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

Special Needs Links/Resources

        
*Autism and Autistic Community Links*(for all ages, not just kids)

The Autistic Self Advocacy Network (ASAN)

http://autisticadvocacy.org

The Autism National Committee

http://www.autcom.org

Autism Network International

http://www.autreat.com

Autism Women’s Network

http://autismwomensnetwork.org

AASPIRE (Academic Autistic Spectrum Partnership In Research and Education) 

http://aaspire.org

Autistic Hoya

http://www.autistichoya.com/p/about.html?m=1

TAAP

http://www.taaproject.com

The Caffeinated Autistic (this is a great blog)

http://thecaffeinatedautistic.wordpress.com/tag/autism-speaks-doesnt-speak-for-me/

*Disability Advocacy Links*

TASH 

http://tash.org

ADAPT 

http://www.adapt.org

R-Word 

Meet The Wrights 

It Starts With A Voice (video) and Facebook page   

*Cerebral Palsy*                                

CerebralPalsy.org 

Cerebral Palsy Alliance   

NDSS - (National Down Syndrome Society)

My Sister

I have a sister (2 yrs older than me) and anyone with a sister knows how is is both annoying and amazing. My relationship with my sister has always been just like any other sibling relationship. We fought growing up and had our fair share o sibling rivalry. My mom recently told me about one incident when we were quite young (young enough that I don't remember it). We were eating dinner, my sister and I were sitting on opposite sides of the table. My sister started to yank the table towards her, so I yanked it right back. This went on for a while, the two of us yanking the table back and forth. My mom was sitting there, laughing, and couldn't help but enjoy the sibling squabble that was so "normal" being displayed in front of her.

  Why would my mom be happy about a "normal" sibling squabble? Because everything else was so "abnormal". My sister has severe disabilities. She has been diagnosed with sever (like, farthest end of the spectrum you can get severe) autism, cerebral palsy, and epilepsy. As a child and teen she was very abusive (towards herself and others) and our mom was constantly covered in bruises. She actually broke our mom's cheek bone once. Many people told my parents to write her off, to put her in a special facility. They never did and never would. My parents' strength was and is superhuman. There wasn't a lot of resources then, so our mom would come up with ways to adapt things for my sister. Her innovation is incredible. My sister needed a bed that was safe, but she was too big for a crib - so my mom and dad made one out of pvc pipes to fit a twin bed. They covered the pvc in large pool noodles and then our mom hand sewed strong mesh around every side. My sister would rip the mesh almost every night and my mom would sit there and sew it back together the next day. She also came up with pj's that she couldn't get out of but buying denim vests and jeans and sewing them together with a zipper in the back to make soft denim coveralls.

Growing up, I loved my sister but man did she get on my nerves! Family outings were dictated by whether or not my sister would allow it. If she was having a bad day, we canceled. If we actually went out and then she abruptly needed to leave, we did. Growing up this was annoying and sometimes hurtful. I would be excited to be going somewhere only to have it canceled because my sister was acting up. I understood it and knew it was right to cancel but the "child" part me was angry. She still can get on my nerves. She has always loved music and needs something playing at all times. She also loves Raffi (not just any Raffi, one particular video on repeat) and prefers that be playing at all times as well. Now, in all fairness this is a major improvement. For years (I mean like 10 year strong!) she loved Barney. Yeah, I don't think I need to explain that one at all. You all are groaning right along with me. Seriously, you know it's bad when you catch your dad signing Barney songs in the shower and when you ask him about it he has no recollection of the event at all. Or when you hear it playing in the background of your dreams. Yeah that's fun, let me tell you! She is non-verbal, but very loud. The neighbors can hear her screaming with all of our doors and windows closed. I love her to death, but she can be such a pain in the butt!

I'm allowed to say that because I'm her sister. She will be 30 soon and still lives at home. She is still as loud as ever but much calmer. She seems happier, more relaxed. That makes me so happy. There are still rough days and her health is slowly getting worse with every passing year, but my family is committed to giving her the best life we possibly can.

My childhood may have been different, but I wouldn't want to have any other sibling in he world.

