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Confused about Autism Speaks as a hate group

Discussion in 'General Autism Discussion' started by Ephraim Becker, Feb 24, 2021.

  1. Ephraim Becker

    Ephraim Becker Well-Known Member V.I.P Member

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    What Is Asperger Syndrome? | Autism Speaks
    I came across a link to autism speaks for aspergers and it lists the strengths on the Autism Speaks website and doesn't even mention ABA therapy. For generic autism there's a quote saying "
    If you've met one person with autism, you've met one person with autism.
    "

    Where on the Autism Speaks website does it list hate towards us?
     
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  2. Magna

    Magna Well-Known Member V.I.P Member

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    I looked at their site after seeing your post. I've also heard on another autism forum that Autism Speaks used to be blatant about thinking autism was a scourge and research efforts should be focused on a cure. That kind of position is offensive to the vast majority of autistic people for obvious reasons.

    I didn't see anything blatant along those lines on their website now. I personally am still suspect due to the strong position they held as to whether they still hold that position.

    It would make me more comfortable if they not only stated their present position if it's pro-autism, but also if they publicly stated that they had it wrong in the past and deeply regret that.
     
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  3. Ephraim Becker

    Ephraim Becker Well-Known Member V.I.P Member

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    So Autism Speaks is no longer a hate group and took down all the horrible stuff?
     
  4. Au Naturel

    Au Naturel Au Naturel

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    I would not call them a hate group. Nobody wished autistic children ill. They started as more of an ignorance group. Of course, ignorance can also cause harm but ignorance is curable while hate is not so easily dealt with.

    "Autism Speaks" was originally not intended for the high functioning/ASD-1/Asperger types but rather for the parents of those more profoundly affected. These people are desperate and alone and seeking advice and assistance from anyone who would listen. Desperate people thrashing about and seizing on any suggestion, no matter how obviously false. Like the whole thimerasol thing, among others.

    They have since expanded their topicality to include ASD-1 children and people diagnosed as adults. I believe they have abandoned their more noxious recommendations.

    At one time it was thought that there could be a cure. Now we know it is a mostly genetic condition with secondary influences from the environment. There's some mitigation that can take place thru intervention but no "cure" is possible unless you can regrow the brain with a different set of genes. Faced with that reality, it makes no sense to push for a "cure."
     
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  5. MyLifeAsAnAspie

    MyLifeAsAnAspie Well-Known Member

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    I understand their "100 day kits" still promote ABA. I didn't confirm that since you have to jump through hoops to download them. I can't say I know enough about ABA to take a strong stand against it though. Here they are at their worst, but they have come along way since this terrible video:

     
    Last edited: Feb 24, 2021
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  6. Mia

    Mia Well-Known Member V.I.P Member

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    There's also the idea that they have absolutely no people with autism on their board, and within their ranks up until quite recently. So you have all these people who are not autistic attempting to aid autistic families with no input from individuals or groups with autism. They still refer to autism as a disease. They are less open about what they actually advise. But I believe they recommend 'early intervention' before children are two years old.

    At one time they hired John Elder Robinson, a well known writer who is autistic. Who quit because they would not listen to his advice in helping people with autism. This is what he said at the time:

    "Autism Speaks founder was a media executive; their name a marketer’s creation. Many of the staff described themselves as non-profit professionals, and none of the senior people were autistic. They were very effective at fundraising, and painting a picture of autism that elicited widespread sympathy.

    Autism-as-tragedy helped them raise hundreds of millions of dollars. Groups like Charity Watch reported that they spent lavishly on themselves and their organization compared to other medical nonprofits. Their annual reports told a sad story. Monies raised locally paid headquarter’s salaries and supported distant researchers. Very little returned to the communities who raised the funds. Perhaps it’s all about the money, I thought, and my ideas of acceptance and fitting in are not a basis for tens of millions in donations the way “stolen children” and “ruined families” are.

    I had imagined I was making a difference on their science board, but the Wrights called the shots when it came to investing the organization’s money, and the research I had advocated for took a back seat to the Wright’s agenda, which appeared to be biology and cure. Had I been able, I would have made different choices.

    Autism Speaks would probably disagree with me, but I felt then and feel today that their focus on causes and cures did very little to help the millions living with the reality of autism. From the beginning of my autism advocacy, I have kept that goal in sharp focus and I’m quickly frustrated when others can’t do the same."

