All opinions and views stated on this site belong solely to Corina Lynn Becker, and do not represent or reflects the views and opinions of any organizations, unless otherwise specified.

Friday, October 23, 2009

Don't Write Me Off Campaign

As has been noted on lbrb, yesterday the landmark Autism Bill passed its final stage in the House of Lords today to become England’s first ever disability-specific law, and once it receives Royal Assent, will become the Autism Act. (I like how simply things are called over there, Autism Act, Employment and Support Allowance, National Autistic Society... just beautiful)

Now, the National Autistic Society, who drafted the bill on behalf of many autism charities, is also demanding that the strategy tackle the low numbers of autistics who are employed, and making sure that autistics are supported in applying for work, benefits and in the workplace through their Don't Write Me Off Campaign.

From the About the Campaign page on the site:

We followed the experiences of a group of people with autism as they applied for Employment and Support Allowance (the new benefit for people who may find it harder to get a job because of their disability), and surveyed a group of adults about their experiences of work and applying for benefits.

From this research, the Don’t Write Me Off campaign found that of the people we surveyed:

  • just 15% have a full-time job
  • one third are currently without a job or access to benefits
  • 79% of those on Incapacity Benefit want to work.

The experiences that people with autism have shared with us show that, sadly, the majority are not getting the support they need to find a job and many more cannot access the benefits they need to live on.

However, it doesn’t have to be like this. There are clear and often simple steps that governments across the UK can take to deliver real change for people with autism. Adults with autism need:

  • Employment and Support Allowance to work for them
  • Jobcentre Plus staff to understand and meet their needs
  • a national strategy to transform access to employment.

With your help, we can make this happen. Please join our campaign, to help make the system fair for people with autism.

As some one who would love to see this sort of support, strategy and campaigning in my own country, who is on social assistance and is applying for social housing, I fully support this campaign. I know there's not a lot I can do from this side of the ocean. However, I wish to do what I can.

Please support the Don't Write Me Off Campaign.


Wednesday, October 21, 2009

Amy Wallace and An Epidemic of Fear

I just sent Amy Wallace, the writer of the Wired article "An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All", thanking her for writing the article.

In my opinion, it is a straight-forward, strong no non-sense piece that examines the skepticism surrounding present-day vaccines, with a focus on Dr. Paul Offit and the threatening reaction from a part of the autism community, including the personal threats made by phone and mail, and the attacking comments about him by celebrity anti-vax spokespersons. It also takes a look into the facts about vaccines and the claims of the vaccine-causation groups in an honest and clear manner.

As Kim has pointed out on her blog post Doing Something Right: Conniptions at AoA posts have been made on AoA encouraging harassing Amy Wallace for her piece, which I need to point out, does nothing to over turn the view of them made in the piece. However, given the amount of research Amy Wallace has made into the situation, I don't think that AoA will be too successful in intimidating her. (Yes, I know that AoA isn't on the list of anti-vaccine sites that Amy lists, but honestly, I wouldn't be surprised if many of the membership is the same).

Either way, I applaud Amy Wallace for her strength and courage in the article, in writing a well documented and researched piece that doesn't hold back in presenting facts. Congratulations and thank you!

Saturday, October 17, 2009

Another critique of Ginger Taylor

It was pointed out to me that Mrs. Ginger Taylor has made another uninformed post on her blog Adventures in Autism, in the form of her post Redskins Cheerleader Ambassador Suffers Neurological Damage from Flu Shot.

Now, I'm not refuting that Desiree Jennings is suffering from Dystonia. It has been noted that sufferers of Dystonia have near continuous pain, difficulty with mobility due to cramping and involuntary muscle movement.

What makes me question Mrs. Taylor's claims to be an educated woman with a Practicum Master's of Clinical Counseling is her question

So if this injury happened when she was 18 months old, before she had learned to talk or learned social norms, would she not be diagnosed with "autism"?

