Written by Skylar
As previously mentioned, I have Asperger’s. I am proud of it, god dammit it. I mean, it makes my life more difficult at times, but it’s shaped who I am. I am comfortable with it.
Category Archives: Boycott Autism Speaks
Written by Skylar
Please, ask congress not to call Autism a disease that needs to be combated. As a hyperlexic, what I want is respect, not to be vilified. I need help getting accommodations instead of help making me act like everyone else. It’s a disability, not a curse. We don’t need to figure out how to prevent autistics from being born. What we need is help with what to do after birth. Adult autistics ar…e especially ignored, even though we still need assistance with some things. Also, Autism isn’t as bad as they crack it up to be. It need not lead to a life of drudgery. With proper family support and, if needed, communication assistance devices a great life is not only possible, but probable.
Autistics can go to school, work, get married, and have families like everyone else. This includes non speaking autistics, by the way. Just because someone sometimes needs to flap their hands to relax or focus doesn’t mean that they can’t get a job. Not being able to speak shouldn’t be a barrier to anything. Nor should being able to speak be considered superior. Someone can be autistic and speak, or autistic and unable to speak.
Someone can be autistic and very social because autism isn’t the same as being antisocial. I may have to leave the room for a quick nap, but not because I want to leave, but because things are getting too noisy for me to handle and I need to get rid of a migraine. However, that doesn’t stop me from wanting to be there. It’s just that I learned to be able to figure out when I need to leave and when I need to stay. There is no shame in having figured out ways to deal with stress.
Now you are probably wondering why I want you to boycott Autism Speaks. I mean, you probably think they are a good organization. However, you have been wronged by them. They are telling people that Autism is an epidemic, not true, there were as many autistics in the past, they just went underdiagnosed or misdiagnosed or were simply murdered. This is like saying there was no ADHD before they came up with the diagnosis. That would be ridiculous. The same is true of Autism.
Autism Speaks also supports the Rotenberg Center, where they use electric shocks to discourage any “non-compliance” as if they were dealing with bad dogs and not human beings. They still defend the idea of shocking a man (while laughing at him, by the way) for three hours for not taking off their coat inside. They have this on video, too. By the time they were done the guy had to be hospitalized because he was non responsive. They haven’t apologized for this and Autism Speaks has no problem with this.
Autism Speaks also spends the majority of their money on trying to prevent autism or to cure it. A paltry 3.5 percent of their budget goes towards treatments like the one I just mentioned. On second thought, that’s probably a good thing.
They also encourage stopping all autistic behavior to make the person appear normal. This means they have to vilify all autistic behavior, no matter how benign. Say an autistic likes to tap their foot, then that has to be stopped. Or say they don’t smile at the right time, that has to be fixed. Perhaps the autistic likes to wear a certain color all the time, that has to be stopped. Or the autistic likes to spin in their chair, oh no, that absolutely has to be stopped.
This is why I don’t like Autism Speaks. They hate autistics simply because they don’t act like everybody else. And according to them they need to be the same. The world needs to be whitewashed perfection with no color left in it at all. And to be honest, I don’t want to ever see a world that bland and that free of disability.
Image Description: Black Box with white surrender flag.
Text: Surrender is powerful when your war is unjust.
Peace, Love, & Support for Autistic people.
The Combating Atutism Act expires this fall. As written, it is a source of national shame.. It is, therefore, imperative that this legislation be completely overhauled. Or it must not be renewed.
My Autistic child will always be my child. But someday, she will be my adult child. I regularly get grim glimpses of her future through my involvement and friendships with Autistic adults.
The vast majority of Autistic adults that I know, and I do know many, live in crushing poverty–constantly facing lack of suitable employment opportunities, deciding between heating their homes or buying food, denial of access to needed medical treatment, and so much more. They lack the supports and accommodations that they desperately need in order to survive.
Autistic people, particularly Autistic adults, have been forever under-represented and under-served. Our legislators have failed to incorporate input from those that Autism legislation is intended to serve–that is, of course, assuming that Autistic people are the intended beneficiaries. It would be unthinkable to pass legislation which dismissed the advisement of the population of any other minority group that it is intended to serve. Not the parents/caregivers of those minority groups. Not the big name “charities” claiming to represent the interests of Autistic people, all the while, completely excluding them from meaningful participation. But the stakeholders themselves.
My eight year old daughter deserves a future and Autistic adults deserve a present. They are entitled to essential supports across their lifespans. Reallocating funding so that she, and other Autistic people, have access to education, employment opportunities,medical treatment (especially preventative medicine), etc. will serve the interests of both the Autistic community and the country as a whole.
And for the love of all things holy, rename the legislation. Combating Autism Act? That’s a disgrace. It underscores the fact that the current legislation is focused on eliminating Autistic people rather than supporting them. Using violent language to describe legislation allegedly designed to enhance the lives of Autistic people and their families is reprehensible. It is, in effect, sanctioning the dehumanization and discrimination that Autistic people, including my child, face every single day.
