Autism Speaks Doesn't Speak For Autistics

Autism Speaks is the most well known non-profit touting that they spread autism awareness and education. On November 13, 2013 Autism Speaks will descent upon Washington lobbying for political action budgets. 

Autism speaks already has a plethora of corporate, celebrity, and media sponsors.  Thus, allowing them to be a very strong force. But there is a stronger force out there contending with autism speaks. What is this force? The autistic community. The parents, friends, and autistic individuals themselves. The real advocates of autism. 

Many people think Autism Speaks seems like a pretty decent charity. On the surface, they kinda do. They lobby autism awareness and yada yada yada. But if you actually listen to what they say, to what their goals are, you will see the sinister organization for what it really is. 

Need some examples? Ok, here are some facts about Autism Speaks via 

The Caffeinated Autistic 

 http://thecaffeinatedautistic.wordpress.com/so-what-is-the-problem-with-autism-speaks/

• Autism Speaks does not have a single autistic member on their board. Not even a token autistic.  
• Autism Speaks only spends 4% of their budget on “family services”.
• Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, eliminate autistics. 
• Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
• Autism Speaks was responsible for "Autism Everyday", which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel. * The producer of this PSA (Autism Everyday, 2006) explicitly admitted that the film was intentionally staged to portray negative images of autistic people and their families. See this here: http://www.alternet.org/story/38631/autism%3A_the_art_of_compassionate_living

• Autism Speaks is responsible for the atrocity known as "I am Autism", a short film produced by the same person who directed the 3rd Harry Potter movie and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”

That is NOT an organization who understands autism. It's definitely not an organization that believes in autism awareness and acceptance. This is an organization that believes that autism is a disease. That autism is a plight against humanity. That autism is something evil. Even scientist who research autism disagree with this idealology. 

This organization compairs autism to deadly diseases, and natural disasters. They do very, very little to encourage support of Autistics. They use tragedy models of disability to directly shut down the principles of anti-ableism, disability justice work, as well as the disability civil rights movement. In Autism Speaks’ Strategic Plan for Science 2013-2017, the authors uses language that inaccurately refers to autism as a "disease," and discusses autism’s "cost" and "burden to society," and how autism is an "urgent public health crisis." 

Their views are beyond concerning. These fear tactics are appalling. As their co-founder Susan Wright states, Autism Speaks wants to "ultimately eradicate Autism for the sake of future generations."

kerima çevik, parent of an autistic child, will be fighting against Autism Speaks tomorrow. I love this quote from her:

"(I) thought this was the United States of America. I can speak for myself, and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic."

"The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?"

She goes on to say that, "Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York" 

University referenced here: http://www.nytimes.com/2007/12/20/business/media/20child.html?_r=0

Suzanne Wright's entire disturbing post can be found here: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Now, if for some reason none of this bothers you, then at the very least you should have some concern about where their money goes. According to their 2010 annual report, Autism Speaks spends OVER HALF of their proceeds to pay management salaries.

For further reading, please follow these links: 

An Autistic Speaks About Autism Speaks

http://m.dailykos.com/story/2007/05/19/336513/-An-Autistic-Speaks-About-Autism-Speaks

Say NO to Autism Speaks 

http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html?m=1

Autistics, Media, and Misrepresentation (Thinking Perons's Guide to Autism)

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/07/this-is-who-i-am-this-is-what-i-do.html

Protesting Autism Speaks by Autisyic Hoya 

http://www.autistichoya.com/2012/11/protesting-autism-speaks.html?m=1

Alternet: Autism: the Art of Compassionate Living

Parents of autistic children strive to raise awareness in a world full of misconceptions about what autism really means. 

http://www.alternet.org/story/38631/autism%3A_the_art_of_compassionate_living

Autism Speaks Against Autistic Free Speech and Fair-Use Parody

http://m.dailykos.com/story/2008/06/22/540306/-Autism-Speaks-Against-Autistic-Free-Speech-and-Fair-Use-Parody

Lost Down The Rabbit Hole

There seems to be a new fad going around in full force: clean eating

The root cause of this lifestyles is admirable and important. I love that more people are becoming aware of what they're consuming and really beginning to examining their food... 