The answer, Mrs. Taylor, is no. The symptoms of Dystonia only are similar with autism is that there are repetitive movement. And I'm taking about real autism, Mrs. Taylor, not your supposed "immune-disorder-caused-by-vaccines-that-display-autistic-traits". You believe your son has an immune disorder; you should be calling it an immune disorder that has been misdiagnosed, not quoting it as "autism". Autism is, for the record, a very real neurological wiring of the brain. It has been noted by several studies now, that when doing brain imagery, the autistic brain is very physically different that the supposed "normal" or neurologically typical brain, with indications that the cause of differences would have to occur while a babe is in the womb, at the point of pregnancy, if I remember correctly.

Either way, Dystonia is still very different from an acquired autoimmune disorder or autism, which is clear if she had even bothered to even look it up in Wikipedia.

According to Wikipedia, October 17, 2009: under "Symptoms"

Symptoms vary according to the kind of dystonia involved. In most cases, dystonia tends to lead to abnormal posturing, particularly on movement. Many sufferers have continuous pain, cramping and relentless muscle spasms due to involuntary muscle movements.

Early symptoms may include loss of precision muscle coordination (sometimes first manifested in declining penmanship, frequent small injuries to the hands, dropped items and a noticeable increase in dropped or chipped dishes), cramping pain with sustained use and trembling. Significant muscle pain and cramping may result from very minor exertions like holding a book and turning pages. It may become difficult to find a comfortable position for arms and legs with even the minor exertions associated with holding arms crossed causing significant pain similar to restless leg syndrome. Affected persons may notice trembling in the diaphragm while breathing, or the need to place hands in pockets, under legs while sitting or under pillows while sleeping to keep them still and to reduce pain. Trembling in the jaw may be felt and heard while lying down, and the constant movement to avoid pain may result in the grinding and wearing down of teeth, or symptoms similar to TMD. The voice may crack frequently or become harsh, triggering frequent throat clearing. Swallowing can become difficult and accompanied by painful cramping.

Electrical sensors (EMG) inserted into affected muscle groups, while painful, can provide a definitive diagnosis by showing pulsating nerve signals being transmitted to the muscles even when they are at rest. The brain appears to signal portions of fibers within the affected muscle groups at a firing speed of about 10 Hz causing them to pulsate, tremble and contort. When called upon to perform an intentional activity, the muscles fatigue very quickly and some portions of the muscle groups do not respond (causing weakness) while other portions over-respond or become rigid (causing micro-tears under load). The symptoms worsen significantly with use, especially in the case of focal dystonia, and a "mirror effect" is often observed in other body parts: use of the right hand may cause pain and cramping in that hand as well as in the other hand and legs that were not being used. Stress, anxiety, lack of sleep, sustained use and cold temperatures can worsen symptoms.

Direct symptoms may be accompanied by secondary effects of the continuous muscle and brain activity, including disturbed sleep patterns, exhaustion, mood swings, mental stress, difficulty concentrating, blurred vision, digestive problems and short temper. People with dystonia may also become depressed and find great difficulty adapting their activities and livelihood to a progressing disability. Side effects from treatment and medications can also present challenges in normal activities.

In some cases, symptoms may progress and then plateau for years, or stop progressing entirely. The progression may be delayed by treatment or adaptive lifestyle changes, while forced continued use may make symptoms progress more rapidly. In others, the symptoms may progress to total disability, making some of the more risky forms of treatment worth considering.

An accurate diagnosis may be difficult because of the way the disorder manifests itself. Sufferers may be diagnosed as having similar and perhaps related disorders including Parkinson's disease, essential tremor, carpal tunnel syndrome, TMD, Tourette's syndrome, or other neuromuscular movement disorders.

And that's just from Wikipedia. Now, I know that quoting Wiki is not very academic of me, and if this was an academic paper, I would automatically get a 0 and possibly prosecuted for plagiarism. So, I took a look at the Dystonia Medical Research Foundation, on their What is Dystonia page, found this:

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom....

....Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

And because I'd like to remind Mrs. Taylor as to the diagnosis of autism, from The Geneva Center for Autism, autism is marked by (1) qualitative impairment in social interactions, (2) qualitative impairment in communication, (3) restricted repetitive and stereotyped patterns of behaviour, interests, and activities, (4) delays or abnormal functioning in at least one of the following areas, social interaction, language as used in social communication, or symbolic or imaginative play. You can find the complete DSM-IV criteria here.

