Monday, March 30, 2015

I'm Not Autistic in the Woods

There is some division in the autistic community about whether autism is a disability or just a different ability. In my opinion, it is both.

I first noticed that my autism did not feel like a disability when I started hiking on weekends. When I am alone in the woods, I don't feel autistic, and by that, I mean disabled. Suddenly, my hyper-awareness of sounds, smells, movement, and light makes sense. It's as if my senses were designed to excel in an environment where noticing every little thing going on around me aids in my survival, rather than causing me pain and anxiety.

It made me start wondering if at one time, autistic neurology was the norm, and then as people started moving towards more densely populated communities, natural selection started to favor what is now known as 'normal' neurology. It does seems like a possibility. Because it seems that 'normal' people have very dull senses. They don't seem to be able to hear the buzz of the lights or notice that they are flickering wildly. They don't seem to notice that one light is pulsing bluish while the other is pulsing orangish, and it is extremely distracting because they are sitting side-by-side.

Allistics seem to have a need for constant social feedback, because they don't seem to be able to see all those micro-muscle twitches that we do, so they don't know when someone is paying attention to them. They have a constant need for eye contact because their world is centered around a culture of 'white lies' so they never know when to trust each other.

I started to think about a question I heard that asked, 'What is the difference between an plant and a weed?" The answer, "A weed is just a plant out of place." I often feel that way with my autism. I am very functional in the woods, or when I am alone working on code. In those times, I feel like my autism gives me superpowers. But in a social environment, or when I have to try to work in a loud, busy office I am definitely out of place and disabled.


Tuesday, March 24, 2015

You Are Not Your Child's Voice

Recently on Twitter we have been having some very good conversations in the #HighFunctioningMeans, #LowFunctioningMeans, and #FunctioningLabelsMean hashtags. It was a wonderful opportunity for the public to get an inside look at many ideas, perspectives and experiences they never really fully understood before. 

In the #LowFunctioningMeans hashtag, a mother was tweeting what low functioning means from her perspective. This upset a number of people. For one, we already know what the "mommy" perspective is. That market is fully saturated by Autism Speaks and the various mommy blogs. Secondly, the point of the hashtag was to tell the world what low functioning means, when you are tagged as low functioning. 

The tags were first-person accounts of what it is like to be labeled, and how useless those labels actually are in the real world.  We gave first-hand examples of how the label was not an accurate description of our abilities and disabilities. I think this is a powerful way of teaching the world that functioning labels are quite pointless.

When a number of people pointed out to the lady that we preferred only autistics respond with stories, she kindly bowed out with this apology. 


I don't think she intended this to be offensive. In fact, based off of her tweets she sounds like a perfectly nice lady. But this is a perfect example of why functioning labels need to go. Her child is 'low functioning', therefore, has no voice of his own. 

This just isn't true. This is what we are fighting against with the functioning labels. That child does have a voice. He has his own way of communicating. It might not be the way you want it to be, or it may come in a convenient form, but we all have our own voice, 

No one can ever speak for another person. Ever. If you have any allistic children think of when they were just starting to talk and mumbled a lot of gibberish. How often did you not have a clue what they were trying to say? How often did you try to translate for them only to have the child yell 'No!' because you got it wrong? 

Parents mean well when they try to be the voice of their child, but please understand you do more harm than good. Yes, it is true you know your child better than anyone else. But you can never truly get inside another person's head.




Monday, March 23, 2015

My Authority on Autism Ends at My Nose

Before it turns into a thing, I just want to clarify that I am just one woman with autism. Everything I write, I write from my perspective.
I am neither a researcher nor an autism expert. The only expertise I have is my own experience.

I can go online and talk about my experience and hear lots of 'me too's, and that lets me know that my experiences are shared by other autistics. But that doesn't make me any more knowledgeable than anyone else out there.

I just wanted to clarify this because although I did start Autistic Wiki, I didn't do it because I felt I knew more than anyone else. Nor do I feel I am the best person to be presenting all of the information. I'm not an expert on all things autism any more than the guy who built the local library knows all the information contained therein.

I just saw a need for an autistic safe space that serves as an information repository, and I am attempting to fill it.

In my opinion, there are a lot of expert advocates in the community who are writing blog, tweeting and using Facebook. I often link to their content and share their stories. I hope in time those people will start contributing to the wiki so we have a rich source of good information we can point to when the public asks, "What is...", "Why do you...", "How does...", Where can I...", etc.

