I #BoycottAutismSpeaks for many MANY reasons. All of which every person supporting this hate group should see in order to realize what they’re REALLY supporting.
Written by : Savannah Logsdon-Breakstone
Originally posted HERE
A couple of months ago, my brother sent me a text. Did I want to go to the Autism walk with him and Em?
I did a quick google and found, as I had suspected, that the benefactor was Autism Speaks, and I responded in the negative. I also did my quick bullet points of reasons not to support them- not even the in depth version, just the elevator speech version. I also did another focusing on their media presence. Here’s a transcript:
Me: They promote a tragedy model of autism and act like the desire to murder your kid is understandable to have? Also they refuse to have any autistic people at all on their board and the one guy who was on their advisory quit because they didn’t listen to anything he told them. Only 4% of their budget goes to families. Most of the money doesn’t make it back to the communities it comes out of. Instead it goes to their media machine.
Wil: I see that’s lame as hell we were going to go but not anymore that’s way messed up.
Me: Next [time] you are on YouTube google Autism Every Day to see a mom talk about wanting [to] drive herself and her kid off a bridge IN FRONT OF SAID KID and not doing so because of her non-autistic child. Or the I Am Autism one where they took film from families not telling them that the voice over would be about autism destroying families. ❤[heart emoji] Thanks for listening!
Wil: Yeah I’ll check ’em out thanks for the info. We were gonna take her parent’s car and go ‘n bring you along but after hearing all that we were both like nooooope.
Continue reading HERE
Written by:Project Enigma
Originally posted HERE
There’s currently an ongoing campaign on boycotting the infamous organization Autism Speaks (not linking by purpose).
The boycott is organized in part through the #BoycottAutismSpeaks Twitter hash tag, as well as a flash blog running yesterday and today (Jul 17, 2015). I understand Flash Blogging as specific posts from people in their own blogs, as well as other submissions, being collected on the Flash Blog site maintained by Boycott Autism Speaks organizers.
You‘ll find many posts there already explaining on the facts about Autism Speaks, so I‘ll not repeat what has been said there. Just check the other articles for that. Instead I‘ll try a personal take.
What helped me for discovering being autistic and how so was seeing diverse voices of actually autistic people, sharing information from an autistic perspective, as well as sharing personal experiences, views and so on. I learned that being autistic is a spectrum. That it is a disability, and at the same time it’s a neurological variant that „just is“, that has no different value from other neurological variants, including being neurotypical. On top, part of the disability that can be involved in being autistic is caused not just by per se impairments inherent by how someone is autistic. Rather it’s often a mismatch between neurotypical norms and expectations and autistic people and our needs. This can involve a need to meet us in-between in communication style, offering supports for the sensory needs autistic people often have, often some kinds of Augmentative and Alternative Communication (AAC), from informal (such as fully accepting social media, email etc. as valid road of communication rather than valuing face-to-face or phoning over written) to formal (which I can‘t explain in detail, as I don‘t use them; see this video by Amethyst Schaber/Ask an Autistic including more links in the description section) and many more such mismatches or sometimes unmatched needs for adjustments.
What helped me is that I saw being autistic being displayed in an accepting manner, not as something akin to the end of the world.
Now, Autism Speaks propagates just the latter. (Please see the Flash Blog for factual details.) They portrait having an autistic child as a catastrophy happening to neurotypical parents (or grandparents, as the founders are). They fund research on eliminating autism more than they fund supports for autistic people and families or other people supporting them. They rather have research on prevention and elimination of autism rather than genuine research on how to improve life of autistics.
They also use „functioning labels“, which are problematic and inappropriate on their own, in political ways against autistic people. Either you‘re too „high functioning“ in their view to be autistic „enough“ to speak about autistic issues, or you‘re too „low functioning“ and thus are denied agency, so they speak over you instead of with you, or just listening.
They currently include no autistic people in decision making structures at all. The only autistic who was involved resigned. (Again, see links in other Flash Blog entries for evidence.)
And no, Autism just cannot speak. Autistic people can, and should be listened to rather than talked over.