Also, under the International Statistical Classification of Diseases and Related Health Problems 10th revision, Autism is under Pervasive Developmental Disorders (Chapter V. F84.0) as a Mental and Behavioural Disorder, while Dystonia, specifically Drug-Induced Dystonia is under Extrapyramidal and Movement disorders (Chapter VI. G24.0) as a Disease of the nervous system. You can look it up on the 2007 version here.

Therefore, Mrs. Taylor, the answer is "no". Dystonia would not be misdiagnosed as Autism.

So, dear Mrs. Taylor, next time you want to ask a question about an apparent similar disorder, do some research first. You'll cause less misinformation and confusion that way.

P.S. Mrs. Taylor, have you read the UK study that reports that autism rates in adults are the same as in children? This includes the full spectrum of autism, btw, for both rates.

Wednesday, October 14, 2009

Blogging as Communication

A couple years ago, I noticed a new blog by an autistic boy. As a young boy, his entries were simple accounts of the day and what he enjoyed. Unfortunately, I have lost track of his blog, and so have been unable to see how he has progressed with his writing. His writing reminded me of early entries in my diary as a child, except, mine weren't about what happened, but rather vented the anger and pent up frustrations I experienced daily and was unable to express verbally. The writing style was similar though; simple sentences and emotions straight from the heart.

Recently, I've taken a look at my blogging from high school, and it basically equates to "this happened today, so and so did this and I'm upset". I compare this to how I write right now, which is more or less "this is what happened, my thoughts as it happened, my reflection of what might have also happened, how it could be handled".

In other words, I took a look at the evolution of how I use journals from merely getting steam off my chest to using it as a tool to sort my thoughts, feelings and actions, reflect on the same of others and sort out what I can do, as well as getting feedback and support from others, both those I know in real life and friends I've only met online, with the occasional complete stranger.

As seen by the thousands of other autistics online, computers and the internet is proving to be quite the communicative tool. I recently met a woman who referred to herself as a "Low Functioning Autistic" on the WrongPlanet forums, who was able to express her opinions by typing. Carly Fleischmann is another example of an autistic who has found the ability to communicate by typing. For many of us, we have found that we can type what we think, feel and want to say a lot easier than speaking and for some, even than writing.

What this means, to me, is that speaking is not the only method of communication. It's one of the methods that appears to be the most easiest by the majority, but it's not the only way.

So before a person is written off as non-verbal or unable to communicate, I would suggest alternative methods to communicate. Journal writing, as I've seen, has been a great outlet of self expression. As I've written on the Autism Parents Forum (to a parent with an autistic daughter)

In terms of self-expression, I find speech rather difficult to express feelings...

...I suggest writing a journal, either private or public, written or typed. Written journals are good for improving handwritting, but if she's more comfortable with typing, she could keep a private folder of word docs or make use of the many many blogging sites out there.
Private journal writing, I find, helps with getting out pent up frustration, anger, etc, that may not be comfortable expressing in public. Public journal writing, though, helps with expressing to other people. Both, I find, help with thinking through situations and a place to say one's peace without being interrupted.
It takes a while, but at the very least it gets things OUT and not pent up inside.

If typing/writing ain't her thing, there's always drawing. While I hesitate about those face-recognition programs and games, since often the faces are cartoony and don't actually look like real human faces, thus conversion of knowledge to practice is tough. However, using cartoon-ish faces as symbols can work. (I'm resisting the urge to go into a university level discussion on how letters are symbols) So, instead of "I'm feeling happy" , "I am feeling Grin"
Also, using colours for feelings, modified pictographs or something.
I draw a lot to express myself, I know that. In grade 3, I drew my teacher as a lovely lady with claws and teeth to express how much I adored her, yet I thought she hated me.
In grade 12, I drew a comic of my day, to express how throughout the day I was getting more and more overwhelmed until I crashed (I think it's framed in the special ed room now...).
If she already draws, pay attention.
People are creatures of communication, using a wide range of different languages to communicate. So, let us speak.

Friday, October 9, 2009

Spoons, Batteries and Autism

I wanted to discussion the relationship between spoon theory and what I consider battery theory in regards to autism, since I have found the both of them so useful as metaphors to explain energy and ability to do things on a day to day basis.