Enough combating human beings. Not nearly enough support.
Written by Eric Warwick
In 2006, then President George W. Bush signed a law–the Combating Autism Act (CAA)–at the behest of Autism Speaks and their allies in congress. The law would appropriate .950 billion dollars of money to the National Institute of Health (NIH) to search for the following things: find the cause of Autism, search for a genetic trace-marker for pre-natal testing and selective abortion, find a way to make Autistic people be non-Autistic–a “cure.” There was also an appropriated 2.4% of funding to improve services for Autistics and families with an Autistic child. Those services are largely Applied Behavioral Analysis–a technique once used to “cure” people of homosexuality. The Combating Autism Act passed unanimously in the Senate after it was introduced by the frothy mixture of lube, fecal matter, and semen Senator Santorum and Senator Chris Dodd. In 2009, President Obama signed the Combating Autism Re-Authorization Act (CARA) which appropriated a similar, but higher, amount of money towards research.
The Combating Autism Act is designed to remove Autism from America. It is designed to find ways to suppress Autistic behaviors such as stimming and our unique forms of communication. In function, it has given government legitimacy to the idea that I am a part of a Autism Epidemic. My own government invalidates the possibility of my humanity, since I am Autistic. It lends credence to idea that rather than my being Autistic meaning I simply experience life in a different way, with different access needs, that does not lessen the inherent value of my life or any other Autistic–verbal or not–that, instead, I am diseased, a scourge that must be eliminated. Although there is an understanding that Autistic adults (or teenagers in my case) exist in some vague form–this act is about preventing a new generation of Autistics. In the words of the majority opinion of Buck v. Bell: “three generations of imbeciles is enough.” I am not a person; I am a disease. I am not a person; I am part of the apocalyptic Autistic Tsunami that will destroy the lives of my parents and burden society. To my government, that is me, because I am Autism–I am Autistic. Look no further than its name. I need to be combated.
In 2011 with Republican control of the House of Representatives, the United States Federal Government passed legislation that cut the Supplemental Nutrition Assistance Program (SNAP/Food Stamps) by a comparable amount of money of each CAA and CARA. Countless impoverished Americans grew hungrier and saw their social safety net shrink. The questionable use of money in CARA continued. This is not justice. The pangs of hunger exploded on a nation reeling from an economic catastrophe that is comparable to the Great Depression and Autism is the epidemic. The epidemic isn’t stagnating wages or high rates of suicide and murder in transgender communities of color–it’s Autism. It’s a neurology difference that people find “strange” and therefore must be eliminated. That’s the real issueto my government. My government could care less about the rape, exploitation, and murder of indigenous peoples–it cares too much about the systemic elimination of Autism by means of selective abortion and possible “cures.” What just government would support this? What government would decide that the denial of a safety net in times of need whilst supporting a program to eliminate a Disability is a good, even preferable idea? Not one that any I know of voted for. Of the choices to spend our country’s money, why did CARA get chosen? It’s because of special interests.
Autism Speaks (formed in 2005) has a large budget. They are the largest Autism related organization in the world. They spend 44% of their budget on research into the causes, “cures,” and genetic signature (for pre-natal testing/selective abortion) of Autism. They spend another 43% on fundraising and advertising. They spend their remaining money as follows: 5% for administrative costs and salaries (there are a few hundred employees); 4% on grants for services; and another 4% on “other” costs. More information here: http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf . Their research money has, in the past, even included research into the already at that time thoroughly debunked link between vaccines and Autism. Why do I mention this? It’s because CAA and CARA are, in many respects, a subsidy to Autism Speaks. It allows Autism Speaks to spend more of their money on dinner parties for high-profile celebrities like John Stewart, Steve Carrel, and others than on research–which in it of itself is for questionable aims.
Our government could be feeding the hungry, clothing the needy, and providing for the sick, but instead it has decided at the insistence of a powerful lobby–which has no support of the people they claim to represent–to instead fund hatred in intent and practice. It cannot be allowed any further. I ask the people on the HELP committee to kill this bill. Still, if they do care about the lives of Autistic people, then a bill to secure needed services to Autistic adults would be appreciated. That would be a just use of our country’s money.
Harkin, Warren, Mikulski, Murry, Sanders, Casey, Hagan, Franken, Bennet, Whitehouse, Baldwin, Murphy, Alexander, Enzi, Burr, Isackson, Paul, Hatch, Roberts, Murkowski, Kirk, and Scott, please stop combating me.
Sincerely, Eric Warwick. (By the way, Senator Murry, I am one of your constituents.)