That being said, I desperately want to caution those who have adopted this lifestyle change. So here is my cautionary tale:

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http://www.michellechant.com/2011/08/

curiouser-and-curiouser-down-the-rabbit-

hole-and-back/

I wanted to be a lean, mean, clean eating machine. I did everything right. I did my research. I balanced my meals. I was informed, and level-headed. I workef put everyday and had six pack abs. Despite all of that, my obsession turned lethal. The scary truth is that being "healthy" nearly killed me. Now anytime I see someone being/striving to be uber-healthy I feel an urge to warn them, to show them the otherside of the looking glass. 

 

 *Let me clearify, by "healthy" I mean: Cutting out processed foods, trans fats, unnatural sugars, added sodium and chemicals, preservatives, refined flours, dairy, and meat. I ate a very balanced vegetarian diet (I did eat fish and egg whites). 

At about the same time that I had mastered clean eating, I also began experiencing terrible GI issues (including extreme nausua, severe cramps, and stabbing pains). I don't believe my new lifestyle had much to do with it. I felt physically better whilst adhering to it,and  drastically worse when I veered off-course. I had bouts of milder symptoms before (off and on for several years, actually) so I believe the severe physical illnesses I was experiencing were most likely the same thing. I do belive that my compromised health exasperated my underlying medical issues (I just recently got my answer as to what this mystery ailment that has plagued me for over 10 years is - Dysautonomia). Coincidentaly, the deepest part of my struggle with ED occured just when my Dysautonomia really started to get revved up. As that gained strength, the physical pain of my body was in became too much. The pain from just ingesting food was great enough to cause a fear so intense that I would develop a full-fledged phobia. 

I should also mention that I experience (and sometimes still do) a strange compulsion to move after ingesting something. This started several years before my epic battle with ED began. It was as if being idle turned the food into lead, which would painfully weigh down on my stomach. That "full" feeling was physically painful. Excruciating. 

Soon after the clean eating and fitness obsession hit its pinnacle, the delusions began. If I worked out, the calories I ingested would turn to muscle and it would fuel my body more efficiently. If I didn't, then said calories would turn to fat and would be wasted. The health and fitness fanatic in me just screamed "Muscle is good, fat is bad!"

I will always remember one particular day in the fall of 2002. It was then that I realized I was completely at the mercy of my eating disorder. This was the day that I knew I was sick. I knew I was too thin. I knew I was dying. Even more startling - and important to convey- is the fact that I didn't want to be that thin. Not in a million years. I wanted to gain weight. I wanted to be like I was before: Athletic, strong, fit, lean but not skinny. What happened that day and the revelation I had, shook me to my very core. I was terrified. That moment went something like this:

It was morning and I was sitting on the couch, watching TV while I ate breakfast which consisted of a regular sized bowl of cereal (some sort of Kashi), soy milk, and 1/2 a banana. Sensible and satisfying. 

Immediately after ingesting it, I panicked. That was the day I knew I was a prisoner on death row. The only reason I didn't reach out and seek help right then and there was because of the social stigma attached to eating disorders. I was too scared of what everyone else would think. The fear of being labeled a weak, entitled little white girl was too strong. This vivid memory is locked in my mind, forever etched into the walls of my psyche. I dig it up anytime I hear that voice - that dreaded siren call of ED- whenever I'm on the brink of relapse. This memory reminds me of the journey back home and how long, scary, and dangerous it was. Because of that, I don't dare jump back down that rabbit hole.

“In another moment down went Alice after it, never once considering how in the world she was to get out again.” 

― Lewis Carroll, Alice's Adventures in Wonderland

* Side note: I think it is important to be honest in order to truly grow awareness. However, to keep things as safe as possible I will NOT divulge information such as: weight, height, BMI, or clothing size.