    ...I joined the Autism Speaks science board in the hope I could help move their science in a direction that would be more beneficial to autistic people. At the time I thought their legacy would be good autism science. I left the Autism Speaks science board because of their hurtful depictions of autism and autistic people. Autism Speaks did not make a huge mark in science, and with drops in funding their significance in that world has diminished. It’s toxic rhetoric that has become the organization’s legacy.

    Meanwhile we autistic people are still here. We’re not missing, and we’re not lost. Monsters will not take us, because we are strong. When it comes to policy, parents and clinicians certainly have a say, and deserve a seat at the table, but the table rightly belongs to us. We are autistic people."

    My Time with Autism Speaks
     
    Last edited: Feb 25, 2021
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  7. Au Naturel

    Au Naturel Au Naturel

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    I understand that ABA has also changed a great deal since the bad old days. I don't know enough detail to comment more though.

    That video reminds me of stuff I saw on Jerry Lewis Telethon against Muscular Dystrophy. I once saw Jack Palance do a monolog as Muscular Dystrophy personified, talking about how much he loves to watch little children wither and die. Designed to incite hysteria among parents and get them to join/contribute.

    Remember that Autism Speaks is aimed primarily at parents, not children. They may exist mostly to make money for their board.


    The do's and dont's after an autism diagnosis | Autism Speaks
     
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  8. GrownupGirl

    GrownupGirl Tempermental Artist

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    I will never trust Autism $peaks or ABA, no matter what they say or do.
     
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  9. AGXStarseed

    AGXStarseed Well-Known Member

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    ASAN (Autistic Self-Advocacy Network) - an organization run by Autistic people for Autistic people - has a page detailing why Autism Speaks does not hold Autistic people's interests at heart: https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer2020.pdf

    Furthermore, AWN (the Autistic Women & Non-Binary Network) goes into more details as to why Autism Speaks matches both the FBI and SPCL's definitions of a hate group. The following article is written by Amy Sequenzia:
    Is Autism Speaks a Hate Group? - Autistic Women & Nonbinary Network (AWN)
     
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  10. Magna

    Magna Well-Known Member V.I.P Member

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    Thank you for linking these. Although I find ASAN's hyper-partisan political stances unsettling, I think the pamphlet you linked is good as is the link from AWN.
     
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  11. Bibliophile715

    Bibliophile715 Armin - system member - any pronouns

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    My parents and my older brother (who I'm not friends with even though he is also diagnosed-which I may have misspelled earlier due to a migraine) have actually gone to autism speaks conferences. As there was a group of talks they held in a conference building (which lets all sorts of organizations hold events in it) near where I lived once. That day will always be extremely vivid in my memory because I remember being home alone that day while the rest of my family went out without me to a conference whose attitude about some autistic things that I saw online chilled my very bones no matter how much I told them not to go. I remember looking up on their website and not wanting to go because during that time there was no one autistic who was on their board among other things. I don't trust an organization like that. And yes, as the above users have said, there was more problematic content on the autism speaks websites before it got taken down because I remember looking at it and being horrified.

    I will never associate myself with autism speaks. Now, I don't hate autism speaks, I just don't want to participate in any of their things. I thankfully narrowly got out of going to a conference with much strained influencing to my parents as I was nearly forced to go to one. I remember back when my parents originally found out about autism speaks and they were so happy seeming that there was an organization trying to "cure autism" as they still sometimes revert to wanting me to be more normal even as much as they understand I'm not normal my parents are a bit narcissistic.
     
    Last edited: Feb 25, 2021
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  12. Ephraim Becker

    Ephraim Becker Well-Known Member V.I.P Member

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    Why aren’t you friends with your older brother?
     
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  13. Au Naturel

    Au Naturel Au Naturel

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    The definition of hate has been expanded to the point it is meaningless.

    Hate means you want to hurt somebody just for the sake of watching them hurt. Autism Speaks may not have the correct answer for handling autism but that does not mean they hate autistic people. There is an important difference.
     
  14. Bibliophile715

    Bibliophile715 Armin - system member - any pronouns

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    I was friends with him when we were younger until he specifically asked not to be friends with me a few years ago. According to him we didn't have enough common interests anymore including having too much of a different political view from him even though I'm not really political. Also there were other reasons but essentially he just rarely wants to talk to me anymore and isn't fond of one of my online friends.
     
