I’ve received a lot of inquiries as of late about why I and other people dislike Autism Speaks, and I think its important that people understand why I think Autism Speaks does not in fact support Autistic People, read more for some examples
Please not that the following is my personal opinion, and does not express the views of anyone else.
- Autism Speaks as far as I know does not have one Autistic Person making policy decisions on what the organization will lobby, spend research money on, and portray autism as in the media.
- Autism Speaks continues to portray Autism in a very negative way, using phrases such as “disaster”, “hopeless” and “epidemic”. While I’m aware that there are some challenges that come with Autism – its not all negative.
- Autism Speaks implies by its name, and how it interacts with the media that it is the ultimate authority on what Autistic People need – its not.
- Autism Speaks continues to bully, threaten, harass and intimidate Autistic People who stand up against their organization.
- Autism Speaks’ negative portrayal of Autistic People has caused many people significant hardships in social interaction – more so then what Autism in itself would cause.
- An Autism Speaks employee who has an Autistic Daughter said in a widely distributed and often aired on television documentary that she wanted to drive her Autistic Daughter off a bridge.
- There is no accountability of where the money donated to Autism Speaks goes.
- Autism speaks uses legal threats to bully those with Autism that are advocating against Autism Speaks.
Its these reasons, and many others that make me want to make a stand against Autism Speaks – because its time for them to listen and learn how they harm the Autistic Community by speaking.
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{ 17 comments… read them below or add one }
What the h*ll is wrong with those people? Especially the one that said she wanted to drive her daughter off a bridge! Thank you so much, Zach. Every time I say that Autism Speaks can go f*ck themselves, people look at me like I’m crazy. Now I have written proof that they are just a bunch of heartless bullies spreading lies and bigotry! *prints out article* Thank you again!
I just put up a post regarding this article at autistics.org/forum. I’ll get back to you on how people respond.
Even worse, the person who made the statement about driving off the bridge wasn’t just an employee, but a *vice president* of the organization.
It’d be nice to see some sources.
hi I have aspergers and live in australia. I have never heard of Autism speaks before but hope to learn about them and therefore must keep an open mind but I must say what you are discribing sounds distressing unfortunatly this atitude is directed at all people with some form of special needs such as dyslexia e.t.c. I have faced discrimmination my whole life and am angered and saddened everytime I hear a discrimmintive comment about people with special needs e.g retard, spazz. when I was ten I lived in a difficult area where there were special needs facilities when I was about ten a large group of people attempted to assualt and occasionaly attempted to kill people for having special needs I was one of those people who were attacked I left the area and moved to coffs harbour when I was twelve the intolerance and iggnorance directed at any people with some form of special needs must stop. We are all different and if my differences are so hard to live with then perhaps it is possible the problem is with much of soiciety’s views instead of with me. I of course do not belief everything should be tolerated such as cruelty or actions that may hurt others but I believe it is wrong to discrimminate against poeple who are radically different. As such I am concerned with people who believe being called gay or retarded is an insult or a joke. Although if the joke is made to get people to laugh with people with special needs or who are gay instead of at them than I am cool with it as i that there is a difference between laughing with and at.
Hi Sam, I am the mother of a teenage boy with aspergers, I am trying to find others in the Coffs Harbour area, that both myself and my son can talk with on the same level. Not sure if you can help but not getting much from the internet. Any ideas would be appreciated. Thanks
Well, I’m never in favour of being harassed for a disability. I’ve got bi-polar, a learning disabilby, partial blindness and a permanantly lame foot.
Yet, I’m being continually harassed, for over a year, on the internet, by an autistic teenager—I used to know his mom from her blog, and she’s not all there (genuinely believes in spirits and fairies), and she’s admitted her son was stalking me.
I’m told I can do nothing to this boy, who is making life on the internet a misery for me.
I’m sorry for autistic kids…but it’s hard to be sorry for a child who is mean. He takes special delight in harassing me when I blog that I am seriously ill (I have a potentially fatal illness too, by the way), or experiencing a crisis of some sort. But…hey, it’s taboo for me to pick on him, cos’ hey, HE’S autistic.
No one ever takes into account, the harm unsuprevised autistic people do, to innocent by-standers.
