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.

Saturday, September 26, 2009

Repair Kat's Wheelchair

Kat, an autistic woman in a wheelchair, needs help to repair her wheelchair.

Quoting from her facebook:

I need help. The literal kind, the figurative kind. I don’t know if this is about to offend people but, my wheelchair was damaged by the man that tried to kill me. I have asked for help from local charities and the answer is “Not unless you move into a nursing home.” I am 25, I am able to live, and I need help not to be locked away. I need 500 dollars to cover the cost of batteries and the parts needed. I admit I cannot ever repay anyone who helps me, nor can I ever express the gratitude that I feel at even feeling that I can ask for help. This is my chance to get my freedom back. That or I have to wait for four more years for a new wheelchair. (From her facebook)

So please donate!!

The Temptations of Activism

From what I have seen from history, there are two methods of activism: aggressive and passive.

Aggressive is the destructive kind, the marching and violent protests filled with hateful speech. It's the riots with fires and smashed windows, with fights and police firing on the crowds. It is an out-pour of rage in the most destructive manner.

The problem with aggressive and violent protesting is that it often becomes a matter of revenge, of getting even. Strong emotions like anger and rage are very hard to stop, especially when echoed back by people nearby, and often leave a person tired and drained.

However, I don't believe in not saying anything if an injustice has been done. Both as a human being and as a Christian, it is my duty to actively counter injustice.

Now, I come from pacifist family, so I am more inclined to passive activism. Passive is, well, more passive, but no less vocal. It's the non-violent protests, where protesters refuse to give in to their hatred and strike back, but are no less willing to back down. It's standing up for what you believe in and not lowering yourself to crude violence.

Given that I've quoted him before in previous posts, one of my favorite non-violent protesters is Mahatma Gandhi. Some of my favorite quotes from him are:

“Be the change you want to see in the world.”
“Nobody can hurt me without my permission.”
“Whenever you are confronted with an opponent. Conquer him with love.”
“The weak can never forgive. Forgiveness is the attribute of the strong.”

I work hard to maintain grace and forgiveness in order to be a non-violent activist. So it takes a lot for me to even consider aggressive activism. Thankfully, in real life, it is easy to draw the line between violent and non-violent protesting. Not that I'm not tempted in the midst of my frustrations, but the actually doing is different from thinking. After all, who hasn't thought of devious or even cruel things to strike back at people who have slighted us? The difference is that while thinking these things isn't nice, you aren't the kind of person to actually DO them.

However, with the Internet, a new breed of protesting medium has been made, making it easier to protest. It is easier to spread around information, easier to bring attention to issues, plan protests, etc. However, it is also easier to give into the temptations of aggressive internet activism, the kind that weakness our position and makes it easy for the courts and the public to dismiss us as a violent rabble just looking for trouble. This includes personal attacks, "trolling" and generally making oneself out to be abusive.

I'm not saying this to criticize anyone's actions. This is merely a reminder to myself as well as others to act in a manner that does not jeopardize our position. We can shout out our slogans, stand in protest and spread information, but we should refrain from taking revenge, violent actions or actions that could be considered abusive or harassing.

It's not something that's easy. Heavens knows it's not always easy, especially on the internet with the presence of trolls roaming our midst. But we should remember that the public is also watching us, and to conduct ourselves in a manner that proves that we are respectable people calling out on an injustice. By our setting the example, the public will be more favorable towards us than if we were to just strike out in our fury.

That means, of course, not feeding the trolls.

For more information about trolls, I would highly recommend this post by Genderbitch: Trolling: The Ultimate Activist Trap as well as this post by Bev What Kind of Troll Am I?

Wednesday, September 23, 2009

An Open Letter to Suzanne Wright of Autism Speaks

I sent this to the Autism Speaks contact email contactus@autismspeaks.org. I'm also posting this here as an open letter.

To Suzanne Wright and whom it may concern in Autism Speaks,

The latest video of your organization Autism Speaks, "I am Autism", completely disgusts me. It present an inaccurate presentation of autism, as if it were some disease, a blight or a growth that can be torn out of a person. Autism is a part of who I am. By presenting autism in the way that you have, not only have you demonized autism, but you have demonized and victimized autistic people. You show no compassion or empathy for autistic people in the way that you have represented us, or rather, the way in which you lack to represent us.

Because actually, the video doesn't even address autistic people at all, only "autism" as a child-stealing disease and our parents. No once in the video do I see anything about how autistic people live, only the struggles and trials of our parents, putting them high on a pedestal as if they were all-suffering saints. While yes, our parents face struggles, they do so alongside us, and just because we are autistic does not mean that our lives are sinking pits of misery and tragedy. We have our own challenges and troubles, joy, happiness and love, just like non-autistic people.

The information about parents is also false, based on inaccurate presentations that are ignorant at best and outright lying at worse. There has been no evidence that families with autistic children have higher divorce rates, are more in debt, or become socially withdrawn. Yet the video continues to spread false information about our lives.

