Saturday, August 13, 2011

Writing About Autism: Not for the Autistic??

An interesting, and disheartening, conversation:

Writing About Autism: Not for the Autistic??

The thread on About.com represents what many of us know about the autism "community" and its coherence: there is no single community, and there is no coherence of purpose, ideals, or beliefs. Insults and attacks are the norm.

Now for the "good" news: this isn't really an "autism" issue at all. If you want proof, read the comments on any political, technical, medical, or even hobbyist website. The vitriol and hatred seems to be universal, not an autism issue.

You want anger? Discuss Windows vs. Linux vs. OS X. Mention your great experience with a Chevy truck on a Ford enthusiast forum. I believe that debate has raged since the 1940s. Even "IRL" (in real life) people attack and insult over silly things. I had someone say, out of the blue, "You drive a Jeep? Really? How can you own such a thing?" I can't recall why it was mentioned — I was simply parking to shop at Target.

What is it with people? From where and why has all this impoliteness appeared in daily life?

We don't merely disagree with people, we allow ourselves to "hate" and "despise" people with different views, values, or beliefs. We can't accept that different views might be honest differences of both opinion and experience.

I do dislike charlatans taking advantage of families and there are men and women I do believe are dishonorable. But not most. I might not agree with a parent's choices, but I do not hate the parent. In fact, I try to understand why the parent is desperate and how desperation, guilt, and misinformation mix to lead to certain choices. The right approach is to explain my views, not insult and yell (virtually or in person).

The "self-advocacy" movement has to be careful. Many adults and teens with ASDs have had challenging experiences and carry with them some anger and bitterness. They need to explain that carefully to the broader autism communities. Not everyone understands how being treated horribly by others can result in a defensive, argumentative stance. Trust me, I understand being angry at institutions and people — but anger doesn't always produce the desired results.

And I tire of some parents and advocates telling me the obvious: I don't understand their lives. No, I don't, but I understand that your anger and vitriol is also harmful, especially when you attack adults and teens with ASDs trying to stand up and explain their experiences.

If you don't like what I write or what anyone else writes online, you can stop reading my blog along with any other websites with which you disagree. What is so difficult about moving on and reading something else? Or, if you are mature and thoughtful, you can read the sites with which you disagree to learn about and appreciate the views expressed. You don't need to post a reply or comment to sites you dislike; you can simply read and observe.

I don't read many blogs or forums. I don't have the time or energy for most of them. I read Stuart Duncan's blog from time to time, but generally I only stumble upon other sites when I see something interesting on Facebook or Google+ that seems worthy of reading. There was a time I read three or four blogs a week, but I don't have the energy for all the anger anymore.

As I mentioned, this isn't merely an autism issue. I no longer read the comments on most news websites, technical sites, or hobby sites. I read the main posts or the news headlines and that's it. One reason I like reading using my iPod Touch is that many sites don't include comments on the mobile devices. No comments means no anger, no hatred.

At least we can't blame "autism" for the lousy attitudes of the online community. "Flame wars" are not only as old as the Internet, but as old as human communication. I can do my best to be polite and not use silly insulting names for groups or people, but even honest disagreements have a way of deteriorating quickly.

Try to be polite. We will all fall short at times, but at least make the effort to listen and consider other views. If you do disagree, try to be nice about it while expressing your viewpoint. That's the least we can do.

13 comments:

  1. It's just so disappointing. People just don't know how to say that they disagree with someone without launching verbal attacks and questioning their convictions.

    It's gotten to the point where responses are intended to be as biting and damaging as possible to make a point... rather than to just engage in discussion.

    It's just so much worse when it's in response to someone with Autism, whom we've all been encouraging to be proud of who they are and to speak up when they can.... then bully them back into silence for not saying what we want to hear.

    I'll never understand it.

    Society just isn't ready to be understanding... nor accepting. Society just isn't ready to love on another.

    Society is still too eager to hate those they disagree with.