Mora Moments

I have often described my parents' home as an... unusual place. My long-time favorite would be 'The Asylum',which I coined somewhere around age thirteen. Yeah, I know, it's not nice to call your mom's house an asylum - but seriously, it's not a negative thing. It's an ode to the vast chaos that goes on and how everyone in the family has grown accustomed to it. It's endearing. Why do I call it 'The Asylum'? Well, let me give you some background information. 

My parents' house is always very busy and loud. Very loud. It's "Fellowship of the Ya-Ya Sisterhood" meets "My Big Fat Greek Wedding". My sister (2 years older than me) has severe autism, cerebral palsy, and epilepsy. She is much calmer now, but as a kid she was very aggressive. More often than not, she is hollering about something. My mother's family is Greek and is all up in each other's business. At any moment they may show up and abduct you! I actually really like that, though. My dad is quite a bit like Shep from Ya-Ya, only not so much the innocent bystander. 

Ya-Ya Sisterhood, Sidda talking to her father, Shep: "and the inmate takes over the asylum." - Sidda. "No, it's more like Stockholm syndrome." - Shep 

Exactly!

Add in some animals and you pretty much have the whole picture.

The animals in our family have always had more of a supporting role in the chaos, that is, until Samora. 

My cousin called my dad up one day and told him about this littler of puppies a neighbor had. My cousin became increasingly aware that these puppies were not going to have a good future. The owners didn't want them and just wanted to get rid of them.The mother was a chow, and my dad loves chows. No one knew who the father was, but the puppies looked like pure chow. So my dad drove up and took a look. This adorable little 8wk old puff ball, bouncing around,ended up coming home with him. That first car ride should have been the tip-off. Samora rode on the passanger's seat, inside a small cardboard box. Apparently, she was able to wrestle her way out of the box and go all Cujo on my dad. This little 8 wk old puppy tore him up like a wolverine. I had never been scared of a dog before, especially not a little puppy. But this thing was crazy! We all started calling her Taz since she embodied the little devil so well. Anything was fair game. If I wanted to go to sleep, I would barricade myself with anything and everything in my room. It wasn't much help though, because she would just climb the whole thing. If I was working on homework, well, forget it. Those jaws were shredders. If I wanted to go on my trampoline I had to throw a stick a far as I could, wait for her to chase it, and make a mad dash for it - hoping I made it in time. It was clear that this was not a "normal" dog, she was something more. Something wild. My dad and I did as much research as we could on raising dog mixes, in case that was, in fact, what we were dealing with. In time she became a wonderful addition to our family. She is 12 years old now and is just as "different" - think of her as an extreme version of Marmaduke. She our little Miss Priss and I love her dearly.

It seems like everyday that dog is doing something that makes us go "what is the dog doing?" Or better yet, something that makes us go "Good grief Mora, it's really ok." So I've decided to capture these little Mora Moments. Enjoy! 

The What and Why of Sapling Stories

So I recently (recently, as in like, 2 days ago) found out about WEGO Health and decided it was a good fit for me. So I'm giving it a whirl! WEGO has a challenge this month with writing promos for each day - the "every day" part was almost enough to send me packing right there. I was planning on cranking a quick recap of the couple of days I had missed the other day, but my body had other plans and I ended up having seizures instead. Fun. So here I am to try again!

Day 1: Why do you write? I started this blog as an outlet and actually intended it to be a family-oriented, positive parenting and pre-school activity type blog (hence the name "The Sapling Stories). As I met other bloggers and become more aware of the blogging community, my content shifted. With out realizing it, my blog became centered around awareness. Awareness for things I feel very strongly about. I just naturally started writing about them. The main one that I feel grabs my attention the most is eating disorder advocacy. I am a survivor (I feel like I should say "surviving" because recovery is a continuous thing that never really ends, or at least it hasn't completely ended for me) Actually, I had a support blog years ago on Xanga (I said it was years ago), but stopped for some reason when everyone was switching over to MySpace (my husband was also deploying for the first time and everything was kind of topsy-turvy). I battled stereotypes, stigmas, myths, and death. Now that I have children it scares me sh*tless that they might battle the same demons. My other two are Autism (special needs in general, really), and chronic illness. Special needs because of my sister and chronic illness because, well hell, that's what I've been dealing with for most of my life (that is also a huge factor into my battle with anorexia/bulimia/orthorexia - seriously, eating disorders are much more complex than society thinks!). I have found a support network in the online community that I was desperately lacking before And it has been amazing.