But that's not the end of it.

Suzanne Wright, you LIED to parents in you personal appeal for their videos (released August 6, 2009 on the Autism Speaks YouTube channel). In the video, you states that the video will "[shine] a bright light on autism”. You give the impression of a positive video with an optimistic presentation of autism and autistic people. The only "bright light" in the video is the determination of parents, the vilification of autistic people, and to donate to Autism Speaks' bankbook is the only way to make our lives better.

So congratulations, you have just angered and pushed away the very people you claim to be helping, and have given us more reasons why we hate your organization. We are sick and tired of your corrupt practices. We are disgusted in the way that you have attempted to represent us. We are appalled, horrified and deeply resent everything that you do. Your name has taught us the meaning of hatred and loathing.

You say that Autism speaks and it's time to listen. So you want autism to speak, okay then, you had better be listening because here's "autism" speaking:

I am Autistic and you DO NOT speak for ME!

Never yours,
Corina Becker

ASAN issues press release condemning Autism Speaks

Autistic Community Condemns Autism Speaks

ASAN issued the following press release today condemning Autism Speaks' unethical and offensive "I Am Autism" advertising campaign. Please repost and redistribute widely.

Press Contacts:

Ari Ne’eman
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org


Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign
“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“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,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso CuarĂ³n and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN). “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive 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, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating 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 living 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,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work 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 the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html
“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks
“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
I have declared war on you.”

Emily (Parent):

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate):

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

Tuesday, September 22, 2009

Autism rates at 2% and not because of MMR

Before I start, if you haven't checked out the Asperger Women Association's latest internet radio show episode "Autism and Changing the Language with Michael Buckholtz" then I suggest you do so now. It is an excellent discussion on the word "disability" when referring to autism, and how to go about to make a positive influence.


What has caught my attention was the release of a study on autism and a couple of articles documenting and commenting about it. From the Times blogs comes a post about the National Autistic Society coming off the fence , as well as the actual news article about the study and the implications of the results. All very good, nice and dandy. Yay for the press.

Ah, but of course, we have the blogging sphere. Left Brain/Right Brain refers to an excellent post by Mike Stanton, that includes a more inside look and observation, including study links! Because facts are facts, and it's starting to get harder to play neutral.

Now, as we're all cheering, Socrates from the New Republic keeps us honest by being brutal and surprisingly refreshing in interpreting the study's results. Because there's always a different perspective on things.

Personally, I can't help but notice the large gap in the mens and women's prevalence rates. 1.8 for men, and 0.2 for women. I'm trying to figure out whether the new concepts of autism manifesting differently in women was factored in when they did the studies.

You can find the actual studies here and the report released here.

Anyways, the newspapers do a little rounding (or as I think, adding 1.8 and 0.2) and proclaim an autism prevalence of 2%, in adults as well as children. That we know of, I might add. While it's a nice number, I'm thinking it's probably higher, but that might just be me.

Either way, a 2% prevalence is larger that some categories of Myers-Briggs Personality Types.

(for the record, I'm

Sunday, September 20, 2009

A Critique of Ginger Taylor

Lately, my attention has been brought to the writings of a Mrs. Ginger Taylor, who describes herself as the following on her AoA article:

Ginger Taylor holds a master's degree in Clinical Counseling from Johns Hopkins University that Dr. Gorski thinks she should not mention so much. She is an autism mom with a really messy house because she believed that those pretending to serve man kind actually were and spent way too much time trying to get them to look at evidence that a generation of children are being severely injured by over vaccination and pollution. She blogs at Adventures in Autism, where she will be absent for a bit in order to clean up her life after all the time and energy she has wasted on posers who don't give a shit about sick children. Her current projects include praying to God to take away her bitterness and anger, and playing Farm Town with her sons where her blueberries are at 23%.

Her article on the AoA site is what can be summed up as a general complaint at the lack of concern and appropriate response to a letter she wrote to several professionals. She has posted the exchange on her blog HERE. She has mentioned responses to this exchange by people who weren't originally addressed in the original letter. Well, to that, I'll have to remind her that when something is posted onto the internet, it becomes part of the public domain, of a sorts. Yes, one can claim copyright laws, but once published publicly, everyone can see it and everyone is allowed to comment.

And so, this individual, who happens to be autistic, will comment and examine Mrs. Taylor's words.

Okay, first we have the usual story: child gets vaccines as per doctor's orders, child is diagnosed with autism, mother believes the vaccines caused her child's autism and feels betrayed by science-based medicine.