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  2. I've found many of my friends and colleagues do not associate with people of differing views or beliefs. They insult and attack, often thinking it is humorous, without realizing how damaging such attitudes are. This same trends happens within autism groups. Our tribal natures exposed, I suppose. It is disappointing and why I do not believe in Utopian idealism. The reality is that tribes form in the best-intentioned groups and communities.

    It is one reason I'm not very active in groups or causes. I work with some autism groups, but I'm not active in any. I'll speak when asked, but I don't want to be on organization boards or committees unless there's no other person available. Too much tension in life isn't healthy.

    I know some people really dislike certain organizations. That's okay, but we need to remember why parents, educators, and support providers join these groups. I don't agree with many of the larger groups, yet I have to appreciate these are people searching for answers. And those same groups need to respect my experiences and views.

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  3. It people could just understand that when they are being hateful, that they are shaming themselves and not the person they are speaking to.

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  4. It has gotten so that I generally don't read the comments anymore. It is not worth it. Whether it is a news piece or a blog. If there are more than 6 comments, a number of them will be people attacking each other and the story. I read the story to get what I can out of it and figure the rest is hot air. I guess that makes my comment a lot of hot air read by people with more time and patience than me!

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  5. I generally don't give advice or opinions to people in areas I have no experience in so none of this is much of an issue for me. I think if more people followed that simple rule (don't give advice or opinion on areas you have no experience in), the amount of acrimony on the net would quickly dissipate?

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  6. The parents have personal experiences and anecdotes, which some studies have suggested carry more weight in policy debates than science does. There were studies years ago of online support groups and the researchers found people in the groups turned to other members, even when the advice contradicted medical research.

    You learn that nothing trumps a parent's view — and researchers don't seem to be able to educate the public on some autism issues. Being an "expert" doesn't matter much unless you concur with what group members already want to believe. That's human nature.

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  7. "You learn that nothing trumps a parent's view — and researchers don't seem to be able to educate the public on some autism issues."

    Of course, as a parent, I support that idea. No one knows my child better than I do. Being a person with an ASD myself, I find my opinions matter little to online "autistics" as well when discussing why their views on autism parents are not very accurate, nor, for the most part, very accurate when it comes to ASD. So, I wholeheartedly agree that being an expert doesn't matter much unless you concur with what the group members already believe. However, I think there are exceptions to this when it comes to self advocates. The brightest exception is Temple Grandin. Her history is so well documented she commands immediate respect among most parents I think. She is also quick to point out that she isn't a parent and because of this, she doesn't pretend to know what it is to be a parent nor give parents the idea that she knows best. If all self advocates could be like her, they'd accomplish a lot more.

    Where we get into some disagreement comes from very high functioning self advocates, some with spotty to no diagnosis at all, telling parents of low functioning kids on how they should parent. They shouldn't even be in the debate at all.

    Parents are surrounded by deception in every facet of their lives dealing with and getting help and services for their child. From the fake and phony history of some "autistics" to the fake and phony practitioners of quack medicine. They are essentially on their own.

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  8. "And I tire of some parents and advocates telling me the obvious: I don't understand their lives. No, I don't, but I understand that your anger and vitriol is also harmful, especially when you attack adults and teens with ASDs trying to stand up and explain their experiences."

    I'm not sure if this was meant at the reference to that article from the young lady that was removed. I found it on a cache. I must say, as someone that is both a parent and a person with an ASD, you know, the kind where I was labeled retarded as a young child, had special services and all and then became a parent to a profoundly autistic child that I founder her article not only insulting to me as a person with an ASD but factually very inaccurate and her comments to people that were politely disagreeing with her I found were borderline manic. I'm quite surprised that you are supporting such people if that was the article you were referencing. The young lady has simply no idea what its like growing up with an ASD, which is quite obvious from her blog and has even less knowledge of the vast majority of the spectrum.

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  9. Didn't see the original post, didn't follow that thread on About.com. I only saw the current thread because someone asked if I thought my own blogging was useful or not.