So this is a short, more personal rather than factual, account on why I myself boycott Autism Speaks and why I ask others to do so too. If you have money to give and want to support autistic people, surely don‘t give to Autism Speaks. You might rather consider autistic-led organizations like the Autistic Self Advocacy Network (ASAN) and other similarly orgs by and for autistics.
This post may be shared and copied verbatim or edited. In case of editing, please make clear what is original and what is by you. And please, of course, don‘t misrepresent authorship. A link to the original entry, this blog, or my Twitter handle (@project1enigma) is okay to represent authorship.
Hi everyone. I don’t often make videos but this is an issue that is very close to my heart on so many levels. This is a message to the Autism and Neurodivergant community, to its fellow comrades to its supporters and even to it critics. I want to start off by giving a huge thank you! You have all touched the bottom of my heart and soul. You have all given me so much inspiration to want to advocate for myself and for my loved ones. After becoming an advocate last year they have been so many people to have guided me on this journey to become not only to help myself but to help others. They are a few autistic’s who I want to give a special shoot out and heads up to who have helped me on this journey
So Autism speaks, as you can see. I could have spoken about how much I hate you as an orginisation. But I wanted to show that autistics like myself are callable of love, compassion and humanity. I’m afraid I can’t say the same things about you. You use fear and ignorance to make our lives harder. This is why I boycott!
Originally posted HERE
Autism, for me, is…
The euphoria of listening to the right songs,
The extreme anxiety of facing public bathrooms,
The frustration of struggling through social situations,
The headaches from using Bath and Body Works,
The excitement of seeing my favorite bands perform,
The stress of allism passing,
The fun of cuddling my stuffed animals,
The depression of not feeling accepted,
The feeling of playing with my hair,
And everything that I am, whether good or bad.
Autism, for me, was…
Repeating my favorite 7-11 commercial,
Watching The Lion King over and over again,
Thumb sucking with the tags of my favorite plushes wrapped on,
Watching Barney obsessively,
Having meltdowns in public bathrooms,
Crying if anyone else played with my prized ATV toy,
Moving my hair out of my face while I played,
Struggling with elementary school homework,
Refusing your offer to beat up my classmates,
And everything that I was, whether good or bad.
These do not describe autism…
Burden on our families,
A global health crisis,
The end of marriages,
A cause for alarm,
A hopeless diagnosis,
Something to “battle”,
A reason for us to be pitied,
“As if your child went missing”,
Or a subject better understood by allistic parents or grandparents.
Written by: Michelle of Life with Quirky Boys
The original can be found HERE
Dear Katie, daughter of Autism Speaks co-founders Bob and Suzanne Wright,
I have two young sons who are both autistic. I’m actually autistic myself, but I’m writing to you as the fellow mom of an autistic child.
When my oldest son was little, there was a behavior he exhibited that worried me. It continued as he grew older and the thought that he would never overcome it scared me to death.
In trying to get therapists to understand both my distress and the urgency of his need for help in this area, I would comment that I was afraid he would still be doing this in college and, because of that, wouldn’t be able to live with a roommate. He was usually not in earshot or, if he was, seemed not to be paying attention to the conversation. It never occurred to me that he heard, let alone understood, what I was saying. It was before I censored my words in his presence.
Not that I lie to him or keep things from him, just that I try not to burden him with my own fears. Shielding him from my fears is part of my job as a parent. I’m the grown up; I need to deal with my own issues. I believe it’s good for him to see that I struggle with some of the same things he struggles with, but I can do that without burdening him with problems outside his realm.
Not long ago, I heard him repeat my exact words to a therapist; relating them as a fear of his own. He said he was afraid he wouldn’t be able to go to college and have a roommate because he would never be able to overcome this obstacle. This time he was the one who didn’t realize I was listening. It had been well over a year since I had spoken them myself, but the words still hung around him like a noose. My words coming from his mouth ripped my heart in two. They had affected him in a way I never intended. Or anticipated. They had increased his anxiety and chipped away at his self-esteem, essentially making it more difficult to overcome his challenge when it’s my job to make it easier. I would never hurt him, yet here was proof that I had done just that.