May I point out that Mrs. Taylor has a Master's in Clinical Psychology? This means that not only has she gone through the undergraduate program, but she has also gone through the graduate program. The next level in post-secondary education is doctorate, however, that is for people aiming for certain jobs, research and interests. An undergraduate degree develops critical thinking skills, the ability to take information and apply it to different situations and be able to argue one's stance. A Master's degree means that a person has written a thesis and successfully presented a valid argument. Someone working towards their doctorate degree would then present work that is potentially publishable in peer-reviewed journals, and then begin on, well, doctorate work. The particulars of this system may differ in the various departments, however, in every department, an undergraduate degree depends on the ability to do appropriate research, make the right documentation and present critical thinking skills. Also, I might add, that university libraries are not reserved for just current students, but are open to every person in every field to do research and expand on information. This means that should Mrs. Taylor wishes, she can go to her public university library, do research and have the skills to properly cite and document the information.

Let's look at the sources of information that Mrs. Taylor has read about autism:

Vaccine package inserts, a few studies, AAP/CDC web sites, a few media accounts

Hmmm, I can't help that she doesn't mention which studies and which media accounts she has been reading. Given that she refers to the question of whether "autism, an autoimmune disorder where in the immune system attacks the central nervous system" being caused by the Hepatitis B vaccine, I can't help but suspect that she did not read any official documentation about autism, or even looked it up in the DSM-IV-TR. If she had done so, as someone with a Master's in Clinical Psychology would be able to do since even an undergraduate in Psychology would be able to do so, then she would know that autism is NOT an autoimmune disorder, but is considered to be a Pervasive Developmental Disorder that is neurological.

She then refers to her pediatrician not looking over highlighted vaccine inserts and the lack of response from the American Academy of Pediatrics, apparently using her experiences as evidence that the entire field of health professionals are inconsiderate of parent's concerns regarding vaccines.

Mrs. Taylor then cites David Kirby's Evidence of Harm. I point out here that Mr. Kirby is a journalist; it's his job to sensationalize every little thing that may turn out to be a selling story. So, at best the information that he provides is ignorant and at worse is downright lying.

From what I can tell from the research that Mrs. Taylor has been doing, the data in which she is using is also quite dated. Meaning, that the way the industry ran many many years ago is not necessarily the way in which it runs today. For example, safety protocols are always being re-applied, processes are updated and knowledge is constantly being discovered. I can't help but notice that many studies that are being quoted are quite dated and therefore are incorrect in today's context. Not that she mentions very many studies or where she is getting most of her information, as an academic should.

However, the rest of her post is largely her grievances over individual science journalists and bloggers whom disagree with Mrs. Taylor on 1) the definition of autism 2) the probable cause of autism and 3) the treatments and supports that autistic people need. Apparently, some of these people have viewed her as yet another of the crowd that believes mercury/vaccines cause autism and have treated her un-courteously and condescending, causing her to be very angry and frustrated. She excuses her public display of behavior with

And that anger apparently began to push me over some line somewhere, because today, three weeks later, I just don't care about giving myopic, immature, biased and unprincipled "science writers" the benefit of the doubt or a hundred more chances any more.

As she reports, Mrs. Taylor "asked them to do some self-evaluation. Demanded really" and the response was the following:

The response from "them" to my challenge that their dismissals, their insults, their lack of insight into themselves, their inability to self-correct and refusal to examine and address "our" concerns might be the problem, was to dismiss me, insult me, demonstrate an extreme lack of insight into themselves, display an inability to self-correct and to refuse to examine and address my concerns.

They responded to my accusations of failing to live up to the standards of their chosen industries, by failing to live up the standards of their chosen industries.

I called them biased, and to prove me wrong, they showed me their bias.

Giving Mrs. Taylor the benefit of the doubt, I followed her link to the letter she posted and sent to Lori Kozlowski. At the beginning, it seemed like a very reasonable response to Mrs. Lori Kozlowski's article. However, the letter slowly becomes what can only be described as an attack at the science-based medical community at a whole, based on the actions of a few skeptics and critics of the vaccines-causing-autism manufactured "controversy". Mrs. Taylor, in presenting her arguments, fails to present proper documentation for her sources and barely acknowledge or even consider the scientific data that has been gathered since the first time that these concerns were addressed to scientists in 1998, over ten years ago. When she does acknowledge the studies that have been done for her and others benefit, she does so to remark on supposed behavior of the scientists involved and does not even address the findings, never mind treat the subjects in a professional manner befitting of her academic status.

Instead, in her letter to a few of the journalists and skeptics, she makes a comparison of science with religion, calling on scientists to have a religious experience in their fields, forgetting that the nature of science is not to be about the individual, but rather about the entire population as a whole, and that scientists may not even be religious. Actually, it's very likely that the majority of scientists are not religious and such a demand for soul searching and conversion to faith-based studies is quite inappropriate for the field.

I am not going to address the issues concerning the studies, because I am not a scientist. Nor am I a journalist, or a science journalist/blogger, whose job is to write about the latest science news in an attempt to relate said news to the general public. However, as an individual, I can see the harm and immense cost (that would have to cover entire continents to be done properly as has been stated) in attempting to do some of the studies demanded, not to mention irresponsible to put so many people at risk of disabling and even fatal diseases. However, if they want to argue the specifics of such a study, they should address this and work with scientists to achieve a reasonable compromise, since previous scientific studies in the past have not satisfied people such as Mrs. Taylor.