Day 2: Tell a bit about your conditions, 5 things you want people to know about them, and a few links to other articles you've written. Note: My links will be highlighted throughout, not listed separate ;) I kind of just covered the "what", so here's the 5 things: 

  Eating Disorders

1. Eating Disorders do not discriminate! It is not a teenage white-girl affliction. Every age group, of every ethnicity, of every walk of life is affected.
2. You can't tell anything by a person's size. Just because someone isn't rail-thin doesn't mean that they're not suffering.
3. It's not about food - not completely. ED's are complex, very complex.
4. You can't just "snap out of it" or "get over it". It takes time and will be the hardest thing you've ever done. For me it took a year of grueling, intense hospitalizations (including NG Tubes, IV TPN through a PICC, oxygen therapy, and missing my entire senior year of high school) and several years of outpatient treatment. 
5. It starts way earlier than you think. I can remember being preoccupied by the need to be "perfect" as far back as I can remember. I'm talking age 5-ish. And let me make it clear - No one ever implied that I needed to be "perfect". It's not all a societal thing, genetics and brain chemistry contributes greatly.

Autism and other special needs:

1. Just because someone has special needs (may it be cerebral palsy, autism, Down's syndrome, or anything else) doesn't mean they can't hear you (to all the smug trolls: if they actually cant hear, they still know) They know when you're being mocking and judgmental, and they feel the pain as much as anyone else.
2. The R-word is not okay. Ever.
3. Even though my sister functions at an 18month old level and is non-verbal, we still have sibling rivalry. We get into fights and argue just like any other siblings.
4. Everything has to be adapted. That bed you just bought? Yeah, that's gonna have to be modified so it's safe.
5. Everyone has to be flexible. Just because you planned a day trip to the beach that you have been looking forward to for weeks doesn't mean it's going to happen. You may get half way there and need to turn around because its not a good day for them - and you'll completely understand and go with it. Even when you are 7 years old.

Chronic Illness:

1. Everyone needs to read The Spoon Theory
2. Just because someone's in a wheelchair doesn't mean they are paralyzed.
3. Believe me, I do not want to be in bed all day! Don't give me that "must be nice" bull. It's not and it isn't funny.
4. Dear doctors: When I come in to see you and I explain what's been going on, do not look at me like I'm insane. Even if my vitals are fine, just take the damn time to check it out.
5. Just because a had a good day (or week or whatever) yesterday doesn't mean that I'm going to have a good one today. No, I don't know what's wrong or why I'm worse today when I was "fine" yesterday. I wish I did.

Day 3: Post a picture that captures your condition/your experiences 

HAWMC Day 13

This was actually a little more difficult than I had originally thought. Well, no that's not entirely true. It was pretty easy until I had a flair-up the other day, after that it was quite... Interesting. So with out farther adieu, here are my random acrostic-esque words.  

• C - constant
• H- hope
• R- rising
• O- over
• N- no
• I - improvement (or)
• C-  cure
• A- and
• L- listening (and)
• L- learning
• Y- you

 

• A- are
• W- what
• E- encourages
• S- spoonies
• O- over
• M- miles
• E- everywhere

• E- ever
• P- perplexing
• I- illness
• L- leveling
• E- entire
• P- pathways,
• S- short-circuiting
• Y- you

• E- excruciating
• A- and
• T- testing
• I- illness
• N- never
• G- granting

 

• D- dreams.
• I- incessant
• S- serpent
• O- owning
• R- reality,
• D- decaying
• E- every
• R- real
• S- sentiment

 This one I did not come up with. It is perfect, so I'm not going to mess with it ;)

• A- always
• U- unique,
• T- totally
• I- interesting,
• S- sometimes
• M- mysterious