Autistics Don't Understand Sarcasm

Is it true Autistics do not understand sarcasm? I think, like many things written about autism, this is a superficial view of a complex issue.
Big Bang Theory
 Sheldon's Sarcasm Sign

It is true that I often miss it when someone makes a sarcastic remark to me. I find this curious because I am actually very sarcastic myself. And I've noticed a lot of other autistics are as well.

So it's not true that we don't understand sarcasm. We understand it and use it ourselves. But for some reason we tend to miss it when others are being sarcastic.

Is this due to others doing sarcasm wrong? Or could it be related to the inability to read social cues, the change in tone and inflection that signal sarcasm?

I don't know what the answer is, but I would like to see people stop saying we don't understand sarcasm because it simply is't true. We may be less likely to detect sarcasm, but that isn't the same as not understanding it.

Tuesday, March 17, 2015

Autism Speaks' Google Problem, cont

Taking Advantage of the Natural Power of Google to Redirect the Conversation Back to #ActuallyAutistic Persons 


So I've been mulling it over all day at work. And doing a fair bit of snickering in the process when I imagine the look on the Wright's faces when search results start coming to US instead of THEM. This is actually the very reason i started Autistic Wiki (yes, I know I have a TON of work to do before it is useful). I started AW because I truly believe that if we work hard enough, search engines will start pointing to us rather than Autism Speaks when people do searches on autism.

In my previous post I talked about how i want to take advantage of Google's algorithms that return the results that get the most clicks and links. I am wondering what is the best way to go about this. What is most effective? When we start googling, should all results point to a hashtag like #ActuallyAutistic? Or should all results point to a website, or a blog post? Should we be googling lots of things, like 'autism speaks hates autistics #actuallyautistic', and 'autism speaks hates kittens', and 'autism speaks through #actuallyautistic', etc. Or is it more effective if we all agree to google the same phrase, such as 'autism speaks boycotted by #actuallyautistics'.  I think it is a good idea to have a hashtag in there since both Facebook and Twitter honor hashtag searches.

I also think it would be a good idea to add in the LIUB tag since some many people will be watching that tag between now and April 2nd. After that, i think we should take over the #autismspeaks tag, and whatever new tag they come up with this year.

Just bouncing some ideas around. I'm getting really excited about this because after watching the huge amount of participation in the #AutismSpeaks10 takeover and the outpouring of tweets in the #ActuallyAutistic and  #HighFunctioningMeans, I believe we have enough people to make a difference.

What do you think?

Autism Speaks' Google Problem

Bringing the power of the Internet to the people


Remember when Rick Santorum had a Google problem? Santorum made disparaging remarks about homosexuals, so with the encouragement of columnist Dan Savage of Savage Love, thousands of people started googling 'Rick Santorum [sexual reference]. And next thing you know, all Google searches regarding Rick Santorum start leading to sexual references, whether the original searched intended it or not.

Well don't you think it's about time Autism Speaks has a Google problem?

I think this April, in honor of Autism Awareness month when more people than ever are googling for autism information, this would be a perfect time to stage a coup. If we get enough people googling "Autism Speaks [...]" we should be able to have an effect on search results and lead people searching for information back to us, rather than the hate speech from AS.

It took Santorum years to recover from the Google incident. Now I know we don't have the same level of readership as Savage Love, but I think we have the power to make a dent in the results.

Now the question is, what phrase should we google?

Monday, March 16, 2015

Horrifying New App Aims to Teach Eye Contact

From the They Should Have Asked Us First file...

Can an app for Google Glass offer a path out of autism?



Out of Autism. Apparently we no longer Autistic people, we are people in autism.

Google Glass

A company called Brain Power presented their app ideas at the Autism Speaks conference at Google Cambridge recently. The app's goal is to teach children eye contact by rewarding the child with a cartoon character every time they look at a person's face. I am guessing these developers have not yet figured out that we are quite adept at focusing in front of a person, rather than on a person. So the app doesn't really do anything differently than what we already do.

First of all, anyone wearing Google Glass is probably going to get beat up. Autistic kids are already an easy target. So why would you put Google Glass on them?

