Autism Speaks Revamp | Kinmunity: Otherkin Community

Autism Speaks Revamp

Discussion in 'Politics & Current Events' started by FaerieForged, Oct 17, 2016.

  1. FaerieForged

    FaerieForged Great Wyrm
    Dragon

    Joined:
    May 3, 2016
    Messages:
    1,138
    Trophy Points:
    71
    Bones:
    Ƀ5,388.16
    Primary Identity:
    Polykin
    I imagine many of you here are well aware of the organisation known as Autism Speaks. And I'm certain that, like me, many of you cannot stand what they stand for. "Curing" Autism. Using horrible language like "urgent global health crisis."
    A long time friend of my family, who teaches music therapy to autistic children, posted this article on her Facebook today. Obviously there is still a long way to go, but I feel this is a good step.
    Autism Speaks No Longer Seeking Cure
     
    • Like Like x 1
  2. St Claire

    St Claire Void Walker

    Joined:
    Jul 29, 2015
    Messages:
    326
    Trophy Points:
    42
    Bones:
    Ƀ719.01
    CrowBarghest
    Primary Identity:
    Spirit
    Mood:
    :confounded2:
    As far as I'm concerned the damage has been done. I wouldn't even care if autism speaks did a complete 180 and started actually supporting autistic people and giving them resources, I will never in my life trust them. I will never be able to think of them as anything other than for-profit, eugenics-supporting trash.

    Plus, theres the damage they've done to the public image of autistic people, making people believe the lie that it can be cured, creating the belief that autistic people are a burden to their families (while downplaying the struggles that autistic people face, and the fact that they are much more likely to be abused by family members than non-autistic people), etc.

    In my opinion the only way they could redeem themselves would be to replace all of their board members with actual autistic people, change their business practices to a not-for-profit model, change their policies, and change their name. In other words, become a completely different organisation.
     
    • Like Like x 4
  3. Konayaki

    Konayaki Wyrmling

    Joined:
    Jul 3, 2016
    Messages:
    107
    Trophy Points:
    26
    Bones:
    Ƀ223.92
    Brown WingsOtherkin HeptagramExotic GriffinCoyote
    Primary Identity:
    Polykin
    Unfortuanately, I don't think I forgive them. They make me extremely uncomfortable and have promoted a terrible stigma to people with Autism such as myself.
     
    • Like Like x 3
  4. Shiro

    Shiro The foxy wolfeh ;p
    Staff Member Administrator

    Joined:
    Dec 15, 2014
    Messages:
    1,273
    Trophy Points:
    100
    Bones:
    Ƀ38,278.66
    Standard Media KeyWuffyChibi WolfGold Theta DeltaSilver Werewolf CoinGold Wolf CoinBrimstone DemonRed KitsuneBarghestWonder WolfChibi FoxGold PawBronze Fox Coin
    Primary Identity:
    Therian/Were
    Mood:
    :relaxed:
    As somebody with High Functioning Autism who has actively campaigned against Autism Speaks for quite some time, this is a welcome change in direction within their organization. An organization can only be judged by the individuals who operate it, and if the board of directors and new president begin to support those with disabilities and run the charity how it should be run, and do so for a considerable amount of time to prove good faith - I would be willing to support them as an organization.

    However, right now, I still do not and cannot trust them until they demonstrate and continue to demonstrate that they are willing to take the proper steps to work with the autistic community, rather than against it.
     
    • Like Like x 4
  5. Spencer

    Spencer Spawn

    Joined:
    May 9, 2016
    Messages:
    42
    Trophy Points:
    0
    Bones:
    Ƀ102.06
    Theta Delta
    Primary Identity:
    Therian/Were
    Mood:
    o_O
    I would not forgive them, even as stated above, if they did a 180 I would never trust them.
     
