectful commenters). Sometimes, this feels like the only place where parents and autistic people can come together and have respectful dialogue. It’s the one place where I feel like we are all in this together. Thank you for this blog, and thank you for creating this safe space.
Thank you so much for this (and for clarifying that we’re not implying that the reader I mentioned is guilty of any of that, which is important.) I am grateful for what this space has become.
The political discourse in this country offers, I think, a sense of how these dynamics often work: the loudest voices tend to be front and center with any given issue…they get all the attention, so there seems to be this enormous divide between people. Quiet, moderate voices are pushed away by it all…they don’t like the tone of many debates, so they avoid them, go about their business.
I see a similar thing happening in the autism community, where antogonistic voices are front and center…the impression is that “autism wars” are happening…but between the different groups there is a silent majority…a huge number of respectful people who dislike the antagonisms, who are turned off by the negative tone. They ignore the angry debates, go about their business.
I think people are drawn to Diary of a Mom because you articulate a viewpoint in that neutral zone. Not neutral in the sense of “I have no strong feelings on the issue, but neutral as in, “respectful”. I think many, many people want to hear different views, participate in a reasonable discussion…they may not agree with everyone, but they don’t feel hate or anger towards a person they disagree with. I think the silent majority is kept out of many discussions because of the tone…but they’ll engage with those who are communicating in an inclusive, positive way.
What this means, though, is that others…those who only want to hear their view represented…will be put off by different opinions. Some will want Diary of a Mom to be an echo chamber that reinforces their own beliefs…and when you deviate, say something they disagree with, they’ll feel angry, say you are “biased”. There’s nothing you can do about people like this. I’m sure they are sincere in their feelings, but really what they are saying is, “You deviated from the script I expect you to stick to.” And anyone trying to force your writing in a certain direction or limit your ability to express yourself honestly…this is not someone you can ever really appease.
As someone on the spectrum, I appreciate your curiosity, your willingness to hear different views. I think all of us…NTs, autistics, parents, educators, friends, etc, should be willing to hear others…be willing to see the world from a different perspective. Doesn’t mean we have to agree…it just means we’re choosing respect over bitterness. I think Diary of a Mom proves: the more respectful our discussions, the more room we create for that silent majority that too often feels pushed away by the negative tone.
(holy crap, this turned into a book, sorry Jess.)
Best. BookComment. Ever.
“I see a similar thing happening in the autism community, where antogonistic voices are front and center…the impression is that “autism wars” are happening…but between the different groups there is a silent majority…a huge number of respectful people who dislike the antagonisms, who are turned off by the negative tone. They ignore the angry debates, go about their business.”
YES!!!! From one of the (mostly) silent majority.
For whatever it is worth, your posts have meant the world to me in the last weeks. My son is explosive and I have found comfort and ideas in your writing.
Thank you.
I’m so glad. I find comfort in you finding comfort. Neat that. xo
Thanks to you I have been reading other mom bloggers that share your attitudes, and autistic bloggers, and I am so many levels of thankful I can’t even tell you. Having an idea of how my son’s brain might be working is wonderful. It makes me a bit sad and worried sometimes, but it helps so much to know that we can work to figure it out together, to learn to understand, and to help others understand.
Like you, I get SO frustrated when NT parents do the “yes, but” thing to people who actually ARE autistic. It makes me wonder if they are doing the same thing to their OWN child, which would be so imesurabely sad if that’s the case. If non-autistic parents won’t listen to autistic adults and accept that their experiences are valid, what does that teach their own children?
The phrase “not like my child” as an excuse drives me crazy also – I blogged about it because I was so annoyed. Just because the experiences of other autistics doesn’t EXACTLY match my son’s, does not mean that there is not a pearl of wisdome or knowledge that I can gain from hearing their words and validating their experience.
(http://walkinontheedge.wordpress.com/2013/11/01/autistic-speaking-day-when-autistic-people-speak-their-truth-just-listen)
It’s a stretch for us NT’s to get it sometimes – we just can’t because the experiences/perceptions are so different. But even if we don’t “get it” all the way deep down, we can still listen and acknowledge another’s truth.
Thank you for the space you’ve created here, and for supporting autistic bloggers so they can share their experiences.
I see other sites where only autistics are “allowed” to comment, and other sites where it is definitely not a safe place for autistic people to even browse through. I’ve always felt like this place was a safe place- safe for everyone. And that’s how conversations happen and that is how we learn from each other. If you need to “play favorites” in order to encourage that feeling of safety, and to encourage the variety of perspectives represented, then absolutely do it. This is a sacred place to so many of us in large part because of the variety of experiences that are shared here.
I have been following Jess, learning from her writing, and enjoying this community for 3 years. Well, 3 years exactly next week. I shared some feelings with Jess via a personal email that had now been turned into a blog post sent to 34,000 people.
I am the mom to two wonderful, happy, loving, amazing, challenged, triumphant little autistic kiddos aged 4 and 5. What I questioned in a series of comments was the idea that autistic people do not understand social context, do not know when to rebel, when someone is lying and who to trust. I tried, in what I thought was a dialoguing kind of way, to say how I thought my two children did not fit that sweeping statement and how, slightly modified, could include all our kids, all autistics.