The Spoon Theory
by Christine Miserandino can be found Here in .pdf format

To summarize it briefly: each day we are given a number of spoons which we use throughout the day to "pay" to do things. For a lot of people, they get a near unlimited number of spoons, but for someone who is sick or disabled, the number of spoons can be limited and even changes from day to day. Also, the "cost" of things may also change. One day, getting dressed may cost one spoon, another day, it may cost two spoons. One day, leaving the house may cost two spoons, another day, it costs five. These are just examples to illustrate spoon theory. Often I have found others who use spoon theory to illustrate their well-being.

For example "this morning, I seem to be short on spoons" or "today I have enough spoons" or "I don't think I have enough spoons to do that"

My Battery Theory works kind of like Spoon Theory, except that it has to do with
energy in general and being able to do things (use spoons). A lot of the time I specifically use it to show how much social interaction I can handle. For me, even a little social contact, like someone walking by, drains my battery. Sometimes one person drains the battery more than three people. On a good day, the drain is slow and paced, on a bad day, the drain is fast and uneven.

I describe the energy levels in my battery with colour levels. In each colour level, there is an "early" and "late" stage, meaning, how long I've been in each colour. The longer, or "later" I'm in a colour, the harder it is to recharge. I have four colours, Green, Yellow, Orange and Red.

Green: I'm good, I'm refreshed and at my peak. At this level, I can do pretty much anything. In this stage, I'm good to test my boundaries and sensory input, and can put up with a lot.

Yellow: I'm a bit tired, but I'm holding in there. At this level, it's fairly easy to take short breaks and get back into Green. This is a pretty safe tired level. However, it has taken me a long time to recognize myself at this level and being able to differentiate it from the other tired levels.

Orange: I'm pretty tired. Still hanging in, but I'm starting to be more likely to make mistakes, loose skills, and be very intolerant of sensory issues. I can handle things, just not as good as I usually can, might get whiny, more intolerant. Withdrawal, time out, or as I call it "lone time", is highly recommended at this point. It takes about an hour or so to get back to Green or an early Yellow and I try not to get any more drained than a late Orange on a regular basis.

Red: This is the danger level. If I'm in public, and I say/type/write that I'm at red, it means that I'm running on low or emergency energy, and once I get to a safe, private location, I'm going to crash. At this stage, withdrawal isn't just highly recommended at this level; it's essential. This is the level where there is a high risk of burn out, meltdowns and overload. Actually, it's not even a risk, it's a guarantee.

In an early Red, I can actually mimic "functioning" or green. However, at both early and late, it can take an entire day for get myself back to Green. And that's if it's uninterrupted. When I've reached Red, it's harder for me to recharge, and so any interruptions, whether it'll be talking, notes for me to read, just tends to drain. Actually, I think in a Red, the only form of communication I can handle is online, and sometimes not even that.

On a good day, it takes me six hours for me to reach Red, after which there's really no way for me to socialize. Sometimes upon reaching Red, I'll just shut down, either really quickly or slowly, but there are times where I pull in emergency stores and actually appear to be functioning or in a higher level. But it's a survival and emergency stores, and is basically me "borrowing" spoons from future days, and results in my needing to recharge more frequently in the following days to recover.

For an example, I went to an international symposium as an autistic artist to display my work in the gallery. I also brought along a friend who was interested in attending some of the panels. Being low on cash, I arranged to stay with a friend who lived in city limits and planned to use the commuters train to get to the symposium location each day. This required us to wake up very early in the morning to catch a bus to take us to the train station, where we catch the right train to take us into the city. Since we didn't get back to our lodgings till late, we got about 3 hours of sleep each night. My friend ended up sleeping under the display tables, and since we had to have someone at our table all the time (for security), I ended up manning the table with little to no breaks each day. For three days.

I did it. I was extremely tired the entire time and I know my skills across the board suffered, but I did it.

Until I got home; then I crashed and had to take an entire week to recover.

Part of the length of recovery was due to the fact that I was also in school at the time, but it was also that I had been running on emergency supplies for longer than I should. As my roommates will concur, I didn't really operate at my usual levels that week, even almost became violent during a minor disagreement.

