Thoughts on Language and Responsibility in Blogging about Autism

There have been some posts I've read recently that raise the issue of the right of authors to be true to their experiences and the responsibility an author has to a wider audience. I've been chewing on this, weighing it. A lot of what we do in the online autism blogging community is reactionary; we respond to other people's words. Sometimes we skewer them for those words. I've done that here; this blog started as a response to the words that Age of Autism put out there. Words matter; we all know that. Words start wars. Words end them.
Words began relationships and tear them apart. Words build people up and rip them apart.

Many of us stand up and write in response to the R-word campaign, that the language must change, but that without a change in the sentiment driving the language, nothing really changes.

So it is not just words then, obviously, that do this, but the sentiment behind them, the honesty with which the words are offered and the receptivity of the person hearing those words. Sincerity on the offerer's part can be rendered moot by the skepticism of the receiver. Wiio's laws regarding communication are always worth keeping in mind.

It would be remiss to not let readers know the pieces which have made me think about the responsibilities we have when we write, both to ourselves and our own experiences and to the community at large. Failure to consider these twin responsibilities in tandem leads to more conflict. We hear in this community a lot about empathy and how autistic individuals lack it, with many autistics and families stepping forward to say that's not true in their experiences. The reality is that we are all occasionally empathy-impaired. We are all occasionally self-absorbed. It is not the complete measure of a person that we have an occasional lack of empathy and  occasional self-absorption (which go hand-in-hand), but if we do not know when to shake that off and make amends, well, perhaps that's the bigger problem. What's important is that these kinds of pieces, the range of experiences, offer us the opportunity for reflection.

Rachel Cohen-Rottenberg's recent piece "On Language and the Spectrum of Experience" calls a mother blogger to task for not considering her autistic son's perspective when she relates a late night experience. Always thoughtful, Rachel's concern that the autistic person's perspective be related, be considered, that bloggers be responsible for their language use so that stereotypes not be perpetuated is clear.

As writers, we are responsible for our words, and out here on the internet, those words live on, ready to impact and influence others and even bite us in the rear. We put those words out there, and we have to accept that when we do, we open ourselves to criticism and disagreement, and there's nothing we can do about it. So some thoughtfulness about those words we write for the world to see before we hit publish is probably a good thing. We should be responsible with our language while still being able to write honestly. Or we should have thick enough skins to accept that once we put it out there, we lose control of the message.

Another writer admonishes his critics to quit reading if they don't like his words. It's a short piece, and readers familiar with Rob Gorski's blog Lost and Tired will know that his blog is about the difficulties and burdens that autism is for his family. You could not get farther from Rachel's blog than Rob's. 

I've waded into these things before, argued that we have a responsibility to be sensitive to how individuals on the spectrum are portrayed. I've argued that we must be careful about how we present our stories so that we minimize potential harm. I think it's harmful to write things like the light went out of the child's eyes, or that the child died. Dude, it's autism, not death. The reality, though, is that the parents who write these things are hurting, are not coping well, and may be dealing with things we cannot even begin to imagine. How do we help them?  Perhaps that is something we should consider before reacting. I know that there are things I would do differently now, reactionary pieces that in hindsight, were too judgmental. 

The other thing that I think is not said often enough is that our community has a tendency to lump every behavior under autism, so that uncontrollable rages get labeled autism. Not everything is autism. Sometimes it's intermittent explosive disorder. Sometimes it's psychosis. Sometimes it's bipolar or schizophrenia or full-blown OCD. Or generalized anxiety disorder. 

I don't think that things are going to change in the community; even this post is a reactionary post. It's what we do; it's an extension of a conversation that is international in scope and diverse in ideology. We each bear responsibility for the words we share with the world. 

These two posts, read together, reflected on together, represent two poles in our community, and offer the chance for a wider dialogue on how to honestly share our stories while being responsible, or for that matter, a real dialogue on whether we owe the wider community any consideration when telling our personal stories.

To dialogue, to reflection, to diversity, to community.


kathleen said...

Well said...:) This is one of the reasons that I have stepped away from blogging recently. There are many points of view-many different perspectives and experiences. Although I don't always agree or care for some of them-sometimes I take things too personally and THAT is a mistake.

Socrates said...

Rachel Cohen-Rottenberg happily endorses the use of the word “Aspie” - Personally my Aspie-dom involves suicide attempts, wrecked relationships, poverty and victimisation. Being labelled with the diminutive of a pathogical condition is volcanically provocative and hurtful.

I politely commented on this fact on Bolland's Shiny Happy Aspie post. She declined to publish my two comments.

Always thoughtful, Rachel's concern that the autistic person's perspective be related, be considered, that bloggers be responsible for their language use so that stereotypes not be perpetuated is clear.

Kim, forgive my French but you are (in this part at least) talking shit.

melbo said...

Kim, I completely get where you are coming from. I'm sure there are people who have a problem with stuff I've written or said. I own it and that's the least I can do but I hope that people can see the intent behind it.