  6. kiror

    kiror Fuzzy Mirror
    Staff Member Deputy Admin Elder VIP

    Joined:
    Jun 5, 2015
    Messages:
    505
    Trophy Points:
    69
    Bones:
    Ƀ125.96
    Primary Identity:
    Polymorph
    Mood:
    :sleeping:
    I've read one article they wrote about toe walking some time ago and got pretty shocked about their suggested interventions: from stretching to surgeries, talking was not listed there. In that article, they didn't mention the cure for autism or any higher ambition, but they expressed that it is a negative thing.

    That article I've read isn't completely incoherent with the new goals, so they won't have to change so much in order to comply to their new mission statement. I'll have to wait until I see their actions to decide what to think about them from now; while then, the old perception I had of them persists: hate group.
     
    • Like Like x 1
  7. Kakoroff

    Kakoroff C-c-carrotcake
    VIP

    Joined:
    May 8, 2015
    Messages:
    83
    Trophy Points:
    21
    Bones:
    Ƀ100.22
    Gold VIP - One Month SubscriptionGolden Blaze PhilterVoice Key
    Primary Identity:
    Draconic
    Mood:
    :noexpression:
    @kiror

    Goddamn, that article is inaccurate as all hell. I know two people who needed surgery to fix that specific toe walking issue, but neither of them have autism, not even in the least. Toe walking is a result of growth spurt, where the calf muscle didn't grow with the bone. Sometimes stretching and certain muscle therapies can help stretch the muscle, if caught earlier, otherwise surgery is required to fix it. Ones foot isn't meant to tip toe walk, and can cause problems later on in life. My younger sister, and a friend in high school had this issue. My friend in high school got the surgery so he could walk normally. I don't see the big deal here. It helped him. I'm just oddly surprised it got somehow associated with autism.

    In addition, I somehow find it odd how people get so offended when someone mentions a possible cure to autism. Autism is a disorder, it hinders ones ability to live their life normally, while there are different severities, the more severe ones can't really fit in to society, and would be the ones to benefit the most from such a cure or treatment. I can't see anything other than selfish reasons why one would think it such an awful idea. Not to say the organization mentioning it should be the ones to find such a cure, but curing autism, or at least finding a way to prevent its onset would be a great step forward in psychological health. I've heard people call it ableist to want to cure mental illnesses. Ridiculous.
     
  8. Kerguelen

    Kerguelen Hatchling

    Joined:
    Sep 28, 2016
    Messages:
    62
    Trophy Points:
    10
    Bones:
    Ƀ281.78
    Primary Identity:
    Polykin
    Mood:
    :hushedface:
    Now, as for the cure subject...I have mixed feelings. On the one hand I agree that it can give off a bad image (and with other things said above), but personally, I'd love to lessen my sensory sensitivity (which is hell) and be more able to understand when someone isn't being literal, or be better at eye contact and body language...life would be so much easier. I'm not normally one to say "the answer lies in the middle" but I'd say it's in the middle here. A mix of advocating for more acceptance and support (after all a lot of the problem comes from a lack of such things) and medical help for those that might want it. Autism is a spectrum disorder after all, with varying symptoms and intensities.
     
  9. Lee RuralWolf

    Lee RuralWolf A.K.A Lee Lobo (Mexican Wolf)
    K9 Unit

    Joined:
    May 16, 2016
    Messages:
    314
    Trophy Points:
    34
    Bones:
    Ƀ1,099.63
    Theta Delta
    Primary Identity:
    Therian/Were
    Perhaps I am one of the few that wish there WAS a cure for Autism. I HATE my Asperger's. But then again, I feel the same about my Therianthropy. I think these mental states, and conditions make me less than I should be, in a different class of people.

    I had family and friends used to tell me if I didn't have High Functioning Autism / Asperger's that I wouldn't be me anymore, naturally same for therianthropy. However for me that would be fine. For this topic, I would not have to worry about seizures, panic attacks that come with my disability. Then perhaps therianthropy would been an easier pill to swallow, even before awakening.

    I guess I have this bias because growing up my family isolated its self totally from me because of Asperger's. Even my own mother called me an "Asperger Freak". Then later it was slurs toward my therianthropy. But that's another story.