There was a beautiful post over at A Diary of a Mom this week called A Love Letter. It’s about the damage done to an autistic person when he, in this case, is subjected to poor treatment by members of his extended family. Treatment in the form of words suggesting that he is less than valuable as a person. The post includes a moving letter by Morénike to the child. I was particularly struck by the editorial note from Jess at the end: “The overwhelming consensus from my adult Autistic friends was this: It is a parent’s responsibility to protect our children from people like this until (if ever) they’re ready to accept them. There is far, far more damage done to a child’s psyche from those who refuse to understand than could ever be caused by a lack of contact with the same.”
I’d like to add that good intentions of the person making the comments don’t lessen the pain for the autistic person. Even if Uncle Joe is trying to help or understand, it’s the parent’s responsibility to step in and stop it, not to defend Uncle Joe’s intentions. That’s a hard lesson to learn, even for parents who are autistic themselves.
It was hard for me to learn and I will forever regret that I learned it at the expense of my child.
Autism Speaks hurts autistic people with its rhetoric that frames them as less than human. Much of that rhetoric comes to the public through the voice of your mother, your son’s grandmother, Suzanne Wright.
When Grandma Suzanne steps up to the microphone and claims that autistic people are essentially missing from their own minds and bodies, it hurts autistic people.
When Grandma Suzanne tells the world that the existence of autistic people prevents their families from living, it hurts autistic people.
When Grandma Suzanne tells us that autistic children are breaking their parents, it hurts autistic people.
Those autistic people she’s hurting include her grandson; your son. She is saying that your son’s existence keeps you from living your life. Even if you are not telling him directly that he has broken you, his grandmother is saying exactly that.
You may choose not to see it, but your parents are hurting your son. If you choose to stand with them, you’re hurting him, too. I promise he hears you and he will remember, whether he speaks it or not.
Originally posted HERE
Ableism has been engrained in our society for so long that even many of us Disabled people have been unable to escape internalizing ableist attitudes at least at some time during our lives. Certainly this is true among many people with acquired disabilities: having once been abled, it can be very hard to learn to accept the new reality of disability, and this can result in plummeting self esteem if the ableist attitudes are not faced and overcome soon after the person has become Disabled. And for those of us born to disability, internalized ablism is something that we have been taught from a very early age, whether by family, school mates, or teachers and other authority figures. And as such it can be so deeply entrenched that some of us actually believe ourselves to be “less than”, of lesser value than an abled person despite the fact that disability is a fact of life for most people at some time in their lives.
By: Leah Kelley at 30 Days of Autism
Originally posted HERE
H and I recently co presented as a part of the training for the summer staff of our local Community Living/Inclusion organization. This was a really fabulous experience for a number of reasons.
The openness of the staff to considering the ideas and perspectives being expressed was obvious, and very much appreciated.
For me it is particularly important to be able to feature H’s experience and perspective, not only because of my commitment to the idea of ‘nothing about us without us’ (and the specific commitment to this I have made regarding my presentations), and the impact this lived experience in expanding the understanding for others, but also because it empowers my son.
Presenting is such a powerful way for this young man to feel he has some agency and can take an active role in combating negative stigma. The role this has in supporting his healthy sense of self is critical to cultivating his advocacy skills as he transitions to adulthood. He is learning that his voice and perspective have value and matter.
As a parent, I also feel it is my responsibility to look for opportunities to encourage and support H in rejecting negative stigma. I want my son to stand strong against organizations and messages that work to tear him down, or shame him because of his neurology. If the negative messages about Autism were not so widespread, I might be inclined to shield him from such things, but the idea that Autism is a disease to be cured, or eradicated, and that Autistic people are tragedies and burdens, is so pervasive that this does not seem to be a reasonable option.
I shared this in our presentation, and I appreciated the response of the participants, particularly since my son is involved with this wonderful community based organization. I understood that for some, this might have been the first time they had heard about the problematic practices of organizations like Autism Speaks. I am pleased that they will now be in a position to look more deeply into this – and I shared the Boycott Autism Speaks site (http://www.boycottautismspeaks.com/), so that they are able to access information if they are curious to learn more.
I am encouraged that disdain toward Autism Speaks is becoming a mainstream response, as people who care about social justice and human rights become more educated about their practices. I intend to continue to work to educate others on the damage that this organization is doing with their unique combination of fear rhetoric, and a lack of inclusion and a silencing of Autistic people.