Another app has a feature that "digitally accentuates the person’s eyes to attract attention, because autistic children are known to focus on the speaker’s mouth." Do these people think we look at the mouth because we can't find the eyes? We have a reason for not looking at eyes. They are too intense. So making an app that intensifies them further sounds like a nightmare to me. I am imaging it must be like being stuck in bad trip where all you see is eyes, eyes, eyes everywhere, and you can't escape. I couldn't handle that as an adult. I can' even imagine what it would do to me as a child.

They really should have asked us first

----

Can an app for Google Glass offer a path out of autism?
http://www.betaboston.com/news/2015/03/16/can-an-app-for-google-glass-offer-a-path-out-of-autism/

Brain Power
http://brain-power.com/#s-home

Wednesday, March 11, 2015

It's All In How You Look at It

Thank you for your perspective

Now go away. 

Lindt Chocolate Responds to #AutismSpeaks10 - Kinda

This is a screen cap of Lindt Chocolate vaguely responding to autistics in the #AutismSpeaks10 hashtag.

You will want to click to open in a new tab, and then click again to view full size.



Sunday, March 8, 2015

Why I Support the Night of Too Many Stars



The Night of Too Many Stars is a biennial telethon that works together with New York Collaborates with Autism (NYCA) to raise money for autism schools, programs and services.



Suzanne Wright is a member of the board of directors at NYCA. Well of course she is. She always has her fingers in the pie, doesn't she?

This is a problem. I thought about it for days before I decided I would go ahead and support it. Why? Why would I support something that the Wrights are involved with when I just spent two weeks tweeting in protest of AutismSpeaks10?

Because for one, I am realist.  Autism Speaks has been around for a very long time. The Wrights are, I assume, millionaires and have long ties to the media. It will be near impossible to ever get anything done and not cross paths with them from time to time. They are working with Google, which I disagree with, but I still use my Gmail and Blogger account.

Second, the money raised from this benefit goes to programs, schools and projects that helps #ActuallyAutistic people. They are doing a lot of good work, and showing that autistics are valuable members of society. They just need a few extra supports and therapies, sometimes.

This is the polar opposite of the message Autism Speaks puts out, and I want to support it. The entire two hour show is non stop laughter and fun. No one is talking about the tragedy of autism. The NTMS website specifically says they are not looking for a cure, they only want to help the people in the here and now.
"The only clinically proven treatment for autism is appropriate, intensive education"
-John Stewart
This year's event raised over $4 million in just 2 hours. A.S. spends about $4.6 million in family services grants in a year. To me, $4 million going to real people who need it, is worth supporting.

I feel like not supporting NTMS just because Ms. Wright has a minor role in the organization is a bit like throwing the baby out with the bathwater.

I don't expect, neither am I asking for anyone to agree with me. I don't think it is necessary to agree with everyone on everything. In fact, I have people I follow who I disagree strongly with on many topics, but I still read what they say because it keeps me grounded to hear another side of a topic. And it gives me an opportunity to ask myself if I really feel the way I do, or am I just being swept along by whatever wave is flowing this week.

I think this is a good exercise for everyone to engage in.

Tuesday, March 3, 2015

Autism Speaks Town Hall March 6th, 3PM ET

From their webpage:

"Autism Speaks leadership will take questions on the past present and future of the organization on March 6 at 3pm ET

"Autism Speaks co-founders Suzanne and Bob Wright along with President Liz Feld and 270 Strategies founding partner Mitch Stewart will discuss a decade of achievements and the future path for the organization. "

Call me cynical. That's ok. I am.

I would love to think they would actually answer some hard hitting questions, but the reality is it will never happen. None the less, we have to make our effort so once again we have "proof" that they refuse to hear our voices.

Screen cap everything!

Michael Williams from WPTV will be the moderator. The event will be a live webcast and is expected to run about an hour and a half. Questions are to be submitted via email or Facebook.


Info You Need So You Don't Have to Give Their Site Additional Hits

Michael Williams: @MWilliamsWPTV5
Questions via email: townhall@autismspeaks.org
Webcast address: http://autismspeaks.org/townhall
Hashtag: #AStownhall - be aware, this may change if we take this one over too.

I will be at work during that hour, so sadly I will miss it. I am hoping it will be available on Youtube later.

Sunday, March 1, 2015

Celebrate the Small Victories: AutismSpeaks10

Autistic Advocates Silence Autism Speaks' Self Congratulatory 10 Year Anniversary Party

This last week and a half has been a busy one for autism advocates. On Wednesday, Feb 18, Autism Speaks asked their Facebook and Twitter followers to tell them how AS has touched their lives in the last 10 years using the hashtag #AutismSpeaks10.