    I would love to be a regular Joe. But i am not, nor will I ever be. I was born with my Asperger's / High Functioning Autism, and my Therianthropy. I will die that way.

    Bleak I know. But it's how I feel.

    What I despise. How about those born with LOW FUNCTIONING Autism? Those that cannot speak, walk, function in life. For us with high functioning autism / Asperger's we can at least live like most other people. These cannot. No cure, means those born that way will never see a fully functional life. That's sad!

    Lee
     
  10. FaerieForged

    FaerieForged Great Wyrm
    Dragon

    Joined:
    May 3, 2016
    Messages:
    1,138
    Trophy Points:
    71
    Bones:
    Ƀ5,388.16
    Primary Identity:
    Polykin
    The fact that you know two personal cases of the physical reason for toe walking does not in any way discount the autistic side of things. I am friends in real life with six people on varying degrees of the Autism spectrum who all walk on their toes. All of them have seen doctors about it and their muscles have grown just fine. They simply walk on their toes as a quirk of their disorder. Just because there are cases of the muscles not growing properly cannot discount every case of toe walking.

    Thousand of Autistic people have been crying out for years that they do not want a "cure". Yes it is classified as a mental disorder; but when your average person says Autism needs a cure, they are (even subconsciously) comparing it to a disease and the Autistic community despises the idea of being compared to a disease. There are no biological markers for Autism, no way to control when and where it occurs. And therefore no "cure". Yes, there needs to be some way to help those who have more severe forms of Autism that makes it impossible or almost impossible to live a better quality of life. But you can't just go around saying that "Autism needs to be cured", and that anyone who does not want a cure is only saying that out of selfish reasons, that's insensitive and rude. There are plenty of people saying we should find a cure who do so out of equally selfish reason.
    There are certainly those who wish to find a "cure" because their disorder inhibits them in very difficult ways. And they needed to be supported in their desire to find a way to make them "normal" (I use that word as loosely as possible). Research should go into helping them in any way possible.
    But don't use it as a blanket statement for everyone on the Autism Spectrum.
     
    • Like Like x 1
  11. Oxalaia

    Oxalaia Spinolion
    Staff Member Guardian Dinosaur

    Joined:
    Dec 30, 2014
    Messages:
    607
    Trophy Points:
    56
    Bones:
    Ƀ1,081.05
    Background Key
    Primary Identity:
    Alien
    At least it is an good step. Anyway the matter on the whole cure for Autism is what is asked me an lot. I usually can give this answer to them who ask:

    Yes autism causes many problems in my life. From social awkwardness to being misunderstood. I wont lie by saying I wish I could cure it. Most of my life I wished for that until I decided to sit down and really think about it and ask: ''Do I really want this to be cured?'' At first my answer would be yes at the time I was still wishing secretly for it. But now I am growing older I realize what autism means for me. Yes it is not an easy life but it also makes me to who I am today and how people know me. If my life was different I would never get to know my current friends. My autism allow me to see who are my real friends. It is hard to live with it but it makes me stronger when I overcome the small hurdles on my path. It is an huge part of what makes me human, what it makes me. Do I want it to be cured and go away? No, I dont wish for that anymore. It would feel as an huge part of me would also be removed. I know others may think otherwise and want an cure and that is fine but I dont want that anymore. Even if there was an method right now that would solve it I dont want it. I want to grow old with this. I rather have my life being an bit more difficult due my autism but having the part what makes me the person of who I am today then live an easy life without them feeling I lost an part of myself. I dont care what others may think. Let them call me crazy or weird, I dont care. I am living my life as an complete me and I am happy with that. I would never give up that happiness my autsim let me see for any kind of thing. Yes I know it sounds weird but my autism makes me happy. To be reminded to what makes me. I have found more happiness in that then I knew. It is thanks to my autsim I am reminded why I am happy. I cant imagine my life without it. I would never call people out on trying to ''cure'' it. If others are happier without it fine but I made my choice. But I still function in everyday life as everyone else. That is what I mostly care about. Yes, it requiers me to find ways to deal with things differently but that is just an small price I pay for the part that makes me feel complete. As long I am reminded what makes me and what makes me happy is what counts for me. I would never want to give up what my autism despite the negative things let me see. Only then I feel who I am.
     