Now, looking at Mrs. Taylor's conduct, in the entire letter, I did not see evidence of an objective academic who was using her critical thinking skills and acting in a professional manner in addressing other academics. I did not see the level of maturity expected for her age, the professionalism expected for her profession, nor the proper documentation for citing and the thorough research that is necessary for a Bachelor's degree, never mind for a Master's degree.

Returning to the entry with Mrs. Taylor's documentation of the exchange, she continues to respond subjectively to the responses that she received to her very subjective letter, and thus "proves" to herself and the rest of her reading public how dismissive the scientific journalism community and the science-based medical community is towards concerned parents. However, I may point out that no where has Mrs. Taylor demonstrated that these few individuals that she addressed actually represents the entire fields she attacks, nor has she demonstrated the objective skills and professionalism that these few apparently "lack" in their responses to, not professional or academic literature, but a personal letter.

Neither does Mrs. Taylor frame her concerns in the contexts to actual data gathered within the last ten years of studies that does address her concerns, rather dismissing the data as being made up information based on the fact that pharmaceutical companies fund the research, and with no regard to the actual scientific processes that renders funding sources as being irrelevant. Instead, Mrs. Taylor fires off her questions towards journalists and science bloggers without citations and references other than to her own blog and once to a newspaper article, and does not even a proper give a frame of reference.

To her credit, one of the responses that Mrs. Taylor was blunt and perhaps a tad unprofessional (to which Mrs. Taylor response with a barrage of questions, forgetting that such studies are easily accessible through university libraries and that in all science-based studies, there have been no indication of autistics having any unusual levels of health difficulties, including autoimmune, seizures and gastrointestinal issues, than the general public), in; however, the rest of the responses she received that she displays shows journalists responding appropriately to questions about their articles, their writing practices concerning science news, and a plain all-out attack on themselves as professionals. At one point, Mrs. Taylor urges Lori Kozlowski to quit journalism, as well as Ginny Hughes when she politely and nicely asks whether any of Mrs. Taylor's readers would be interested in a poll that might actually be in their favor.

In general with her letters and responses, Mrs. Taylor declares that not only is the LA Times "dying", but "...morality, honor and wisdom in scientific journalism is dying" due to the actions of the journalists to favor science-based medicine. She finishes her entry with one last jab at the original target, Chris Mooney, who was the author interviewed in Lori Kozlowski's article profiling his book, claiming that he and other scientists were trying to sell their "view of science" and that she "was their audience".

Not exactly Master's degree material, Mrs. Taylor, and not very professional of you, should you be wanting to present yourself as better than your opponents.

Wednesday, September 16, 2009

I posted this on Countering Age of Autism , in response to a reference to the belief that there is a conspiracy in the government and companies to use vaccines to turn the entire population autistic.

I'm still trying to figure the whole conspiracy theory out, as much as I can.

As fair as I can tell, the only motivation for "making everyone autistic" is for profit. While yes, there may be some greedy individuals in the government and industry; however, this is not a bushel of apples where one bad apple corrupts the entire lot.

Also, the point about adult vaccines making people autistic is somewhat ridiculous. If there was a conspiracy of this nature, then making "normal" people autistic in their adult and senior years is rather stupid. Think about it, an NT adult goes in for his or her vaccine, and within 10 days, suddenly stops being NT and diagnosed as autistic? Um, I think people would notice, and a good conspiracy is one that no one knows about.

Seriously. I know that some governments aren't as competent as we'd like, but I doubt that they're THAT incompetent.

Also, generally from accounts and experiences of others, adult autistic diagnosis tends to go similar to this (if it helps, imagine this with hand puppets):

person sees doctor "Gee doc, I've been having these problems all my life."

doctor listens to person and directs person to appropriate specialist.

specialist asks more direct questions "I think you have [insert ASD], because of this, this and this"

person "thank you, now I know what is going on and can get the appropriate help if I need it"

ta da, adult diagnosis of autism. It kind of isn't a spontaneous regression into autistic traits.

September 13, 2009 1:50 PM

Saturday, September 12, 2009

Autism and Nutrition scam alert

This conversation was made on twitter a while back, and thought to share it. It takes place on twitter between myself and @anthonycotton, who runs this site: http://anthonycotton.wordpress.com/

Anthony approached me, trying to sell me a supplement from a company called Reliv http://www.reliv.com/CA/EN/home.html (I'm in Canada, so I click “Canada” when the “where are you” screen came up. Http://www.reliv.com

Anthony: @CorinaBecker just posted a tweet offering 5 more people results with Autism. Will you b one of those people?

Me: @anthonycotton I'm not entirely sure I understood that; could you explain?