    One of the things that did catch my attention was that one autistic blogger mentioned the blog was "therapy." If it is therapy, why not keep some things private? I don't publish every thought I have on a blog. Sometimes, I use my old-fashioned paper and pencil to store thoughts. I don't always get it right, but there are some things that do not need to be public and some that should be, but are difficult to express clearly.

    I think it is important to argue that self-advocates and parents need to be more polite -- and the rudeness is damaging. At the same time, it is hard to explain that, as I've found, because it is a challenge to explain when and how rudeness starts to cross lines and become truly damaging (or even bullying).

    When you try to express emotional responses, you risk being misunderstood. Trying to use generalities (since you have to be careful online) can lead to more confusion. How and when should emotions be kept private? I don't always have a good answer. My guess is that if you have doubts, it is best not to post something.

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  10. I think we could all be more polite. But people should never assume that their diagnosis gives them instant powers of expertise and they should never offer advise or try to tell parents how to raise their children. First you build trust and rapport. Then if someone asks for opinion, you give it.

    But someone that can type, put a sentence together etc. should never be offering advice on people that can do neither of these. I'm a person with an ASD, but I'm a parent first. From my experience, those without children don't live in the same reality. Its as though they are speaking and living in an entirely different world. It matters little how gently this is given as advice, online autistics, and I distinguish between online and offline because in my support groups, I've never experienced people with ASD as even remotely like those that are claiming an ASD online, you are an exception, generally.

    Most online autistics speak little about those that aren't in the mainstream, few that I know of live off the state or spent any time in a special education classroom. Only one I know online is actually living off SSI.

    The truly autistic (with a big A) are only being represented by parents online.

    I think Thomas McKean is perhaps the only ASD person I know online that I truly respect, outside of you of course. I wouldn't bother reading what you write unless I felt there was some merit to what you have to say. Your experiences, though I haven't told you, are nearly identical to my own, but I think I depart when you start to bring up parents because my experience departs from you there.

    Finding parents that agree with you isn't too difficult. Finding parents with a real diagnosis like me is extremely rare. Yet, I have no special insight either with other people with an ASD or other parents. Everyone is in their own dogma bubble.

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  11. The "dogma bubbles" or "echo chambers" are the norm online, and increasingly in physical spaces, too. There is an article on this in today's NYT that I thought summed it up: we are insulting ourselves from anyone not like ourselves.

    I don't interact with many "autistics" online. Some, but not many. Too often, it has not gone smoothly for me. My mother works with students diagnosed with classic autism (low IQ, low motor control, non- or limited-verbal). These children and their families have different needs and I'm often arguing for these needs in schools while parents with "less affected" (?) students are seeking money and services from the same decreasing funding sources.

    My wife was my financial support from 1992 until this year. Even now, I worry about succeeding at a job full-time. I might not be up to the daily routines, physically. Having been dependent on others most of my life, I don't confuse being an "independent" mind with being literally "independent" from others. Without my wife, I doubt I'd be alive. Without my parents, I know I wouldn't be who I am, either.

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  12. At some point, we as a community will have to cease bitter bickering and come together. While we are arguing and attacking one another we are losing a great opportunity to advocate for our autistic adults and children as a unified inclusive group and this single shortcoming is depriving a great many children and adults on the spectrum of services and supports they need to become more fully a part of society. I have been offended online by adults on the spectrum who may or may not be aware that a verbal or written communication was blunt or inappropriate. But I also understand that unless we as parents support self-advocacy and allow our young adults to speak and gain experience from making mistakes, they will not be heard. My son is profoundly autistic and nonverbal. I am trying to teach him to use an iPod to 'speak'. And I want him to be heard. I don't want to speak for him. He must be seen and respected for who he is. Not for who his mother says he might be. I speak for him now because he cannot express his thoughts quite yet. But I hope. We are parents. We should be the example of respect online. And if a writer is behaving as if they have no social skills, we must educate while allowing them to speak. We are the individuals with the social skills after all.

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  13. It is a shame that anger is easier, and more quick to respond, than other emotions.

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