Well, they really ought to know better after the disastrous #mssng campaign, but they did it anyway. 

Autism Speaks managed to find a small number of supporters who dutifully replied that AS had made their life better. The tweets tended to be like those vague, half-hearted attempts at being part of the group when you just want to play along, but you don’t actually understand what you’re supporting, or who did a good thing.



By contrast, Autistic advocates took over the hashtag, adding their own #ActuallyAutistic tag, and spent the next week or so destroying the public myth that is Autism Speaks. The tweets from autistic advocates were more passionate and specific. It was clear these were personal stories that mattered, not someone dutifully replying to a request for submissions.





Autism Speaks did what little they could to cull the rare glowing Tweet, and retweet it. But soon that proved fruitless, so they started using the #AutismChampions #AutismChampion tags. Naturally, we followed.

For nearly two weeks, autism activists have been speaking about against Autism Speaks using the hashtags #ActuallyAutistic, #AutismSpeaks10, #AutismChampions, and #AutismChampion. It was a sight to see. I think Autism Speaks still, after all these years, underestimates us and doesn't realize our commitment to seeing this through.

The Media Reports

A small number of media outlets picked up the story. On Feb 23, BuzzFeed ran a piece called Autistic People Spark Twitter Fight Against Autism Speaks . A few days later, Autism Daily News published Neurodiversity Advocates Use #AutismSpeaks10 to Express Their Anger. And then IT happened.

MTV Tries Their Hand at Reporting

The whole story is captured perfectly on the Raising Rebels Souls blog. To summarize, MTV contacted Amy Sequenzia via the Boycott Autism Speaks' Facebook page and asked for a quote as part of the story they were doing on the #AutismSpeaks10 hashtag takeover.

Amy agreed to work with them if quote would be used in full and not get edited. MTV agreed, so Amy provided a good quote for the interview that talked about how Autism Speaks has silenced autistics all these years. She went also touched on the hateful, fear-inducing language they use and their connections to torture at the Judge Rotenberg Center.

The piece was posted briefly, and then the part of the quote about the Judge Rotenberg Center was edited out. Amy and others cried foul. MTV responded by pulling the entire article.

So now, on top of the 4 hashtags we have been owning, advocates are also tweeting to @MTV, @MTVnews, and @everydaycaitlin, demanding an answer. 

As of yet, none has been forthcoming.

Our Weakness is Our Strength

Some might look at this as a defeat. "They" did it again. They silenced us again. The biggest, the strongest, the one with more money, always wins.

I would ask that my fellow advocates look at this though a different lens. I view this as a small victory. The fact that MTV found the story interesting enough to pursue in the first place is progress. And then they actually published the story with a very damaging, very controversial quote is progress. We can only guess that MTV was bullied into taking it down. And that too is progress. Because it happened in public. All of this happened out in the open where everyone can see the truth. Everyone witnessed first hand Autism Speaks ignoring us in #AutismSpeaks10 hashtag, and then moving to a new tag, and then apparently scaring MTV enough into dropping the story.

All of this happened while people were watching. Many people who, for perhaps the first time, saw that we are telling the truth, not just a bunch of Internet trolls trying to "ruin a good thing."

I encourage Autistics to keep at it. Keep speaking out. Keep speaking to the media. Keep screen-capping everything important, so we have proof our words are true.

And celebrate those small victories. Over time, those small victories add up to big victories.



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Autistic People Spark Twitter Fight Against Autism Speaks
Virginia Hughes, Feb 23, 2015, BuzzFeed

http://www.buzzfeed.com/virginiahughes/autistic-people-spark-twitter-fight-against-autism-speaks

Neurodiversity Advocates Use #AutismSpeaks10 to Express Their Anger
Laurel Joss, Feb 27, 2015, Autism Daily Newcast,

http://www.autismdailynewscast.com/neurodiversity-advocates-use-autismspeaks10-express-anger/23578/laurel-joss/

Why @MTV Stood With #AutismSpeaks10 Instead of Autistics
Heather Clark, Mar 1, 2015, Raising Rebel Souls

http://raisingrebelsouls.blogspot.com/2015/03/why-mtv-stood-with-autismspeaks10.html