For that I was strongly put in my place. Jess agreed with a Yes. This. Thank you.
I was hurt. I wanted to advocate for inclusion of my kiddos. But I left it at that.
I did not expect a response to my private, personal, caring, thoughtful email to Jess. I certainly didn’t expect a public shaming, ridicule and bullying.
It’s not okay to bully anyone. Even some neuro-typical parent who advocates for their beloved kiddos.
I’m very sorry that you view this post that way. Clearly we have extremely different perspectives on what it means to shame or bully. This post was about neither for me – not even remotely – but I’m nonetheless sorry that you were hurt by it. My thought process was public because that is what I do. That is, presumably, why you’ve followed me for three years. If I didn’t make my thoughts public, openly dissecting and analyzing how I feel about things and why – even very personal things, there would be no blog. This wasn’t about you, but about the discourse, about how we create safe spaces and ensure comfort in participation for those who risk so much to add to the conversation – things that I spend an inordinate amount of time thinking about. I’d ask you to read Emma’s comment as a pretty mind blowing example of what that can mean. It’s pretty heady stuff.
I hope that at some point when it’s less emotional, this will look different for you. Perhaps it will for me as well. If it does, I’ll undoubtedly write about my shift in perception, as I do. In the meantime, I wish you and your beautiful family all the best.
Jess
For what it’s worth:
When I wrote that first absurdly long comment on your “believe” post, all of not-quite-two weeks ago, said comment was the longest piece of coherent, communicative prose I’d written in a year, maybe even in a year and a half.
I’d been doing research with a couple faculty members (all of whom are incredible teachers) for the majority of last year, and I solved lots of problems and made lots of progress, but never wrote a single paper. Writing had been my thing since like, forever. But faculty-advised research meant that I was expected to language my thoughts even before my paper was done, give them updates, and go over my drafts with them. It was disastrous. We might as well have been speaking different languages. In retrospect, I realize that we were. The worst part was that neither I, nor my professors, knew that we weren’t speaking the same language. I hadn’t even self-diagnosed as autistic yet; instead of being autistic, I was simply incomprehensible. And no matter how much my professors tried to help, their attempts to “remediate” me, only compounded the problem. If my language kept being the wrong language, how could I write?
By the end of last spring semester, I’d failed in my attempts to communicate so many times, and with so many different people, that I couldn’t figure out how to write a single sentence of either of my final papers. My dean’s office preemptively informed me that I wouldn’t be allowed any extensions, since I’d had the whole semester to finish my work already. So my professors had no choice but to give me Fs for my two favorite classes. I was put on academic probation. There’s a good bit more to the story, but it’s all history now.
Two weeks ago, I hadn’t written anything longer than 1-2 paragraphs in months and months. I was about to start a class at a nearby university (to be allowed back to college next fall, I have to show that I can handle writing papers again). And I read your post, and then I just…wrote stuff. For a long time (I’m a very, very slow writer). And then I organized the stuff I wrote. And edited it. And then posted it as that comment. Then suddenly you and, later, all these other people I’d never met, were telling me that what I’d written made all kinds of sense. That I’d communicated something valuable, clear, and real. In the last two weeks, I’ve had to write a couple of two-page responses on readings for my class. All were turned in nicely stapled, and on time. In my language. I’ve even written a letter, and a long email or two. I’ve written more in the last ten days that I did in a whole semester last year.
So, thank you. Your “playing favorites” gave me a chance to make sense again, and I have to believe that that’s important.
This was worth five years of writing this blog. Thank you for sharing it — and don’t stop writing.
Thank you for being a safe place for all of us. Reading Emma’s reply above and seeing what you did to help her writing…..well I’m just amazed at the number of lives you are touching and helping. Thank you, Jess!
We have three boys on the spectrum and we’ve dealt with many shades of the spectrum. It has been and sometimes still is very challenging. But even my little man who is nonverbal is able to display an amazing amount of joy and love for his world, for his family, even if it is overwhelming for him sometimes. How could that be overwritten by the fact that he needs more help, has more challenges to overcome?
So many write about the “severe” end of the spectrum being vastly different from the autism so many others write about. And yes, it can be. But at the same time there is a commonality – all three of my guys have a way of looking at the world that is both unique and exciting to understand. Even though my youngest is nonverbal, his expressions and joy in some things is amazing to behold, and he so completely lets you in if you are only willing to be a part of it with him.
The point: a few years ago I didn’t understand autism in the same way – I didn’t read what other autistic people wrote, I didn’t even know to look for their opinions. I didn’t understand it in the same way … because my experience was so vastly different.
In the same way, how could any NT person expect to understand autism the same way someone who is autistic might? We just can’t. No matter how much we’d like to. When we know better we do better, including listening to the voices that will most help us understand autism (the autistic point of view).
I value your blog and your Facebook community because you do this. You aren’t perfect – you’re only human after all (drat it!) – but you have the kind of respect for the Autistic community I want others to have toward my autistic guys and all autistics.
I think I respect you more because you are willing to transparently write about these times – because how do we learn if we never make mistakes?
Thank you for this. So much.