By Natalia Erenah
Before I had children and early in the parenting journey, I thought it was my job to mold my children into kind, intelligent, and self-sufficient beings. That they would speak properly, have good table manners, be polite, and do well at school was presumed, a baseline. These were my assumptions before autism rocked my world, before one child was diagnosed autistic, before I realized the other two were anything by typical. Diagnosis and confusing-to-me behaviors did not immediately change my perception. I simply resolved to work harder to mold my children into the kind, polite, intelligent, and self-sufficient beings they were supposed to be.
I ALWAYS loved my children. I always strove to be the mother they needed. I did my best to be patient and supportive. But I did believe that it was my job to make them be/act/appear as normal as possible. For me, normal meant following the rules of society, exercising self-control, learning, and growing. I did not believe my goals for them were harmful. I believed it was my mother-duty to raise children who fit in, because that’s what my life experiences had taught me was correct.
As time went on, my understanding shifted. I watched my children. I embraced what made them smile and rejected that which caused them pain. I read amazing books that revealed a new way to look beyond the face value of “behaviors” and “traits.” I discovered something wonderful where others saw misbehavior and dysfunction.
Finally, c. 2008, I wrote this in my journal:
Last week I had an Ah-ha! moment. I realized I need to stop trying to fix my children. I love them with all of their sometimes challenging traits — but I have, for a long time, been on a mission to minimize those quirks. For now, I need to let them be — as important for me as for them.
A later journal entry: I have long known that there is a purpose for autism. I am slowly muddling through what that purpose is. I believe that everything is evolving perfectly and the purpose is being served — even if I don’t understand it.
It took me a long time to get here. (I tell the story of my parenting journey, and those of many other mothers, in Swan Mothers.) I still get plenty of opportunity to practice. Many resources that are available today, specifically, blogs written by autistic adults, were not available when I started this journey, so I continue to uncover new layers of understanding. I still want my children to be kind, polite, intelligent, and self-sufficiency beings, but I want them to be these things while being fully themselves.
By Cara Creager
Some days, your patience just runs out.
Some days, you aren’t in the mood to educate the twenty-third person who insists you aren’t really autistic, that you’re doing it for attention. Some days you’re over the ignorant person who sees you stimming and suddenly is done with their drink, running as if you’ll bite their neck and infect them with the scourge. Some days you give up, sure you’ll never find a job because despite your doctoral degree and sterling qualifications, no one wants to deal with your “quirks” and you can’t just become a Wal-Mart greeter because that long on your feet having to deal with people would cripple you.
Some days you see that another parent or caregiver has murdered an autistic, maybe killed themselves too. The comment sections on those articles are rough – if you look at the comments when a normal child is murdered, they’re united in throwing the parent into Hell (massive trigger warning for violence on that link!). But when an autistic child or adult is killed, you see apologism. They say “walk in the mother’s shoes” (massive trigger warning for ableism on that link!). [sarcasm] Cause killing us is a mercy, of course. [/sarcasm]
Some days you might go nonverbal – even us “high functioning” autists have those days. Some days your voice feels too small, so you don’t want to use it, or you feel too scared to even think about letting your little words fly against the overwhelming tide. There are other ways to communicate, but chances are, most people don’t know about them. There’s no money for AAC devices, for letter boards and iPads, for ASL tutors. [sarcasm] That’s not real communication anyway. [/sarcasm]
Some days you want to get involved, but can’t – because the leading organization in this country that purports to speak for us doesn’t want us involved. Autism $peaks has no autistic board members – the last resigned in disgust following Suzanne Wright’s Nov. 11 op-ed that described us as “lost”. We are not lost.
And then you see Congress “Combating” Autism. “Treating” the “national healthcare crisis.”
Has Congress “combated” anything you deal with on a daily basis?
I didn’t think so.
Don’t combat autism. Combat stigma. Combat fear. Combat prejudice and ignorance.
Combat those who think we need combating.
Because most days, I don’t have patience for that crap
Nattily from Notes on Crazy
My identity is not your enemy. #StopCombatingMe
When I was seven or eight, a friend told me that some people have “photographic memories” and explained what that meant. She dove into the pond. I sat on the dock and thought to myself, “That’s what I have. I have a photographic memory.”
When I was in high school I read a webcomic mentioning “super-tasters.” I looked it up, thought about it for a while, and thought to myself, “That’s what I am. I’m a super-taster.”
When I was in thirteen, people in my middle school started calling each other “gay” as an insult. I still hadn’t had the sex talk, and I spent most of my free time thinking about what exactly sex was, since I knew I was supposed to know about it and it wasn’t ok to ask. I didn’t know what gay meant, and I decided for myself that it meant “someone who thinks about sex a lot.” I sat in my eighth grade honors algebra class solving systems of equations and thought to myself, “That’s what I am. I’m gay.”