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  15. AGXStarseed

    AGXStarseed Well-Known Member

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    I think arguably my own biggest bone of contention with Autism Speaks is their alliance with the Judge Rotenberg Centre: Autistic Hoya — A blog by Lydia X. Z. Brown: An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

    Word of warning, the following video has scenes that some may find disturbing:
     
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  16. Ephraim Becker

    Ephraim Becker Well-Known Member V.I.P Member

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    You should do anything to be friends again with your older brother. I always wanted a sibling that has autism. Maybe make some compromises with him. It’s always good to have someone similar to you that’s a sibling and gets along. Different political views is a ridiculous reason to not be friends and one common interest is enough. My sibling stare at me when I have a tantrum which I hate but your situation is nothing like that.
     
  17. Bibliophile715

    Bibliophile715 Armin - system member - any pronouns

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    Uh...my brother really, really doesn't like me. He's made fun of me to his online friends before which my mom has told me about. He ridicules several of my online friends. He's caused me to have anxiety & panic attacks, laughed and made fun of me when I explained I had horrible nightmares, and teased me when I told him how I fell and broke my ankle. He's not a nice person. So no, I'm not going to make even more compromises to him than I already have.

    He expressly stated when he said he didn't want me to be friends with him that we couldn't get along. Just because he's autistic doesn't mean we have common interests. We don't have any common interests. He doesn't like the same tv shows I do, has made fun of me for reading books, and the one tv he likes has caused me anxiety attacks so I find it difficult to watch it and I go into an auto pilot mode whenever it's on in order to prevent more anxiety. I don't want to sound mean but he is very narcissistic and sometimes I get anxiety from even being near him. I'm too afraid of him to be friends with him.

    Also I don't think you quite understand the different political views. He's a very radical republican meaning he's not fond of most lgbt+ categories and I am lgbt+. So it's not a ridiculous reason. He just doesn't understand people should love anyone that they want to. He is not accepting of me being a non-binary and liking all genders. If he can't accept me for what I identify as, I'm not going to be friends with him. I haven't even been able to have one conversation with him since I came out as non-binary...
     
    Last edited: Feb 26, 2021
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  18. Baphocletian

    Baphocletian Arch-Degenerate V.I.P Member

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    Not to get all technical here, but I can't in good conscience call Auti$m Speaks a hate group. They should more accurately be seen as a 21st-century eugenics society.

    They "speak" only for smothering, abusive, patronizing Autism Mom™ Karens and Josef Mengele-wannabe shrinks. Their multi-million propaganda campaigns scare-monger our existence and defame us as burdens on our long-suffering families and caregivers who "only want what's best" for us. But God forbid we step outta line and actually speak up about our idea of what's best of us might look like. [sarcasm]Donate to their "charity" today, and together we can hopefully one day find a cure for this defective, uncivilized genome once and for all![/sarcasm]

    Psychologists of future centuries will look back on this era's "scientific consensus" on autistic people similar to how we view the fictional mental illness of drapetomania in Antebellum slaves nowadays. And they will hopefully regard the "treatment" endorsed by Auti$m Speaks as barbaric and dehumanizing as the treatment Samuel Cartwright suggested masters administer for drapetomania.
     
    Last edited: Feb 26, 2021
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  19. Ephraim Becker

    Ephraim Becker Well-Known Member V.I.P Member

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    Have a sit down with him and explain how you feel. Explain to him why beings made fun of being non-binary means so much to you.

    Online friends mean nothing. They’re just random strangers on the internet and doesn’t doesn’t know every single perspective. Online friends aren’t real friends. Maybe don’t talk about your differences but talk instead of your similarities with him. How it’s similar to his situation that you’re going into panic mode. Talking about things you have in common would get him more interested in you.

    I come from an ultra-orthodox Jewish neighborhood and background and everyone in my neighborhood is very anti-lgbtq and grew up knowing that it’s against the Torah to be lgbtq. Online friends mean nothing to me and I only have one friend who’s similar to me and he’s not religious and he supports lgbtq. I like him so much that I’m even considering myself identifying myself as lgbtq which my community is angry at me about.

    Get him interested in the tv show you like but first so that you care about his tv shows. You’re going to be depressed your whole life if you only have online friends.
     
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  20. Ephraim Becker

    Ephraim Becker Well-Known Member V.I.P Member

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    “Don't like those who are pagan, wiccan, or not religious”
    I found this on your profile. Why should someone respect your lgbtq if you can’t respect people who are atheist or not religious?
     
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