K- floortime lite mama said...

very true - great post
The point I think about a whole bunch of things that get put with the spectrum - is an especially important one - which is always forgotten
I think there can be and should be a whole bundle of diagnoses

I love Rachel

sharon said...

I agree. There is so much emotional baggage bought to the table each time any of us speak about our personal ASD experiences, and in particular when we compare them to how others are framing up their stories. A lot more compassion for those who are doing it tough, both on the spectrum and those who love them, would go a long way. But we also need to have these debates about the power of narratives. As long as we stay respectful, I think there is enormous capacity for understanding and mutual support.

Anonymous said...

I just read through Rachel's post and the many comments and I think a big part of it has to do with being clear when you are sharing your own experience versus when you are extrapolating to make a general statement about autism. Your experience is yours, but we do have a responsibility when representing autism through our words.

It is also hard to always remember to include the person with autism when writing a personal account. I just left a comment on another post about how wonderful it is that my son has not been as aggressive lately. Although it IS wonderful for me, I also mean by that that it is great to see him feeling happier and more relaxed and less anxious about life in general. If he weren't showing those positive signs, or if he were showing any negative reaction to the medication he is taking, it wouldn't be a good choice to continue the meds just to keep the aggression down.

I realized after I posted the comment that it could sound like it's all about me, when he is the primary factor in that decision.

Anyway, thanks for sharing this. I appreciate your writing.

Jen said...

I think it's dangerous to condemn a blogger for one post. I know there are things I blog about which are completely about my experience, yet there are other times when I blog about the pain I know my daughter feels. I am sure someone could extrapolate one post from my blog and tear me down b/c I come at the topic from only my point of view. Does that mean I don't understand my child? Does that mean I don't see her pain or her beauty or her genius? No. Tunnel vision is not a good thing, on either side.

D. S. Walker said...

I agree with Jen that tunnel vision is not a good thing on either side, but I read Rachel's post and as the mother of teenager, I would appreciate someone pointing out a blunder in my post that could offend someone on the spectrum. I am very sensitive to generalized statement too as she is becoming a young woman and I do not want anyone to assume she is violent or lacks empathy.

D. S. Walker said...

Oops, it should read "generalized statements."

Anonymous said...

Hi Jen,

I'm not sure how you're reading my piece as a condemnation of the blogger. I critiqued what she wrote; I did not critique her parenting, or her intentions, or anything about her at all. In fact, in the piece, I praise her parenting and honor the voice of her experience.

When you write a post and talk about how difficult things can be for you as an autism parent, I honor that. Of course I do. You have a right to speak to that, and if that's all the blogger had done, I wouldn't have had a hard time at all. As I said in my piece, I *want* to hear about everyone's experiences. But I worry about it when people generalize from the specific and make pronouncements about autism in general. I have as hard a time with people who say "autism is a gift" instead of "my experience of autism is a gift" as I do with people who say, "autism is a curse" instead of "my experience of autism is a curse." In both cases, people are making a huge leap from their experience to "what autism is," and for reasons I lay out in my piece, I find that very troubling.

I'm also not sure where you're seeing the tunnel vision here, since many times in the piece, I express empathy for everyone's experience; in fact, the whole piece is a plea for people to not overgeneralize so that everyone's perspectives can come clearly into view.

KWombles said...

Thank you for the dialogue. I'd like to offer some clarification, as a dear friend of mine interpreted that I was in favor of attacking the parent.

I am not; I regret that there are pieces I've written in the past that might have unfairly condemned a person for one piece (as Jen mentions).

I would do things differently now; having the directory and making it inclusive and then working to read that diversity of voices has altered my initial impressions of the community (which was neurodiversity versus AoA).

However, I recognize that I've put the words out there, and that those words are fair game; that was one of my points: once the words are posted, we have to live with the reality that our message is no longer under our control. That's not the same as saying, "sic 'em!" It's a reminder to myself and others that once our words are out there, they're out there. In my piece, I also wrote about recognizing when our words have been wrong or ill-advised and being able to make amends (well, trying, anyway).

The unfortunate truth is that we cannot avoid offending someone, we cannot prevent someone from misinterpreting something we've written.

I think for me, having had my own pieces dissected, the take away has been that I can't stop others from writing about me, can't control what they write, just as AoA folks and other people whose writing I've covered can't stop or control what I've written about them. Wading through the critical pieces and seeing if there's something to be learned from the criticism or if it can be ignored is not easy, and I admit there's some people whose opinions I don't value who I will not read.

I personally think I have different responsibilities when I am sharing my personal story (those responsibilities are to my children and family) and when I am extrapolating that experience to autism in general or writing a science-based piece.

I think we'll all make our own decisions about where our responsibilities lay. And hopefully, we can have thoughtful exchanges about those differences. As for me personally, my thought is that Rob's call for his critics to stop reading him has some merit. It's his reality, and it's obviously one that is hard, overwhelming and without adequate assistance. He has a right to share his reality, his experience of autism. Autism is a spectrum, and our children are often dealing with co-morbid conditions. Some families will have harrowing experiences and they ought to be able to share that experience honestly.