The depth of my rabbit hole

*Upon Hospital Addmittance*
    Average body temperature: 95 degrees
    Average heart rate: 40bpm
    Hospitalized in critical condition
    Beginning stages of multipule organ failure
    NG (nasogastric) Feeding Tube (24hr/day feeds) 
    PICC line with 24 hr IV infusion nutrition (TPN - Total Parenteral Nutrition)
    Refeeding Syndrome after starting IV and NG tube nutrition.
    Gastroparesis

    Severe GERD

    Water intoxication 

How long did it take  me to make my way out of just that part of it?

    I was rid of the PICC line and NG tube after 6 months, but was still unable to attend school for another year. 

Ok, how about after that? 

    It's 11 years later and I still have issues with gastroparesis. 

    I have weak joints, osteoarthritis, gastritis (which causes my stomach lining to bleed periodically), neurological damage (though some of that is due to a medication reaction a year later), memory problems... That's all I can think of at the moment. 

Please, please, please be careful! Being healthy and fit is wonderful. No longer being able to enjoy (or even eat) something "unhealthy", or just a day to be "lazy" is not. 

No Makeup Monday

Yesterday, I learned about the No Make Up Monday movement. Every Monday Operation Beautiful celebrates the natural beauty we all have by going make up free. For the record, I love make up. I think it's so fun! - and Operation Beautiful agrees with me ;) But it is so important to remind everyone just how amazingly beautiful they are as their naked self. I actually really needed this reminder. After taking several pictures and analyzing which one was the best, (Proof of just how strong our sense of commercial "beauty" really is.) I nervously posted my picture to Facebook and Twitter. Here I am posting, once again, on the Internet. I must be getting better at this whole "body confidence" thing.

 

Some added inspiration, courtesy of Huff Post Women, helped quite a bit. In this article "Why I'm Wearing A Bikini On The Internet" Brittany Gibbons writes about her mountain she wants to climb: Wearing a bikini. *Note: I love bikinis but after having two kids I'm less than friendly towards them* She goes even farther and posts pics of this endeavor on the Internet! She's now my hero. Later this week she posted another article in response to the outpouring of commentary on the bikini one. This one was the reveal of her weight! I know, she's amazing! This article titled, Why I'm Revealing My Weight On The Internet she writes about how she had to defend her body and how she is, in fact, plus-size. In the end she writes: " People carry weight in all different ways. you can't draw a line in the sand and toss assumptions on either side. I do this, all of this, to show you what a real person looks like at this weight. And what a real person looks like in those cloths." 

Love it! Maybe one day I'll be that brave... Until then I will continue to raise awareness and try to help others in their recovery. Another awesome act of bold, natural beauty in the media is The Nu Project. The Nu Project is a 100% volunteer gallery of nude women in all shapes and sizes.The goal is to inspire women to feel better about their bodies. Huff Post Women also did a story about this project (how I heard about it) and has a slide show of 7 pictures from the gallery that are stunning. The creator of The Nu Project, Matt Blum, says that he tries to photograph women where they feel most comfortable - in their own homes- respectfully, with out a lot of sexual over/undertones.

Simply beautiful
        

The R Word

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  It was late afternoon and my mom was cooking dinner. My sister was... well, I actually don't remember what she was doing, and I was in the living room watching TV. Suddenly I heard shouting outside and something hit the front of our house. Startled, I looked out the window. Standing outside my house was the girl who lived down the street from me, shouting and throwing rocks at the front of my house. we went to school together, and for some reason we just never really got along. We tolerated each other. I thought she was a show-off and she thought I was too. I had probably done something or said something at school that day that peeved her off, I don't know. I threw the door open and was shocked at what I heard her yelling. " Melinda's sister is a retard!", "Retard!", "Retard!" "Melinda's sister is retarded!" Each verbal assault was accompanied by rocks hitting my house. The shock quickly faded and anger took over. I ran across the yard and yelled for her to "Take that back!" She kept shouting it and shoved me. I broke her nose. Right there, in my front yard, for all the neighbors to see. I probably should have felt bad or at least a little scared because people saw it. I was, after all, a total goody-goody. But I didn't and I still don't. My dad was watching from the front door, half upset by my outburst and half proud of how I defended my sister. I don't remember anything else that happened that day. I didn't get in trouble aside from a lecture about how resorting violence isn't the right thing to do. 