I mean, why is it OK for autistic kids to bully people like me, but not me to bully him back? OK, sure, as an adult, me bullying an autitic child after he’s bullied the hell out of me, would be beneath me…but sorry, after my experience for the last year with this kid from Minnesota, I have NO sypathy for autistic kids who get bullied.
You know what? I’ve been bullied for over 40 years, based on my looks, my weight and my learning disability (dyscalculia, and borderline DCD).
Get over yourselves! Bullying is a fact of life, that some of us never can escape from, no matter how old we get…the human race if full of human turds, who take pleasure in hurting other people. That’s just the way it is.
Bullying is a fact of life. So in that case, it is alright for someone to beat up anyone with a disability, because hey, it’s human nature?!
BS! Bullying is wrong no matter to whom it is happening to. NT, autistic, someone with a mental illness (I happen to have PTSD as well as Aspergers), it doesn’t matter. Just because bullying is a part of life doesn’t mean it should be!!
And tell me something. Say this bully repeatedly acting like he was sticking up for you. That he had your best interests at heart, you and those like you. Went around telling people how great he was because he supported your cause. And then turned around and continued to bully you and go against everything you, and many who are like you stand for.
That is Autism Speaks.
On another note, blaming the kids autism for him stalking you is redicoulous! So is saying nothing can be done! Have you ever tried, I don’t know, BANNING him from your blog?! Many here on the autism blog ban trolls all the time.
How about reporting him from the company you get the blog from? Interenet harrasment can be dealt with. It is not something you just have to lay down and accept, anymore than we have to lay down and accept anyone who wants to bully us.
Point being NO ONE deserves to be harrassed or bullied for any reason, PERIOD!
“On another note, blaming the kids autism for him stalking you is redicoulous! So is saying nothing can be done!”
I agree!
Whoever told you that you “…can do nothing to this boy, who is making life on the internet a misery for me…”, that it’s OK for him to take “…special delight in harassing me when I blog that I am seriously ill (I have a potentially fatal illness too, by the way), or experiencing a crisis of some sort. But…hey, it’s taboo for me to pick on him, cos’ hey, HE’S autistic…”, and that it is “…OK for autistic kids to bully people like me…” was wrong!
Why are you basing your opinion of autistic people in general based on your experiences with ONE person? Would you condone folks saying that all people with any of your challenges are the same? Would you condone folks saying that because they know such-and-such person who has such-and-such condition, they cannot have sympathy for you?
The boy you mentioned is an asshole. Block him. Report him. Due to his (presumed) status as a minor, I realize you cannot fight back in the traditional sense. However, you can certainly call him out on his ridiculously cruel behavior. The fact that he has autism would not stop me from standing up for myself. It should not stop you, either, and do not let anyone tell you that it should! Screw “taboos”. He’s certainly broken enough.
The majority of autistic kids (and adults) who get bullied do not deserve what they receive. NONE of them other than by default THAT ONE BOY you mentioned are affiliated with this twerp. How on earth can you despise an entire people based on one person? There is a saying: “If you’ve met one person with autism, you’ve met one person with autism.”
I, by the way, am a woman of your generation who has autism, cyclothymia, dyscalculia, psychogenic non-epileptic seizures, and other conditions alongside health problems. Of course there are people out there who I dislike for very valid reasons, but I would never be a xenophobe. I assure you that if I were a modern day teenager who knew you, I would probably be crying myself to sleep worrying about your health, not bullying you for it. When I was a teenager, I often cried myself to sleep worrying about a teacher’s health. I was born sickly myself, yet I would pray to take her place whenever her health worsened! Autistic people can indeed be empathetic, and many have an overly strong sense of empathy that expresses itself unusually.
Bullying is a fact of life and many humans are mean, indeed. Why, though, should we be mean to the innocent in return?
O My !!! I Didn’t Kno !!! I Just Was Lookin’ 4 Some Info On It ‘Cause I Think That My Son Might Have Autism !!! He Has Some Of The Signs !!! Anyways Thankx Again !!!
Where did you get these opinions from?
what are your sources?
Personal experience is our source. Trust me on this!
While I can sympathise with your frustration on the portrayal of Autism and your own experiences as a person with Aspergers, I caution you on your complete disregard for all the good Autism Speaks does as an organisation and for our community. They have brought attention and fundraising dollars to the cause of Autism that far surpasses any other organisation.
