Phidaissi

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  1. Phidaissi added a post in a topic: Different Charity please   

    [quote name='Aiwa' timestamp='1344896284' post='2296603']
    Phidaissi... I think this sums up everything...

    Good intentions sometimes do not have good results.

    If no one tries to tell those with good intentions, then those results don't change.

    I can't force anyone to change who they donate to, but I can try to educate them as to why their good intentions might not be having the good results they believe them to have.

    The fact that people say they are 'sorry to hear' someone is autistic really says a lot about perceptions of autism, and that's really bad for autistics.

    People with disabilities do not want pity. They want acceptance.
  2. Phidaissi added a post in a topic: Different Charity please   

    I understand that they may have done things to help you as a carer, that is the angle they tend to approach, so they are very appealing to parents and carers of people with autism, particularly those with relatively severe comorbid conditions .

    I realise many such people believe supporting Autism Speaks is positive because of the few good things they have done.

    But they do these things at great expense to most autistic individuals.
    Please consider the ramifications of how they conduct themselves to achieve these things, and not just whether the few things they have done have benefited you as a carer.

    Though they do have some good literature, they were also responsible for the spread of known disproven literature (and specifically, the Wakefield stuff) for years. And continued massive investment in related research as well which even lead to a senior executive resigning. Details on wikipedia .

    Clearly no one can stop people from donating to such an organisation.
    I just want to raise the point that their objectives and methods cause significant harm to autistic adults, and that your child will one day be an adult, and they may not be all that different from me, or the many other autistic adults out there.

    I would suggest that the negatives they cause as a result of their methods, are not something you'd enjoy seeing them unhappy at in 20 years time.
    And if I had any better way to fully explain just how negative some of these effects are that parents and carers frequently are not aware of, I would love to be able to do so.

    Not saying they never do any good, they certainly have done many things to help carers.
    The issue is they've done it at the expense of the autistic individuals, and now because of the massive size and public visibility of autism speaks, autistics have no voice , because Autism Speaks drowns them out so completely.

    Did you read the links I provided in an earlier post? Do they not convey why autistic adults would feel this way?
    Is there anything else I can do to help illustrate this issue to you?

    Autism Speaks aims to help carers care, but fails to help autistics gain any independence themselves.
    And like most other people, we want to be able to live our lives independently and speak about our needs.
    This is why I ask so strongly that the visibility granted from businesses supporting autistic causes please be directed to self-advocacy organisations .

    Because no one understands autistics as well as other autistics.
  3. Phidaissi added a post in a topic: Different Charity please   

    [quote name='Wolfie' timestamp='1344845965' post='2296359']
    Remember this.. You cannot get acceptance without awareness, but you can get awareness without acceptance. Basically, awareness is important because it makes acceptance possible. Not saying to settle for awareness, just don't shrug off it's value.

    While I would generally agree, in this specific instance, due to the methods used by Autism Speaks, much of the awareness has been very negative.
    Fortunately there are some other forces out there providing awareness too, but that ad I linked in an earlier post is pretty indicative of the nature of 'awareness' Autism Speaks tend to aim for. Unfortunately I can't see that particular kind being helpful at all.

    It also unfortunately leads to a double bind situation for many of us on the spectrum, who because of the extreme and unpleasant depictions often get dismissed by others as not being autistic enough because we CAN speak for ourselves. So either we can't speak and must defer to others, or we are dismissed as being too functional and thus not really autistic. This is one of the arguments often used to explain why an organisation like Autism Speaks have no autistics on the board.

    As you did mention from the show Parenthood, I don't think that was negative, and that sort of thing is okay with me. ;)
    There are some good and neutral depictions out there, and I would love to see those supported more.
    This is one of my biggest reasons for so strongly voicing my objection to Autism Speaks. Because of their size and visibility, they soak up the vast majority of well intentioned donations to help autistics.
    Then they produce all the negative depictions that harm us. :(

    Sorry for the ranting, but seeing donations of good intentions actually work against those intentions really upsets me.
  4. Phidaissi added a post in a topic: Different Charity please   

    [quote name='Wolfie' timestamp='1344834254' post='2296340']Then it'd be better to say something like, "There are many other sites than what I've linked to." would convey the message that they can be found if someone wants to look, without giving the impression that they need to look. It's like saying, "I've provided a few links, but there's plenty more out there." As I said before, I saw that you provided links, so I wasn't saying you didn't provide any. Just that the wording can be discouraging.
    That's quite understandable, and I'm certainly willing to take criticism on how I've presented things.
    After all, the intended audience for this sort of thing are NT's (neurotypicals: people who are not autistic) so having things said in a way that helps NT's understand what I'm trying to say is quite important. If I was trying to communicate only with other autistics I'd likely be preaching to the choir! ;)

    If there's anything else I can help clarify I am happy to do so, it just feels frustrating at times when people don't understand my intent because my method of communication is different to theirs. That's not the fault of either party, but it's something that needs to be addressed if messages like this one about autistics are to be understood properly by the non-autistics of the world.