Anthony: @CorinaBecker I posted a tweet looking for 5 people who really wanted to c results with Autism within 90 days. I can't take 2 many people...

Me: @anthonycotton don't need to see results, as I'm not suffering or need help with being autistic

also, I don't see anything on your website to explain how anything you do helps autism, so I think you're endorsing a scam

Anthony: @CorinaBecker Not trying to be rude or anything.... Then why are you in an autism twitter group?

Well for starters my site is new, I wanted to be sure this actually worked before I started telling a bunch of people .

I don't know why you think I am endorsing a scam, and why u think I would miss lead people when it comes 2 a persons health.

Me: @anthonycotton autism isn't a health issue; it's the way that I think, the way that I am. I'm part of an autism group to help and support

as well as to get news

I am, after all, a Neurodiversity activist

Anthony: @CorinaBecker My family comes from a lot of health issues, and I we have finally been able to get a lot of health issues in general unde ...

Me: @anthonycotton I'll repeat. autism isn't a health issue. you can't cure it, so why are you treating it like it is?

my family has a lot of health issues 2, yet we do not consider autism to be a health issue, rather a neurological difference

Anthony: [@CorinaBecker] Besides if I was trying to scam people than there would not be a patten on the product, nor the health stories to back it up.

You may return to the site to study more information on our company, and what we have done for people.

Me: @anthonycotton oh, so you've updated the site in the past few hours?

Anthony: @CorinaBecker Ps I can be very defensive when it comes to a persons health, expessaly when they are suffering from the same thing I am.

Me: @anthonycotton so you're autistic too? I find I suffer more from a lack of understanding and support from the world than from being autistic

you haven't explained how anything you're offering helps autistic people, and the way you're promoting it tells me ur a scam

I'm very defensive about autism, since autism is the gift and blessing that God gave me and made me to be

Anthony: @CorinaBecker Than how do you want me to present it to you? If you heard if from someone else you listen?

Me: @anthonycotton what exactly are you trying to present? that's the first thing

Anthony: @CorinaBecker Ok .... Would you take 5 minutes out of your day to connect with me so I can properly explain this to you.

For some reason you are not getting what I am trying to tell you. When the body is given the proper nutrition it knows what 2

It knows what to do with it. Would you trust me If you herd it from a mother who actually took the time to listen.

Me: @anthonycotton hon, my mother teaches nutrition. Getting proper nutrition is important to everyone, but that's treating malnutrition

Anthony: @CorinaBecker Like I said before I am NOT trying to scam you, If I were I would not be replying to your messages. Honestly if you don't ....

If you don't take the time to listen than this is not going 2 work for u but before u say this is a scam u need correct info.

Anthony: @CorinaBecker Not is todays world...u should also know that nutrition in someones life is very important 2 maintaining a healthy lifestyle.

Me: @anthonycotton sure, but it's not treating autism, since autism isn't a part of malnutrition or nutrition deprivation

you might want to educate yourself about autism more: http://bit.ly/TeLxS

Anthony: @CorinaBecker Yes, I understand that!! All I am saying it that many people have gotten fantastic results with autism on the cellular level.

That my friend is a fact, if it wasn't there would not be a FOOD PATENT ON R PRODUCTS! & we wouldn't have such a clean record.

Me: @anthonycotton explain "autism on the cellular level

cause that's kind of like saying ppl with brown hair have gotten fantastic results using a brand of shampoo

u still haven't explained what exactly your product is or how it's suppose to be beneficial to autistic people in particular

Anthony: @CorinaBecker Like I said before... when the human body is given the proper nutrition it knows what to do with it.

Once the human body has the proper "fuel" it can go to work and on cells that need it most. Listen Im not saying that you are wrong

Me: @anthonycotton I think you are a scam, not because you aren't responding, but because you aren't answering my questions

which means, your product is what? multi-vitamins? and this is particularly beneficial to autistics why?

Anthony: @CorinaBecker But I am not the Microbiologist that created the product. I am not nearly that smart, and I am not trying to hide that!!

Than ask me your question again, because by now I don't remember what it was. I understand I am going around in circles....

Me: @anthonycotton okay, what is the product? and why are you targeting autistics with it?

Anthony: @CorinaBecker The product is called Reliv, and it's a simple shake pills are not good for the body. I am targeting autism because I have....

Me: @anthonycotton soooo, if pills aren't good for the body, why are most of our prescriptions in pill format?

and a supplement is a supplement, no matter the form

you have what?

Anthony: @CorinaBecker I will have to disagree with you on that one. With Vitamins in the form of pills, sit in your stomach

Good question... well for one a lot of medicine can only be made in pill form, second 98% of doctors are not nutritional dor.

Most doctors are trained to treat symptoms for a certain condition.

Me: @anthonycotton doctors? no, specialists are trained in one certain area, family doctors are trained in family medicine

and any nutritionist worth anything will tell u that it's better to eat real food than to take supplements

the science of nutrition is still in its infancy, scientists are continually identifying new chemical molecules which our...

