When does intervention cross the line from helpful to harmful?

As most of you know, I’ve been asking people to boycott Autism Speaks and their major sponsors such as Home Depot and Toys ‘R’ Us.  But I want to know in such matters that I’m making the right stand. As a rule I try to always entertain the possibility that I’m wrong and listen to opposing views with an open mind. But on something like this I feel I need to do a bit more due diligence so in my spare time I’ve been reading through the Autism Speaks web site and materials. Tonight I downloaded a couple of their toolkits.  Sadly, I found nothing to dispel my negative views of that organization. To the contrary, the “toolkits” reveal the extent to which the organization’s bias is ingrained.  After reading, I’m even more concerned for the welfare of autistics under their treatment than I was before.

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How do we make people want to change? – Lynne Soraya

Over at her Psychology Today blog, Lynne Soraya asks “How do we make people want to change?” For me the answer is “we don’t”. One of the biggest problems I see today is this epidemic of worrying so much about how to make other people change that we forget to work on ourselves. If we find we can’t persuade people to act the way we want, then we try to use legislation to coerce the desired behavior under the weight of law. But none of us is so good that there’s no room for self-improvement. The one place where we can REALLY make a difference is to improve ourselves. Sure we can influence others but not nearly as efficiently for the same amount of effort.

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Form, function and authenticity – an essay on facial hair

GraveyardFallsHeadShotWhen I’m in the right frame of mind, Internet trolls are an endless source of amusement. Unfortunately, that isn’t often and the rest of the time they just make me fear for the future of the human race. I practice what I believe is a pretty tolerant position regarding comments on my online writing and try to leave everything up that isn’t outright spam. I can take some criticism. In fact, since I don’t plan to have to independently recreate all the wisdom that came before me, I more or less depend on criticism to fuel personal growth.

But there’s criticism and then there’s batshit crazy.  I’ll delete a batshit crazy comment in a heartbeat.

What I need to remember to do though is to let them sit in moderation a day or so before deleting them.  Case in point, one I deleted a few weeks back that I eventually came to believe was actually a teaching moment in disguise. I don’t have the original text anymore so I’ll paraphrase.

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Intense world, in theory and practice

OverloadA few days ago I stumbled across an article describing Kamila and Henry Markram’s Intense World theory of autism (more formally described in their own article).  This, to me, was like finding the key to unlock a treasure.  Intense World explains so well my experience of autism in a way no theory based on sensory deficiency can.  Although I do know there are aspects of human behavior to which I am impaired (face recognition, body language, cognitive empathy), that explanation only goes so far and leaves much unanswered.  However, the communication deficits are the most obvious symptom to many people’s eyes and I believe that may be why the Intense World theory can be counter-intuitive. We’ve been trained to look the other way.

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My position on #BoycottAutismSpeaks

There’s a bit of a debate in the autism community concerning Autism Speaks and today I got pulled into a heated Twitter discussion on it.  It’s a bit ironic that a group of people characterized by difficulty communicating with the majority population would choose to have this discussion in 140 character bursts but hey, that’s just how we roll.

The thread that was picked up today began with a Tweet from John Robison asking whether we could advocate for something instead of against something.  This caused some backlash and I jumped in to try to find some middle ground.  I don’t agree with John that this can be done without bringing attention to the negative effects of Autism Speaks but neither do I agree with the many folks who would simply destroy Autism Speaks today if it were possible to do so.

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The humility/noteriety spectrum

Athena's Daughters anthology projectThe first part of my life could be described as a long string of attention-seeking incidents. Some of them, like getting bitten in the head by a big dog at the age of 4, didn’t start out that way but reinforced the sense of validation one gets from being the center of attention. Later as a bullied school student, I became the class clown as a way to gain acceptance and ratchet down some of the violence. You get to be the center of attention either as the class clown or the bully victim, and people are laughing at you either way, but one is a noticeably better experience than the other. Can you guess which one I preferred?

Being bullied and being class clown both mean more social contact, but only up to a point. What I craved most was actual friends. The kind that stand by you, clue you in gently when you are clueless and contribute to the relationship in proportion to what they take. Time after time those people I thought were friends turned out to have a hidden agenda in which I was a convenient pawn. The more I craved human connection, the more deeply I was wounded. Eventually I shut down and stopped seeking friendship. Since I did not also stop craving it, this was a particularly miserable time of my life in which I was always depressed, often suicidally so. Deep within me lived a tiny spark of defiance that did not want to give my tormentors the satisfaction of my suicide. That spark kept me alive when nothing else mattered.