Over the years I have decided that I have red hair, that I have hazel eyes if you look really close, that I have this health issue or that health issue, that I’m agoraphobic, that I am schizophrenic, that I am defined by any number of things that are not only not defining identities, but not necessarily true of me in the slightest.
The summer after I turned twenty-five, I did a lot of research on autism, in particular how it looks in adult women. I sat on my bed, scrolling through blog after blog and clicking link after link, and I thought to myself, “That’s what I am. I’m autistic.”
The difference is, of course, that I am autistic. Wholly. Completely. It is precisely who I am. I cannot be separated from it.
When I thought, “I’m autistic,” I began to cry, and I didn’t stop for a few days. Sometimes I think I still haven’t stopped.
I cried not because I was sad or frightened or angry that I was autistic, but because I was sad and frightened and angry about putting the pieces together in that moment. I cried in relief, and in grief.
If there is one indisputable fact about who I am, it is not necessarily that I am autistic. It is that I have known my whole life that I was different. Not better, not worse. Different. I have always known, and I have always looked for the solace that would come with putting a word, an image, a lemma to what exactly made me different. The difference that I could see so clearly, and that everyone else ignored because they could not name.
I have been labeling myself since I could speak. I have been searching for the magical word that could fill in the blank – “I’m something” – and would let me rest.
I’m not a hypochondriac. I’m not a pathological liar. I’m not making anything up for attention. And you never know, maybe I am like your child.
I never told anyone that I had a photographic memory. I never told others that if you looked in the right light you could see that my hair is really red and my eyes are really green. I never asked a doctor if maybe I might have schizophrenia. I never acted differently when I considered these options or asked anyone to treat me differently I never asserted to any other person to be any of these things. I just tried them on for size, in my mind, privately, safely. Some I held onto for a while; others I dismissed almost immediately. Some were actually true (I really am a super-taster), but I realized quickly that they were the right answers to the wrong questions.
Now when I ask myself the question “Who am I?” I’m not haunted with isolation, shame, and uncertainty.
I know the right answer. I am autistic.
I am not defined by a disease. I am defined by myself. By the entirety of who I am and how I operate. How I think and sense and speak and behave. It just so happens that there’s a word for it. The word is autistic.
The word brings comfort. The word brings peace. The word brings community. The word brings identity. Hope. Love. Future. Past. Present.
Solace. Completeness. Empathy.
I am not interested in being anything other than exactly who I am. I ask you formally, articulately, concisely, and authentically: please…
…stop combating me.
#StopCombatingMe #BoycottAutismSpeaks #ActuallyWeLikeOurselves #SeriouslyWeAreSomeReallyAmazingPeople #TryListening
Amy Sequenzia for Autism Women’s Network:
We get together, we put on special and reinforced gear, we arm ourselves with weapons we know will, at least, hurt our enemy, or even exterminate the “evil”.
That’s the mentality, the current picture of a nation and a world so deep in wars, refugee camps full of diseases and despair, and of people without hope.
When I hear the word “combat”, I see men and women wearing heavy war gear, armed with machine guns and night vision goggles; I see an army of doctors and scientists, wearing hazmat suits, ready for a battle with the latest outbreak of a dangerous disease that can kill millions.
I am Autistic. I am very disabled and I need supports and accommodations. I am also an activist, with great plans for my future and with a lot to say. I am accomplished and happy. I have friends that I love and they love me back.
I am NOT:
Why do I have to hear my government saying that who I am needs to be exterminated, like the enemy or a disease?
Why are the hateful words of groups like Autism Speaks, which completely ignore the voices of Autistic people, more important than my right to exist?
Why is the complacency of other so-called advocacy groups considered more valid than the outcry of Autistic self-advocates and our families, friends and allies?
The Combating Autism Act spends more than 97% of its budget on research that seeks to find a cure for autism. Since a cure is not possible, the research moves to finding a cause for autism.
After that, comes prevention. Preventing me. Preventing people like me from being born.
Combat autism, prevent autism.
Destroy autism, prevent more Autistics from being born
Why is my government in the business of eugenics?
All this “combating” is an attempt to make the larger public believe that autism is an epidemic, that Autistics never experience joy, that our existence will bankrupt the economy.
This is fallacy.
I am Autistic and autism cannot be separated from me.
Combat autism, you combat me.
I was promised equal rights, which I am still fighting for.
Before that, I was promised the right to life. There were no conditions. I am a person, I have the right to be.
There is a lot we need to combat, exterminate, eradicate.
Autism is not one of those. Autistics aren’t either.
Let’s combat segregated housing
Let’s combat unemployment of Autistics
Let’s combat segregated classrooms
Let’s combat restraint and seclusion
Let’s combat silencing of Autistics
Let’s combat therapies that seek to “normalize” us, therapies that hurt us
Let’s combat lack of acceptance
Let’s combat ignorance
Let’s combat hatred
Let’s combat stigma
Stop Combating Me
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