...our bodies need. No pill or shake could have all of these, plus ones not yet discovered. Also, nutritions work ...

...nutrients work in partnership. You need all the nutrients of a partnership to be present for these nutrients to work

ironically, REAL foods have these partnerships in the portions humans need

so what you are doing, really, is preying upon people's insecurities

(20+ hours later)

Anthony: @CorinaBecker Well I can agree with you on that.... This simply is food, but people like yourself don't take the time out to realize that.

That is where I disagree.... If a microbiologist has Isolated a human cell, he can create a product for the body

Well sense you have more knowledge on my company you go ahead & tell me what I am doing. But until u have all of the facts...

.... straight and the only way that will happen is if you are open to try other things. Untill that time don't accuse me of...

.... being a scam, or leading people on, or any other false accusations against our company. There are tons of people who....

... have taken, and still take our product because they have seen results with ADHD, autism, eczema, diabetes, & many other...

..... things which you will never know because you don't take the time to listen to people who would like to help.....

..... Now don't get me wrong... if thats how you want things 2 be than that is your decision! All I know is that...

... the lifesyle that we are able to provide 4 people is far grater than you will ever know. Quite frankly I don't want....

... someone like youself in my circle of help anyway. Reason being... you are very negative and 2 quick 2 point fingers wi ...

...without having the proper information. Listen sorry4wasting ur time & mine this will never work 4 u!Doesn't work 4 every1 =D

Me: @anthonycotton it won't work, because there's no way that any of your scientists have found a way to put all nutrients that a human needs

into a powder or pill. What you're doing is leading people on. I have a nutritional textbook from a university here

and my mother TEACHES nutrition. science has yet to find all the vitamins, minerals and nutrients that we need, therefore...

therefore it is SCIENCE that says your product is a SCAM!

I'm not negative, I'm critical because I have a good basis for the science behind nutrition.

and don't give me your "people have tried this and it works" ancedote stories.

anecdotes are not data; show me the peer-reviewed studies that show that your product works

while I'm certain that it works like ANY OTHER supplement, REAL FOOD is still better than any supplement, and to claim that

that supplements will help with neurological disorders such as Autism and ADHD is dishonest, esp without the science

Anthony: @CorinaBecker How exactly would you know that, if you have no information about our company?

Yes it can be done, and it finally has been done. It has recently become public knowledge because it has finally been patented

.... health doesen't mean that she knows everything about it, and can tell me everything I need to know about a medicine.

Humm books r great, but a book can't isolate a human cell break it down, figure out what it needs exactly. Just cuz ur mom

If she did, than she would know about our product...and about our company. If we were a fake do u think we would be in

If you think we were a fake do u thingk we houlod have pattens on our products, or have maintained a clean recored 4 21 years?

are not understanding is that.... Food doesn't have all the nutrients in it anymore! http://bit.ly/Nror9

Visit the company website if you want gonna to tell u "when the body is give the proper nutrition".... http://bit.ly/16SJ3B

Me: @anthonycotton no. you are the one who's spreading this information, give me the science-based peer-reviewed studies that show that your...

...your company has found all the nutrients that humans need. I would think that it would be a major breakthough and other

...other scientists would be able to replicate the studies. This is how SCIENCE works

besides, it's scientific fact that EVERYONE does better when they get the proper nutrition, not just people w autism & ADHD

I visited the website and the "research" leads to magazine articles. where are the scientific studies?

Anthony: @CorinaBecker I have provided you with all the information I can while chatting, if if you want to take it a step further you may do so.

Me: @anthonycotton sure, that I will. I'll be search pubmed for studies that have found all the nutrients a human needs, plus other databases

I'll tell you the results, okay?

because surely you would like to know whether or not what you're doing is fraud

Googled “reliv” and other than business reports and magazine articles, found these:




(yeah, there's some guy who goes on about how Reliv is a scam, and then goes and sells his own site... sigh)

On the Reliv site, under research and articles are links to “science and health today” “nutrition news” and “life supplemented”.

This is their advisory board: http://www.reliv.com/CA/EN/Scientific%20Advisory%20Board.html

I have been unable to find anything on the PubMed database supplied by my school about anything regarding scientists finding all the nutrients a human needs by breaking down a human cell. (if anyone does find related articles that are easily and freely available, please don't hesitate to comment)

One would think that such a thing would be MAJOR big news in the science community and that the trials of such miracle supplement would be highly regarded by health departments. But no, in every health and nutrition textbook, guide and handout given by the Ministry of Health (Canada) gives a food guide and recommends eating fresh foods, mostly fruits and vegetables, and cut out as much fats and oils as possible. You know, moderation of the yummy sweets in favour of REAL food. Standard stuff.

To claim that a supplement is better than proper nutrition and to hail it as a treatment for disorders such as autism and ADHD is ignorance at best and a preying scam at worst.