Now, this is not to say that this is how it works for each autistic person. I understand that each autistic has different limitations, boundaries and tolerances. Things are different for each of us.

However, I offer this as a way to explain a part of what it is like for me to be autistic, just as Christine used her Spoon Theory to explain living with Lupus. If it seems to fit by way of an explanation, both to other autistic and parents/caregivers of autistic people, then it is a good way to explain.

Wednesday, October 7, 2009

Over 60 Disability Organizations Condemn Autism Speaks

For Immediate ReleaseContact: Ari Ne’eman, President

Wednesday, October 7th, 2009The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org

Disability Community Condemns Autism Speaks

Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization

Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization.

The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”. The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.

ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso CuarĂ³n and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.

Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related). The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:

a)Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death

b)The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries

c)The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership

“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.”

In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.

The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”


Media Advisory on Protests

Letter to Autism Speaks sponsors

About ASAN

The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. For more information, visit http://www.autisticadvocacy.org/.

# # #

For Immediate ReleaseContact: Ari Ne’eman, President

Wednesday, October 7th, 2009The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or


Autistic Community Protests Autism Speaks’ Exploitative Practices

WHAT: The Autistic and Cross Disability communities are protesting exploitative practices, lack of representation and unethical fundraising tactics by Autism Speaks, the most well funded autism advocacy group in the country.

WHERE/WHEN: A protest held in Portland, Oregon on September 26, garnered media attention, including from Fox (FOX 12: http://www.youtube.com/watch?v=JxIPqE3DYG4); CBS (KOIN 6: http://www.youtube.com/watch?v=74I5IdzzAPA and http://www.youtube.com/watch?v=jYeZVQu5H3A; KBOO-FM (http://www.autisticadvocacy.org/documents/kboo-asan.mp3).

Additional protests are planned:

Sunday, October 11, 2009

2201 Fred Taylor Dr. (corner of Borror Dr., near 4-H Center)
Columbus, Ohio

8:00 AM – 12:00 PM

Sunday, October 18, 2009

Suffolk Downs
111 Waldemar Ave

East Boston, MA

9 AM – 1 PM

Tuesday, November 17, 2009

Autism Speaks’ Concert for Autism

Carnegie Hall

57th Street and Seventh Avenue

New York City

7 PM

WHO: The Autistic Self Advocacy Network (ASAN), a non-profit organization run by and for autistic people.

WHY: Autism Speaks uses damaging and offensive portrayals of Autistic people as fundraising tactics, does not include any Autistic people on its board or leadership and spends very little of the millions of dollars that it raises for things that help Autistic people or families. See the joint letter, attached.

MEDIA OPPORTUNITIES: Footage of protests; interviews with Autistic individuals.

Monday, October 5, 2009

Expanding Activism Styles on Genderbitch

I highly recommend reading the post Activist Modus Operandi: Methods of Communication.

You remember the post I made not too long ago about the Temptations of Activism? I divided activism into passive and aggressive, and gave a warning about activating in a way that hurts the cause. In the end, I linked to a couple of other blog entries about Trolls. One of those was to Recursive Paradox's Genderbitch.

She also posted an entry about activism styles, but divided the styles up into four methods: Nuker, Appeaser, Logic Bomber and Emoter. She writes about the strengths and weaknesses in each methods, the likely personality traits that contribute to each, and gives some guidelines to maximize the efficiency. You can read more of her post, but I've quoted those guidelines below.

1: Keep Your Group Mixed: Have Nukers, Appeasers, Logic Bombers and Emoters present within your activist network, working for the needs of your group. Make sure you have at least some switchers around and people who walk middle lines. Having someone for every context is always a good idea and will maximize your success.

2: Be Mindful Of Flaws: Make sure you are self aware and externally aware about the disadvantages of your methodology. Specifically Appeasers, who are in the most dangerous position of all. Nukers, Logic Bombers and Emoters can’t effectively be turned against their own as weaponized tools but Appeasers can. If you practice Appeaser methods, be extraordinarily careful that what you see as progress isn’t just you being co opted and used to silence Nukers and others or used to conceal other problems through lip service progressivism. Nukers clearly have to be mindful of intersectionality and their own privilege as well as allies with anxiety or conflict issues. And the other two need to be mindful of who they’re speaking to and whether they’re wasting energy.