Do I think that Rachel's piece about the mother had merit? Autism does not destroy marriages; the research bears out that the divorce rate is no worse than it is for those not dealing with disability. That's a valid criticism. Dealing with autism as if it were a nebulous, demonizing outside agent probably isn't a good way to deal with the situation and it unfairly stigmatizes individuals who have been diagnosed with autism.

Anonymous said...

Here, to me, is the difference between Rob's blog and the post by Prudence that Rachel criticized in her last post: I went to Rob's blog and the first sentence I read is "This is my Reality Autism statement. What will yours be?" In another post he calls for "accurate and multifaceted" accounts of autism. While Rob's blog does present a more negative and difficult portrait of the life of a family affected by autism than some others, he couldn't be clearer that he's only being straightforward about his feelings and the experiences of his family. At least in the few posts I've read so far, he's not making catastrophic, generalized, authoritative statements that "autism is......" something dark and horrible that robs affected people of humanity. His three kids all have very different experiences of autism and he sees that, and that there's beauty along with all the hardship. To say that HE feels lost and tired is a world away from the reckless misuse of language of the sort that Rachel was criticizing.

KWombles said...


Yes, there is a world of difference between Prudence's post and what Rob writes, which is confined to his family's experience, but he still obviously gets enough criticism that he felt the need to write that post.
I've read all the comments now on Rachel's blog, read the original piece, read Prudence's defensiveness and dismissiveness of the comments left at her piece. Had she restricted her piece to just the portion about her sons, I think it would have been a good piece. It's when she went into the "autism is" and then tied that to the mother who let her autistic son die that she really blew it. Although, she's still entitled to write her beliefs, to state her opinions. And anyone who sees the holes in the reasoning, the factually incorrect statements, the damaging stereotypes is free to point them out.

It was disappointing to read some of those comments and difficult to read her justification of the mother denying her son medication that most likely would have saved his life.

farmwifetwo said...

I appreciate the conversation and the editting.

I cannot open Rachel's post and over the years have read many written by "do gooders" and found them to be nothing more than a slap at the rest of us. It is one of the many reason's I closed my blog years ago - back in the "Hub" days. I have journals full of the "realities" of autism in our home. Should my son read it one day I will not apologize for having written it down. He will have to learn to deal with what was and what is at that time.

People should be allowed to post what they wish, when they wish to do so. You can accept it or as Rob says "move on". Many will take it as an opportunity to take a swing at that person... since you weren't there when that person was in distress... I recommend deleting those posts before you post them. All you see is a tiny bit of the reality... you don't see the big picture.

As Claire (life with a disabled child) wrote http://severedisabilitykid.blogspot.com/2011/07/damned-if-you-doredirect.html I recommend you read the last paragraph.

Be damned if we do.....

Anonymous said...

Kim and chavisory: Like you, I don't have an issue with what Rob is doing, because he is speaking to his own experience without sugar-coating anything. That's exactly what I value about first-person narratives: you get the good, the bad, and the ugly, and that all needs to be brought out. (It's for this reason that I read Harold Doherty's blog and blogs by other parents of severely disabled kids.) If Rob gets criticism from people who think he's painting too dire a picture, that's really not his problem, since he's painting a picture of his own life, and he is eminently qualified to speak about it. Many autistic people get the other side of that criticism all the time -- "You're painting too rosy a picture..." --- when all we're doing is talking about how we understand our lives and how we process our experiences.

If Rob were making the leap into "my autism reality is everyone's reality," there would be a much more objective and valid basis for criticism. But he's not doing that.

Lost and Tired said...

I really like the dialog here. While I haven't read the other post's, so I can't comment, I want to make a few things very clear.

My personal stance on Autism is that it's different for every single person and family. While mine is less common than most and extremely complicated, it's my personal experience. While much of what I write is less positive,my blog is a window into our lives, and while you read it, we live it. I also make it a point almost every single day to share the victories as well. I have my "Today's Victory" posts, which have been adopted by other bloggers as well. I also have my, "The Lighter Side of Autism" posts as well. These are all very positive posts.

I go out of my way to encourage people to share their personal stories and experiences because, in my opinion, there is no better way of spreading Autism Awareness than by relating your personal story. I feature guest bloggers all the time. They share with my readers what Autism is through their eyes. In fact, Jen was one of the first stories I featured. :-) Hi Jen......

Yes, people's stories will be very different from one another's but there is overlap. The whole point of sharing our stories is to show the contrast. People need to see that Autism isn't a one size fits all type of thing.

By sharing our stories, the good, bad and ugly, we are helping the world to see how truly dynamic Autism is.

What frustrates me is that people, other parents in the Autism community will attack me and many others. because we use the word "Autistic" when describing our own kids condition. While I also say "with Autism" as well,my choice of words truly depends on the context of the conversation.

When my kids get older and have a preference, I'll respect that, without question. However, I will always refer to my kids by their names and introduce them as such. Aspie, with Autism or Autistic, it makes no difference. They are still Gavin, Elliott and Emmett to me and they always will be.

Until that day, I'm a parent trying the navigate a world that is foreign to me, in the very best way that I know how. :-)