I am a mother of twin boys, both diagnosed with severe Autism, one son being non-verbal. The life you may have experienced and our families’ reality are two very different things. I love my sons with all my heart and would never EVER wish that they were not in my life. Having said that, my life is exhausting, painful and sometimes can be hell, both for me and for my sons and the pain they feel on a daily basis.
The portrayal of Autism by Autism Speaks is exactly how our life is like. We have self injurious behaviours, fecal smearing, screaming for hours, destruction of property, injurious behaviours to others, extreme escapism and Obsessive/Compulsive and Oppositional Defiance Disorders to name a few. Our life is not merely some odd tendencies, social difficulties and restrictive behaviours.
Just as you wish that Autism Speaks would expand their definition and portrayal of Autism, I ask you to expand yours of Autism as a whole. Families like ours need for the public to see what our lives are truly like, then to lend support, fundraising and backing in legal, research and treatment matters.
How does it look to others when our own community as a whole cannot come together and pledge to do what we can to make this world more accepting and welcoming of all of us? How can we ask that of them…when we cannot do it amongst ourselves? Just food for thought. Please just consider my words.
Can you tell me what real help they offer other than “awareness” and a someday cure? I don’t think there is a person on the planet now that does not know about autism. Enough with the awareness, let’s get to taking some action!!
What have they spent that money on? Awareness campaigns (once again, this is done to death now, we all know what autism is) that often use scare tatics, derogatory and condescending ways of referring to those on the spectrum, and persuing thier so called cure. They raise billions of dollars!
Where are the programs they could be building? Programs that would help fund evidence based therapy’s for finacially strapped families? Programs that help us learn life skills? Programs that help young adults prepare for transition after school? Programs that help us gain meaningful employment?
All that money, and I see them doing nothing of the kind. All that money and nothing is being done to help those with autism NOW, nor thier families. We need more than lobbiests in Washington. (and don’t get me started with the faults in thier travesty of a failure with the whole Autism Insurance Bill).
We need to be met where we are. We need all of the programs mentioned above to help us lead the best lives we can. We need REAL HELP!! And inspite of all that money raised, we recieve nothing! Nothing! Another “awareness” campaign, another bogus launch of a fundraiser to seek a cure. A cure that would cause those like me to not exist.
I can not support a group who says they advocate and help those with autism, and then turns around and never gives us anything substancial.
*rant over*
As a middle aged autistic woman who was often homeless and is still “too sick” to have medical insurance, I agree with Theo. However, I also agree with your point that we as a community need to present a more united front. ALSO, I think that people (both autistics and non-autistics) need to stop grouping human beings into These Types of People With Autism and Those Types of People With Autism. There is so, so, so much overlap and I fully support the changes in the upcoming DSM.
My nephew was considered severely autistic and is now consider mildly autistic. People grow and change. I myself have a very peculiar mixture of symptoms from all over the spectrum. Until I was a preteen, I flapped and hummed in public, and I will always need to do so in private. I worry greatly about going to a nursing home in forty or so years, because I could not take living a life of no privacy and would likely regress inside of myself and the staff would assume I was just another crazy old person.
Autism speaks also claims there is no relationship between vaccines and autism..
something i know not to be true as my sons autism was caused directly from vaccines..
yes life can be hell.
also there is little support in the community.. people just stare and are like ‘What the Fu*K”
that poor woman..
anyway..
i wish i could have an autism un- awareness month.
what we need is boots on the ground helping us with things like
= laundry
cleaning our house
people do not understand that you cannot leave a severely autistic child alone for even a minute..
they will do something
either hurt themselves, others, destroy something, eat something that should not be eaten,
just imagine the gorilla in the american tourister commercial and you’ll understand what were up against as moms
try dealing with that, cleaning up the HUGE mess, paying to replace things
and then getting shit from everyone because your life is not perfect and your house is a bit out of order to say the least.
i have no friends not one as i spend every waking hour with my son and i have little help and he’s been out of school more than in as there is no good place for him and no one understands all of his issues and how to meet his needs
it has been like for over 9 plus years ago as he became autistic after a round of shots. he is now 11
god bless us.
we are really learning some life lessons the hard way.