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Tweetreach report for #BoycottAutismSpeaks

Tweetreach report for #BoycottAutismSpeaks

Tweetreach report for #BoycottAutismSpeaks

It’s always interesting to me when seemingly unrelated things intersect. Last night I was reading up on some writer web sites and someone mentioned Tweetreach, a service that I’d never heard of. So I fired up an account and plugged in my name and the names of several friends. The free report is interesting but I wanted to see how the $20 paid report compares. To make good use of the money, I plugged in #boycottautismspeaks, a hashtag I knew to have had a lot of recent activity and which I was curious about. Wow – we reached a lot of people. I’m making the report available because some of you might be interested in that kind of analytics. Monthly pro accounts are expensive but individual reports are only $20 and they encourage you to share them so we always have the option to chip in a few bucks apiece if we want to track a future campaign. Of course, sharing this will increase my Tweetreach. 😉

Tweetreach report for #BoycottAutismSpeaks Dec 27 2013 – Jan 4 2014(2mb PDF)

Update 18 January, 2014: I discovered Tweetreach a bit to late to capture the December event in its entirety. In my second attempt, capturing the January 14th event, I discovered that in addition to the 7-day time limit, there’s also a 1500 Tweet limit which, by the time I ran the report, doesn’t capture the entire day.  Next time I’ll run it very soon after the event ends.  However, the data from the 14th may be useful just the same.  That report is now online here:

Tweetreach report for #BoycottAutismSpeaks January 14-18  2014(3mb PDF)

Update 24 January 2014: Well, I ordered the report at 1am on the 24th but the 1500 Tweet limit only goes back 12 hours. On the one had it kinda sucks in that we didn’t capture the entire day. On the other hand, 1500 Tweets in 12 hours? That’s awesome for our community!  It would be possible to purchase multiple reports but they would not provide a consolidated picture. Instead, I’m looking into prices for 24-hour snapshots with out the 1500 Tweet limit.  More info as I know it. Watch @tdotrob on Twitter for announcements.

Tweetreach report for #boycottautismspeaks 24 January 2014 (3mb PDF)

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A working definition of hate in three acts

Yesterday I participated in a virtual march on Autism Speaks.  There was a rather large outpouring of tweets and Facebook posts. I thought it would be great if we had some news coverage so I looked up the news staff at WBTV and posted to all their Facebook pages, tweeted to them and sent them emails. I wrote that Autism Speaks “demonizes the very population it purports to serve. They bully us through online hate speech and divert money from charities that actually serve our community.” I followed up with a link to http://boycottautismspeaks.com where there is a great deal more detail on the issues with Autism Speaks.

One of the news anchors asked me to remove the post on their Facebook page saying it was “super inflammatory.”  During the event a Twitter participant within the Autism community called for a more nuanced discussion and cited the characterization of Autism Speaks as a hate group as an example. Being called out by two people I respect made me stop and ponder whether “hate speech” and “hate group” are accurate characterizations off Autism Speaks. I’ve tried to capture those thoughts here.

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US Autism Caucus activist directory

Yesterday in a Twitter chat with Lynne Soraya (you can visit Lynne on Twitter or Facebook), several of us were discussing how to compile a directory of the US legislators involved with the Autism Speaks to Washington event. Many of us feel that Autism Speaks doesn’t speak for us and the directory is intended to make it easier for us to speak with legislators on our own behalf.

Unfortunately, nobody was able to find a directory of speakers or program listing during the chat.  However I was able to locate the Autism Caucus membership roster posted on Representative Mike Doyle’s web site. I agreed to compile the contact info for all legislators on that roster.

Fortunately, I have some friends at NewGov.us who were able to provide an extract of their database for me. This and a little Perl scripting produced a nice, formatted directory of all members of the Autism Caucus as of November 13, 2013. Pick the version that is easiest for you to deal with:

I’m pretty sure I missed a couple names because Rep Doyle has 114 listed and I have 112 or so.  I’ll go back and reconcile the list when I get a chance, but in the meantime if you find someone not there, please let me know through the web site here, tweet to @tdotrob or find me on Facebook.  Also, if anyone has a link to the Autism Speaks event program or a list of legislators who spoke there, please also point me to that and I will update this roster.

In the course of getting the data to make the directory, I had a chance to see some of the upcoming features of NewGov.us.  It is already useful, if perhaps a bit rough.  However with the User Interface changes and new features that I saw, it promises to help citizens take back control of their government.  The team there are busy building like crazy and hope to have the site ready for wider launch in a month or two.  I will post about it when it’s ready and I hope you will try it out then.  Until then, if you sign up and try it out they would love your feedback but remember it isn’t launched yet so be forgiving if you find anything broken.  I have found the team there to be very responsive.

Let’s get some real autistic voices heard in Washington for a change.
Let’s let our autism speak for itself.

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Firesigns, warning signs and better times

The Firesign Theatre

The Firesign Theatre

When I moved out of home at the ripe old age of 17, I’d already been a Firesign Theatre fan for several years and was spending all my spare change on their albums.  I’d managed to collect Waiting For The Electrician or Someone Like Him, How Can You Be In Two Places At Once When You’re Not Anywhere At All, Don’t Touch That Dwarf Hand Me The Pliers, and Everything You Know Is Wrong and memorize them all.  My ability to memorize the albums was surpassed only by my ability to annoy people by responding to almost any conversational cue with a Firesign quote.  But I was still about 30 years from my Asperger Syndrome diagnosis so nobody knew why I was like this, only that I seemed to be possessed by some rather eccentric demons.  But none of us would have predicted that my Firesign obsession would put me in mortal danger and then give me a reason and the strength to set my life back in order.

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