  12. Kakoroff

    Kakoroff C-c-carrotcake
    VIP

    Joined:
    May 8, 2015
    Messages:
    83
    Trophy Points:
    21
    Bones:
    Ƀ100.22
    Gold VIP - One Month SubscriptionGolden Blaze PhilterVoice Key
    Primary Identity:
    Draconic
    Mood:
    :noexpression:
    I'm sorry, but there are thousands more who can't even communicate that much who could certainly benefit from such a "cure" or "treatment" that would prevent or otherwise solve autism. Again, I can find no reasons other than selfish ones to completely prevent research into some method of prevention or eradication of symptoms. Autism provides no benefits. Again, no benefits. You may hear of cases where those with autism has superior qualities to other people in some way or form, but that is extremely rare, and not the norm. Having known people who work with autistic children, and having volunteered a few times myself back in my highschool years, autism is not a pretty unique thing. Severe cases are heartbreaking to see. It doesn't matter that the ones with weaker symptoms don't want a cure, it matter that those with the severe cases that need some relief to the condition, otherwise they are suffering. Of course current treatments are all we have, but I don't see the harm in preventing more effective treatments that can further weaken or completely eliminate the symptoms. Think of the bigger picture.

    However, as Oxalaia mentioned, when you have something become part of you for such a long time, you can't imagine going without it, and one would have a bit of an existential...pondering.(i wouldn't call it a crisis, maybe) For which being apprehensive about a treatment would be natural and rational. But, if my knowledge is anything to rely upon, a treatment or cure would likely only be able to catch it early, early on. Any later and its possible the brain development made in regards to the disorder would be irreversible or untreatable, aside from therapy. Any such treatment would benefit those with early onset symptoms or if it could be caught before the onset of symptoms. I'm reaching into hypothetical here, but it serves the point: Preventing such a route of treatment helps no-one. However, encouraging it will hurt no-one.
     
    • Like Like x 1
  13. FaerieForged

    FaerieForged Great Wyrm
    Dragon

    Joined:
    May 3, 2016
    Messages:
    1,138
    Trophy Points:
    71
    Bones:
    Ƀ5,388.16
    Primary Identity:
    Polykin
    If you notice, I agree that those with more severe symptoms and those who are actively searching for a cure, should be given the support and resources they need to find one. Research should go into finding a way to help the ones who want the "cure". But you also need to listen to the voices who do not want one and not use a blanket statement like "autism needs to be cured" as though it's a horrible, disgusting disease.
    You cannot say the ones who do not want a cure are only saying such out of selfish desires, because you have no idea what does on in the mind of every person who does not want to be forced into a cure. One of the longest friends of our family teaches music therapy to autistic children, most of them have confided in her that they are happy to be autistic (a few have mentioned wanting to be more "normal"). I used to babysit a family's three autistic children (and one neurotypical child) for years. The youngest was two years old and had some strong sensory issues (mostly to do with touch) but at two years old she was reading, writing, and even doing early maths. She was quick as a whip and if you didn't know any better you'd think she was a tiny five or six year old. The eldest, a boy, had a more severe form and often has to be hospitalised for weeks to get him back into a calm state of mind, he just got into his teens and as long as he is in equilibrium he has the same mental capacity of a sixth or seventh grader, and he's constantly getting smarter. The middle girl had a much less severe form and no one would guess she fell on the spectrum.
    A family at my church that we have known for 20+ years has four autistic children. One is married with children, one is engaged, one falls in the middle most days but often becomes violent and aggressive and must be put in a facility that understands how to deal with him and get him back to equilibrium. The third youngest is nonverbal, wanders from home almost weekly, and has the mental capacity of a four year old.
    Out of all of them, only one has actually indicated they wished they could be "fixed". But the most heartbreaking thing isn't the desire for a cure, but the fact that they are so ashamed of their disorder because of how the media and the world treats them, that they think they're broken and abnormal and wrong.
    I see the bigger picture. I want a "cure" for the ones who want it. But I also want society to change how they view autism for the ones who don't.
     