And I am impressed with our community based Community Living organization and their committment to inclusion and acceptance, which is evidenced in their desire to include H in their staff training.
H was asked what was important and why he liked participating with Community Living activities.
He responded without hesitation: “I feel accepted!”
And then… at the end of the day, Craig asked H how the presentation had gone.
And H had the best response of all:
“It was great! They didn’t just hear an impostor’s words. They found a person who is Autistic expressing themselves!”
Created by Erin Human
Posted At: https://www.tumblr.com/search/idrawhumans
Dear Autism Speaks-
Why do you claim to speak for my brother when his goals are not your goals? My brother is autistic and he loves himself. He has never expressed any sort of sentiment about wanting to change. In fact, he is quite happy the way that he is. He loves video games, movies, and anything to do with water. He has great friends, wonderful teachers, and an accepting community that provides him with opportunities. He does not want a cure. He is not sick. He wants to continue living as himself.
Why do you claim to speak for my family when you insist that my brother is a burden on us? My brother is autistic and we love him for who he is. He is our son and our brother and we are insulted that you paint him in such a light when the only burden we can see is the uninclusive way society functions. We are not stressed because my brother exists. We are stressed because society does not want him to.
Why do you claim to help the folks who are not as fortunate as my brother and my family are? Many autistic people do not have loving families, supportive communities, good teachers, and opportunity. We do not hear about them. Is erasing their existences your idea of helping? Or perhaps it is providing only 3% of your budget to “family services”?
Why do you claim to speak for autistic people when your entire board is allistic? You treat autistic people like puzzles- giant mysteries- when autistic people have been trying to explain autism to you for years. You are not listening, so you have no authority to speak. All of the autistic people who have tried to help you have abandoned you.
Autism Speaks, you insist that autistic people need to change in order to fit in in the world, but that is a lie. It is the world that needs to change so that autistic people can exist and be themselves. Every difficulty my family has encountered stems from society being cruel and unaccepting, not from my brother being autistic. Sure, I worry about my brother, but it’s not because of who he is. I worry about my brother because the world doesn’t treat autistic people as fully human. My parent’s are not burdened because my brother is not capable of having a future. They are burdened because society does not offer him one. I did not lay awake at night in high school because I was nervous my brother wouldn’t fit in. I laid awake at night because I knew many of the kids were ignorant and terrible and all at the fault of their own. My brother is not frustrated because his autism limits him. He is frustrated because he cannot express himself in ways that are deemed acceptable by an uneducated public.
And while society does a great job making sure ensuring the happiness of autistic people is incredibly difficult, you are busy increasing the stigma. You create short films with scary music insisting that autistic people tear apart families. You give voice to unintelligent caretakers who speak about hating their children while those same children are in earshot and capable of hearing and understanding. You use inaccurate terminology that autistic people have asked you time and time again to not use. You claim to give autistic people a voice when, in fact, you are just stealing the voices they already had so you can twist them and misconstrue them to fit your fear-mongering, money-making narratives.
Autism is not a disease. It is a way of being, and autistic people have been telling us what we can do to make that existence easier. They do not want a cure, so why are we ignoring them and funnelling millions of dollars into research for one? They do not want us to support Autism Speaks, so why are we ignoring them and continuing to support an organization that marginalizes them? Stop donating to them, stop buying their puzzle-piece stickers, stop using them as your philanthropy. I urge every single person who might come across this letter to read what autistic people have written and to listen to what autistic people have said. Allistic people have a duty to listen to those voices and to make the world more inclusive. To expect autistic people to change for our convenience is selfish, and it is a slippery slope. Autistic people will always exist and they have a right to be here and to live their lives with the same convenience that allistic people can.
And my brother? He is asking for much of the same, but he is ignored and forgotten by both allistic-run groups and autism advocacy groups who pride themselves on creating tools that are still not accessible to those who have an incredibly difficult time accessing anything. While Autism Speaks actively use folks like my brother to further stigmatization against autistic people, the fact that those who are supposed to be advocating for him leave him behind passively creates the same stigma. My brother has many autistic traits, but he exists too. His voice deserves to be heard. When anyone, especially Autism Speaks, claims to speak for him, they are taking the voice that he already has away. You are making him voiceless. You are creating his burden.