Monday, September 7, 2009

Code of Conduct

In latest posts, it has come to my attention that I need to post a Code of Conduct on this blog. This is so that everyone who wishes to comment knows the reasons why I allow some posts and delete others.

In kindergarten, I learned what was called "the Golden Rule", which I have kept in mind my entire life: "Do Unto Others As You Would Have Them Do Unto You".

Basically, you want people to treat you politely, treat you with respect, then you treat people politely and with respect. Set the example. Be a role model. Because people do notice behaviour, especially children. If you're the exception, well, as Mahatma Gandhi put it, "Be the change you want to see in the world."

Keeping these words in mind, I have created my Code of Conduct.

  1. Be Polite: No insults, hateful speech, implied threats or remotely "trollish" behaviour will be tolerated. Violators of this rule will be reminded of this and will have one week to correct their behaviour and conduct themselves properly. At the end of the week or time of correction, whatever comes first, all posts violating this rule will be documented and deleted.
  2. Stay On Topic: I will not allow extensive tangents from the original topic. In the case of a large discussion occurring, I ask that the discussion please relate to the entry under which it has started, or that the discussion be moved to some where else. In the event where it is a discussion that cannot be moved to some where else, I will allow it to remain on my blog. However, I will not tolerate avoidance and/or guessing games in attempts to appear smarter while not answering or continuing the discussion in a civil and reasonably mature manner. Violations of this rule follow the same as above: one week to correct behaviour before removal of all comments from the blog.
  3. No Spamming: While I allow citations and quotations in discussions, they must be properly worked in and properly linked to reliable resources. I will not tolerate posts that are just links and which are not cited. I will allow rough citation methods. Posts violating this rule will be deleted without warning.

I should note that all violations of these rules will be documented the moment that I discover them.

I ask that all posting members to follow these rules so that I do not have to invoke comment-approval moderation onto this blog, as I believe that enforcing a sense of censorship discourages discussion.

I do not reject opposing opinions to my own; however, posting those opinions on this blog is very likely to prompt an attempt to discussion with me. Even if it just results in agreeing to disagree, we can do so politely and without hostility.

Any questions?

Saturday, September 5, 2009

Self Advocacy and Disability

In the autism community, the term self-advocate and advocacy gets used to describe people, sides and positions. But advocacy relates to disability community as a whole as well. And in general, advocacy, especially self-advocacy is a very good thing and is highly encouraged within the disability community that I have encountered.

Let's start with the basics: what is advocacy?

The definition of advocacy, according to the Shorter Oxford English Dictionary (5th Edition, pp33) is:
"The function of an advocate; pleading in support of".
In the same dictionary, the definition of an advocate as noun is:
" 1. a person whose profession is to plead causes in courts of law. 2. A person who pleads, intercedes, or speaks for another. [3 has been omitted since it's dated] 4. A person who speaks in favour of".
The definition of advocate as a verb is
"1. plead in favour of, defend; recommend publicly. 2. Act as advocate for."
You can also look it up on dictionary.com

So advocacy is speaking on behalf of someone else. As children, our parents advocate for us, for medical care, school, clothing, food, etc. It makes sense, since, as children, we don't know what we need and how to go about asking for it. However, when it comes to disabilities, this is taken a step further.

Night Storm, on her blog PrismSong, wrote about including children in the decision making process of their medical treatments, accommodations and special needs, including finding ways for non-verbal autists to participate as well. And well, I can't paraphrase it in a way that does it justice, so please bear with a block quote:

"So I am sure people are now thinking 'So if I wash off all the layers, is the bottom line that Bard Child is against treatment?' the answer is 'no', I am not against treatment of malign behaviors. I am against is this rational that hiding your child your daughter in the medical dark is ethical. Now I understand that there are a lot of exceptions and . People would say 'my child is non-verbal, I am doing this treatment so s/he can become verbal.' Ok then I can understand that rational very well, but would it be better to find a language that your child can use that isn't verbal-based? Perhaps something that s/he he can use easily and communicate clearly with? Perhaps the first step is not "fix the child" but rather "start communication". Once he s/he has communication method that is him/her is comfortable using and can be understood (pictures, sign, type), the next step is the one many parents ignore. Listen to what they have to say. Ask them their thoughts on their perspective:

* Do you feel that you are different/disabled?
* Do you feel left out a lot in school and home?
* What do you feel that is bothering you the most?
* What can we do to make you feel better?
* What are you're goals?
* How can we reach them together?

Understand their perspective will help figure out what treatments would be effective and what treatments they want. It will also help clarify some things that you might not be aware of. Such as the recognition that s/he is disabled. Some kids are aware at a young age they are disabled or feel that they are not like their peers. They might not have all the communication skills to properly state it. Now I know people are like 'well you don't need consent we're their parents/guardians.' Legally, yes you don't need their permission. But including them in the concept of treatment and what their thoughts on it is what I am trying to communicate here.