    • Like Like x 2
  14. Kakoroff

    Kakoroff C-c-carrotcake
    VIP

    Joined:
    May 8, 2015
    Messages:
    83
    Trophy Points:
    21
    Bones:
    Ƀ100.22
    Gold VIP - One Month SubscriptionGolden Blaze PhilterVoice Key
    Primary Identity:
    Draconic
    Mood:
    :noexpression:
    Autism does little to impact intelligence. It merely effects the social capabilities and understanding. Autistic fold generally don't benefit from increased intelligence, in fact in about two thirds of ASD cases, there is an intellectual disability present as well. Those with high functioning autism may find some benefit to being able to focus on complex and intricate tasks, but that is neither a curse or a blessing. "normal" people can learn to do the same rather well. In addition, those with autism have problems with empathy, looking at things from others point of view, seeing the "bigger picture". While an ASD kid might pick up on math slightly better, it's not going to help him figure out how to plan ahead for planning meals or dealing with anxiety when they have to go out in public. Having the book smarts doesn't mean you can function in the real world. In addition, most increases in intellectual development, can perhaps be attributed to less time spent socializing and less consideration socializing.

    "Research should go into finding a way to help the ones who want the "cure"" = "Autism needs a cure"
    I don't see the difference between the two statements. They are much the same to me.

    Your emotional interpretation of the statement is irrelevant. It's a disorder. It requires treatment and therapy. Having something to prevent it or cure it would be all the better for people. This is a pursuit of health and well being. If that offends you, not my problem. Be offended. It does not change the fact a "cure" would be beneficial. Again, look at the bigger picture, outside of yourself.
     
  15. FaerieForged

    FaerieForged Great Wyrm
    Dragon

    Joined:
    May 3, 2016
    Messages:
    1,138
    Trophy Points:
    71
    Bones:
    Ƀ5,388.16
    Primary Identity:
    Polykin
    I did not correlate autism to their intelligence, their intelligence was simply part of their descriptors. I can see that if read a certain way it may seem that way, so I apologise that it was a little more vague than I had intended.
    Except it does not need a cure. Some want it. But wanting something is different than needing something. I want to eat this entire bag of snickers. But I need to eat a balanced diet to remain healthy and active.
    Firstly I am not offended, I have not been slighted nor insulted. Therefore I have nothing to be offended over. Secondly, what makes you think I am looking at myself? I am looking to the people who actually have the disorder and what they want. But, as I stated above, it's not a requirement that it be treated. Because there are those who are able to function in society with it. But there are those who cannot function well and many (I would go so far as to assume the majority) of those who have a much more difficult time and cannot function properly want the cure. But it is still not a requirement or a need. But acceptance towards those with the disorder and understanding how it works and what it is, that should be a need.
     
    • Like Like x 1
  16. Kakoroff

    Kakoroff C-c-carrotcake
    VIP

    Joined:
    May 8, 2015
    Messages:
    83
    Trophy Points:
    21
    Bones:
    Ƀ100.22
    Gold VIP - One Month SubscriptionGolden Blaze PhilterVoice Key
    Primary Identity:
    Draconic
    Mood:
    :noexpression:
    Now you are simply arguing semantics. Whether you feel it's needed or not is irrelevant. It's needed if you have any desire to improve the quality of life an autistic child could have, especially with those who have such severe symptoms they cannot even function as an adult in society without help and not without suffering. So in that context, yes, it's needed.

    Your tone implied otherwise.
    This suggested you did take offense.
     
  17. FaerieForged

    FaerieForged Great Wyrm
    Dragon

    Joined:
    May 3, 2016
    Messages:
    1,138
    Trophy Points:
    71
    Bones:
    Ƀ5,388.16
    Primary Identity:
    Polykin
    Tone is not a format that can be conveyed over a text based medium. Any tone you read is brought to the reading only by yourself.