  I learned how to deal with things like that better and by high school I calmly asked people to please not use that word. If they asked why not, I explained it to them. Everyone I spoke to respected my request and I never heard any of them intentionally use that word in my presence again. When the occasional slip-up happened they always sincerely apologized. Generally, people use this term in a completely benign way and have no idea what the power of that word actually holds. Once they find out, as with most other things that are shrouded in ignorance, they understand better and it changes their perception and behavior. It is for that reason that I am a firm believer in spreading awareness.

  March 6th was the annual "Spread The Word To End The Word" 
awareness day

What is Spread the Word to End the Word? Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support to help create communities of inclusion and acceptance for all people. Learn more about this campaign here 

  The R-word fosters LONELINESS 

“It hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making “retard” jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.” – Joseph Franklin Stephens, Special Olympics Virginia athlete and Global Messenger As evident with my childhood confrontation, there are times, situations and personalities sometimes involved that may not be best suited for an immediate intervention when you hear someone use the R-word.  It simply may be best at times to walk away from a situation, but that doesn't mean you can’t still do good after walking away. 

• Language affects attitudes. Attitudes impact actions. Make your pledge to choose respectful people first language at http://www.r-word.org/Default.aspx

It Starts With A Voice is an amazing facebook page chronicling the journey of a wonderful family in their quest to end the r-word. If nothing else, please watch this video. I just did and now I'm in tears, happy tears. Other resources to check out (please do!): The World Of Special Olympics NYT: A Word Gone Wrong Barrington Patch: Spread The Word To End The Word denverpost.com The Hurtful Effects Of The R-Word written by Eddie Barbanell from the hit movie “The Ringer"

NEDA Awareness Week

Through my own (miss)adventures down the rabbit hole and the multiple journeys back, I have gotten to know NEDA. 

NEDA is the official Eating Disorder Association and it is wonderful. Over the years I have been to many sites that are geared towards this audience but I have never found one as indispensable as NEDA. Their information is unmatched, as is their resources. This is not just an organization for those afflicted, it is a place for everyone. Moms, dads, siblings, friends, men, women, young, old, and everything in between. 

Eating disorders do not discriminate. This week is NEDAwareness Week. 

The purpose of this week is to gain awareness and educate as many people as possible. Their theme is Everyone Knows Someone. How true! I wanted to do a special post(s) for this event, but once again had my dates mixed up. I didn't realize until yesterday that NEDAwareness is this week! 

Confession: I'm totally throwing this together at the last minute. 

Something that I have always found incredibly disturbing is the blind ignorance that people have towards eating disorders. I know that for me, I was petrified of very notion that I might have an eating disorder. I watched the health class videos and the after-school specials. I knew I wasn't the stereotype. Yet, I was so scared of anyone even thinking I might have one - not because I would be pressured to get better, but because of the negative view towards these disorders and myths that entangle them. I aim to help clear that up. 

Eating disorders do not discriminate! The portrayal of a young (usually white) female with poor self-esteem is very inaccurate. Men are afflicted just as women are. Every age bracket suffers - the very young, very old, and every age in between.

Everyone's battle is unique. The only thing that is a constant is the danger. A paper by Papadopoulos studied more than 6000 individuals with AN over 30 years using Swedish registries. Overall people with anorexia nervosa had a six fold increase in mortality compared to the general population. Reasons for death include starvation, substance abuse, and suicide. Importantly the authors also found an increase rate of death from ‘natural’ causes, such as cancer. Source: NEDA By: Walter Kaye, MD, Professor of Psychiatry, Director, UCSD Eating Disorder Research and Treatment Program, University of California, San Diego One thing that is probably the most alarming to me (especially now, as a mother) is the upward trend that has steadily kept building. 