Now you shouldn't include them in very single detail but telling them the side-effects of their Ritalin is better that listening to them complain about how anxious they feel and wonder if they know it's just side-effect. Now I don't believe two year old should worry about the side-effects of their medication(if they are on meds), but eight-year old on 50mgs of Adderal should know the effects it has on him not the just good but the bad too. That way he could reason that the anxiousness and slight light-headedness is just minor effect and nothing to be totally worried about, but sever dizziness is something that he should tell ma and pa about. How you should approuch treatment to you child should be age appropriate. Asking them how they feel after each therapy session and getting feedback from them is teaching them an important skill in relay and to tell mom and dad if something isn't working. Once their older like around 10-13 then actually asking them if "Do what do you think about putting you on new meds, do you want to continue meds? What do want to explore other treatments?" Eventually there will be point in which they want to refuse treatment all together if nothing is effective anymore.

I guess when it comes down it's less "asking permission' but including them in discussion. Education on what treatments they are reciving is probably the best skill that you can teach them. They can't rely on doctors all the time, they should build the skills needed to learn what medications/therapies effect them and how effective are they."

And I completely agree. It is important for children to be included; not only does it help the child to understand what is going on. When you include the children, you open the door for discussion, understanding and communication. I mean, why bother trying to communicate when what you say isn't going to be regarded in any of the decision making? This gives the child a reason to communicate, to be a part of what is happening, and helps parents to understand the child and be able to advocate better for the child.

This can also be taken a step further. Including the child in the decision making and discussion of accommodations, supports and special needs also sets the foundation for self-advocacy. Self-advocacy is an important ability, as a child grows up to be an adult, s/he is expected to be able to speak for themselves, to be able to say what they need and why. By being involved with the decision making, the child-now-adult will know and have the understanding in order to do what his or her parents were doing before: advocating on their behalf.

This is self-advocacy, the ability to speak for oneself in regards of needs, supports and accommodations. As independent adults, people are expected to do this every day, and nowadays, this includes those in the disability community.

When I graduated from high school, my special needs teacher worked very hard to get me into a transition program for students with learning disabilities going into post-secondary education. This has to be one of the best things that have happened to me, as I was able to meet other students who understood what it was like to have difficulties in class and with social skills, test out assistive technology and learned how to meet with teachers and discuss my needs in the classroom as well as learning how to navigate in campus life.

In other words, I learned what accommodations works best for me, and I learned how to ask for them and explain why I need them. That is self-advocacy.

Now, I understand that university and maybe even college is not for everyone; however, you can see how learning self-advocacy skills is beneficial for people with disabilities, including autistic people. As we grow older, we become adults in the eyes of society and are expected to be independent adults as much as possible. As a Western society, independence is highly regarded, and being able to self-advocate is a part of being independent.

As for being independent, well, let's put it this way: I'm a semi-independent autistic women with ADHD and LD living with her parents and on social assistance. There is a temptation for me to integrate myself into the family in such a way so that I would always be dependent on others to help me function and advocate for me. I fight that temptation as much as possible, as I am aware that the support and services I need will not and might not always be available to me.

Right now, that means my parents. While I hate to think of it, I know that my parents aren't going to live forever, and so, I work with them to ensure that I can take care of myself. Even though I make plans and get supports into place for the times when I'm at my worse, this means that I have to have the skills to be as independent as possible; lifestyle skills like cooking, cleaning, laundry, healthy eating, and good sleeping patterns, health care services, financial services, repair services....

have I missed anything? Oh yes, the ability to know when, why and how to ask for help. In other words, self-advocacy.

Therefore, self-advocacy is about developing independent living skills as well as becoming aware of one's limits, one's strengths, and the point where one needs to ask for help and what one needs as supports. This isn't easy, in terms of developing those skills and in terms of personal pride. However, it helps us to be included in society, to live as independently as possible and at the same time, gives us the tools we need to be able to ensure that our needs are being met.

Self-advocacy is not about taking away services from people who need it, but empowering people to communicate and stand up for themselves. We are not a faceless movement, but individuals who want each person with disabilities to get the services they need and live as independently as possible. We are not fear-mongers bent on letting things be, but are working towards making a difference, not just in our own lives, but in the lives of others as well. We are working for a change, for a better future and a life where we can communicate, work and play.

So please, when you see a person stating that they are a self-advocate or is working for self-advocacy, remember that to be a self-advocate is to build strength and skills for independence, with and without disabilities.

Tuesday, September 1, 2009

Paraphrasing Pseudoscience

I really shouldn't be posting this, since I have yet to actually watch the show. I'm investigating how I can watch it while not in possession of TV entertainment services. However, who am I to pass up such a lovely review of the show. This particular quote, to be particular:
Mr. Lauer: “What do you say to those who accuse you being a fraud?”

Dr. Wakefield: “I’m not a fraud.”

Mr. Lauer: “Well, OK then.”

The rest of the most excellent article can be found here on rangelmd.