3: Don’t Infight Over AMO’s: Seriously, this is a huge fucking one. The biggest advantage the oppressors have over you (no matter what group you’re in) is numbers. They don’t have to all agree and they can infight all they want. There’s more of them and they already have more power. We can not afford to. Now if someone is failing at 2 above, then yes, criticize them. But keep it in house. Don’t make public spectacles of it, don’t silence, don’t attack. The bigots eat that shit up. And more often than not, such infighting isn’t even in the presence of a fuck up on rule 2 but simply philosophical disagreements. Quite frankly, philosophical disagreements are a shit poor reason to engage in energy sapping infighting. If your philosophy does not connect with someone’s methods, well that’s something to discuss on down time, civilly and without argument. Jabbing at people because you think their Nuking is violent and wrong or because you think their Appeasement is an utter useless waste is not acceptable. The infighting divides us and it’s part of why we’re staying conquered.

4: Tag Team: Using multiple methods of communication in your AMO or having different AMO Communicators to back you up when you’re in the field or on the front lines maximizes your potential. If you do a little bit of Nuking and the person is getting pissy and whiny or seems to be withdrawing, call in an Appeaser to put it in gentle terms. If you’re getting ignored completely as an Appeaser, call in an air strike from the Nukers to get the attention centered on your movement’s needs. Logic Bombers and Emoters working together are especially invincible, because what works better than rational arguments mixed with things that tug your heartstrings? Remember, the stakes are intensely high. It is worth it to manipulate the majority, because chances are that’s the only way we’re going to get what we need.

5: Always Have Substance: This I can’t stress enough. It doesn’t matter how much attention you get as a Nuker, or how well you can string together an argument and logic as a Logic Bomber if you aren’t right and you don’t have content within your method. It’s irrelevant how gentle and caring you are as an Appeaser or how well you can play the heartstring violin as an Emoter if you’re wrong or don’t have anything useful to say on your group’s needs. Always make sure you know what you’re talking about, don’t speak for those with different experiences and make sure you actually have something to say. Communication methods won’t save you if you don’t have anything to communicate or you’re dead wrong about something.

It's a very good read. So go ahead and give it a look!

Friday, October 2, 2009

new AWA Forum Moderator

I'm guessing that I can post this, since it's been made apparent in the changes on the AWA facebook group.

I am the new moderator for the Asperger Women Association's Forum.

Which means, I'm the one approving users and I'm the one who's in charge of making sure everyone plays nicely on the boards. If things get a little out of hand, I'll be gentle but firm in reminding users of the rules.

Also, I get to add, edit, delete and move things around.

Anyways, I hope that we'll all work together to make the forums an active community.

Here's the link to the forum: http://z4.invisionfree.com/Apserger_Women/index.php

and yes, the link is correct; by the time they realized that "Asperger" was spelled wrong, the account was finalized and they would have had to make a whole new account to fix it.

Thursday, October 1, 2009

Chocolate Cake in a Mug

Yeah yeah, this is off topic. However, with all the anger going around about the Autism Speaks video, I want to share a little yummy with everyone. And what's a woman's best friend? Chocolate. So, I'm reposting this recipe from my cooking blog Aspie Cooking

5-Minute Chocolate Cake

Take a coffee cup.
Put in 4 Tbsp white flour, 4 Tbsp sugar and 2 Tbsp cocoa.
Stir really really well.
Add 1 egg.
Stir really really well.
Add 3 Tbsp water and 3 Tbsp oil.
Stir really really well.
Add a splash of vanilla.
Add 3 Tbsp chocolate chips (optional)
Microwave for 3 minutes in a 1000 watt microwave.
Let cool for 2 minutes.

Since I didn't have chocolate chips, I added chocolate milk sauce (you know, the sauce to make chocolate milk) on top and let it smother the sides. Really good.

I emphasize the stirring. It's really hard to stir well in a coffee cup. Also, the cake rises out of the cup while cooking; it looks pretty cool. And lastly, it makes a bit of a mess in your cup, but no more than, say, hot chocolate.