By age 6, girls especially start to express concerns about their own weight or shape. 40-60% of elementary school girls (ages 6-12) are concerned about their weight or about becoming too fat. This concern endures through life (Smolak, 2011). 

 

These diseases are serious business! Complications of Anorexia Nervosa:

• Abnormally slow heart rate and low blood pressure, which mean that the heart muscle is changing. The risk for heart failure rises as the heart rate and blood pressure levels sink lower and lower.
• Reduction of bone density (osteoporosis), which results in dry, brittle bones.
• Muscle loss and weakness.
• Severe dehydration, which can result in kidney failure.
• Fainting, fatigue, and overall weakness.
• Dry hair and skin; hair loss is common.
• Growth of a downy layer of hair—called lanugo—all over the body, including the face, in an effort to keep the body warm.

A review of nearly fifty years of research confirms that anorexia nervosa has the highest mortality rate of any psychiatric disorder (Arcelus, Mitchell, Wales, & Nielsen, 2011). Complications of Bulimia Nervosa

• Electrolyte imbalances that can lead to irregular heartbeats and possibly heart failure and death.
• Electrolyte imbalance is caused by dehydration and loss of potassium,sodium and chloride from the body as a result of purging behaviors.
• Potential for gastric rupture during periods of binging.
• Inflammation and possible rupture of the esophagus from frequent vomiting.
• Tooth decay and staining from stomach acids released during frequent vomiting.
• Chronic irregular bowel movements and constipation as a result of laxative abuse.
• Peptic ulcers and pancreatitis.

Complications of Binge Eating Disorder (BED):

• High blood pressure.
• High cholesterol levels.
• Heart disease as a result of elevated triglyceride levels.
• Type II diabetes mellitus.
• Gallbladder disease.

There are other, atypical eating disorders like EDNOS  (eating disorder not other-wise specified**)  orthorexia, and diubulimia. 

**DSM has officially changed the EDNOS term and criteria to better diagnose the "gray area" category of eating disorders that many fall into. I will be writing a post on this later (8/13)

For more information on specific topics visit their Articles section. 

There is also a database of support groups/networks as well as recourse links 

 NEDA also provides free, online screenings and a click to chat feature in the help and support section. 

 

Advocacy Aspirations

Day 5 for the WEGO Health blog challenge is Aspirations. 

 We are supposed to write what our dream activism aspirations are. No limitations - money, time, health, or otherwise. We are told to dream BIG! 

Wow, no limitations? Really? That should make it easier, but it doesn't. I've become so used to my limitations that its hard for me to think outside of them. After a while, I started to grasp the idea and actually formed something - and through that "dreaming big" I was able to find things that were actually with in my limitations. Coolness. Identifying these aspirations helped me realize what I really want to advocate about and what isn't all that important to me. 

Chronic illness - yeah, I have them and they suck. I have battled them for years. Yet, I know so many other people who are doing an amazing job advocating for them that I don't really feel the need to (Living With Bob and Just Mildly Medicated, I'm talking about you!) That leaves me with EDs and special needs. These are equally important to me. I watched my family struggle to provide what my sister needed (wheelchairs, specialized therapy, modified housing and vehicles, etc) and I know how hard it is. My ED almost took my life. The fact that it was so heavily influenced by the chronic illnesses I faced made it much harder to be properly treated. My Advocacy Aspirations ED (in order from most realistic to Dream Big No Limitations)

• Gain blog traffic
• Meet other advocates
• Be able to pay some bills with my blog
• Link up with NEDA and participate in events and
• Speak at events
• Host an event
• Link people together with organizations who can help
• Help place people in treatment centers/ help fund their treatment (it's ridiculously expensive and most insurances don't cover them)
• Start a charity or program of some kind

Special Needs (same order minus the "blog" stuff because, well, it's the same blog)

• Raise awareness
• Link families together with local resources and support networks - and through that, help families obtain those critical things that are so hard to get: wheelchairs, therapy, lifts, prosthetics, braces, etc.
• Link families together with enrichment organizations/events (recreational, fun stuff)
• Help my mom start her non-profit