    [quote name='Wolfie' timestamp='1344834254' post='2296340']Providing links helps the readers who want proof or to read further. They don't have to hunt down the information, as it's easy access and is more likely to get readers and thus support.
    That's a good point, and when I first made the post I was mostly trying to raise the point not prove it.
    I hope I've helped to provide enough now though.

    [quote name='Wolfie' timestamp='1344834254' post='2296340']Even before your first post in this topic and even before IPS was accepting donations to put towards autism (I think it was Autism Speaks, may have been another organization), I was already aware of it. I'm aware of at least two people who fall within the spectrum and was rather glad that the show Parenthood included an autistic character. That show, regardless of it's portrayal, is helping to bring awareness of autism. So I hope you haven't taken anything I said to be against you, as my goal was to get you to present a better case for your concerns.

    There are some portrayals that do help to raise awareness of autism and in many ways that's helpful.

    Unfortunately, a lot of the awareness doesn't lead to acceptance, and this is why many autistic self-advocacy groups call for autistic acceptance, and not awareness. This is another issue many raise with the model of 'awareness' promoted by Autism Speaks, but I suspect that point would be far too long and complicated for either of us, and as a more 'political' issue is less important than the serious concerns already raised.

    There is unfortunately a big difference between being aware that autistics exist, and accepting that they are just people that work a bit differently.
    I'd love to see more positive (or even neutral) representations of autism, as they are unfortunately still quite rare. :(
  5. Phidaissi added a post in a topic: Different Charity please   

    [quote name='TaffyCaffy' timestamp='1344804761' post='2296261']
    No, I didn't miss your point. You, however, entirely missed mine. It wasn't until your most recent post that you partially discarded general hyperbole in favor of qualifying your own, personal experiences. I am more than happy to acknowledge that there are some people who hold ridiculous views on autism. What I was pointing out to you is that when you paint everyone with the same brush, even in an emotionally honest statement, you alienate those within your readership who take offense at being treated so. This should sound familiar enough to you from another angle, shouldn't it?

    Wolfie beat the rest to death with a stick, so I'm going to leave it at that.

    Like I have tried to say already, I am making no comments about individuals, a vast number of good people exist in the world and even more are good people that are merely misinformed.
    By saying something like, "negative and dehumanising view of autism that most of the general public possess" I am not at all saying you or anyone else specifically hold such views, but that such views are common enough that they are apparent in the general experiences of autistics.
    Like many other social disadvantages, these things are often done by otherwise well meaning and good people .

    A good example is in fact the whole point of this thread.
    I am absolutely sure that when Invision made the decision to support Autism Speaks they did so with genuine good intent and good will.

    So I'm not here to paint broad strokes on people, nor am I attempting to alienate anyone specifically, I'm just trying to convey that those attitudes are in fact so common that they are felt quite strongly.
    Frequently the actions that cause such things are NOT ill intended.
    A great many parents of autistic children are examples of this, where they do things that they believe will help, with the best intentions, not realising that their actions may be contributing to negatives their own children will have to deal with later.

    This does not make them bad people, and it certainly doesn't even mean they hold some of the worse views, but if no one stands up to say, "These things are actually negative, even though you had the best intentions" then they will carry on, with those best intentions, believing they are helping.

    The only broad stroke I wish to paint is that of the general societal atmosphere experienced by me and many others.
    I do not intend to offend any individuals, nor imply that you or anyone you know holds such views.

    If I have not communicated my intent clearly then I apologise, such miscommunication is a pretty common event for many of us on the spectrum! ;)


    [quote name='Wolfie' timestamp='1344753280' post='2296095']Don't get me wrong, I see that you did provide some links, but that one line of yours, "I'm sure you could find..." just screams of "I don't have proof, so you need to go find something to prove me right." Sadly though, you could be 100% right in everything you have said but without providing the material to validate it, people are going to question and doubt what you say.

    I was just trying to convey that there are many other sources, not that I don't have proof.
    There are many more sources out there if you wished to look as well, and the autistic organisations run by autistics are probably the best sources, they likely even communicate it better than I do. :P

    I provided a few sources for those specific things, as events that I specifically remembered well.
    And I put quite a number of links to other sources throughout my previous response, I hope those illustrate the perspective a little better.

  6. Phidaissi added a post in a topic: Different Charity please   

    [quote name='TaffyCaffy' timestamp='1344697090' post='2295945']
    Try not throwing such wide sweeping statements out if you want to engage your readership. I'm not sure what kind of "general public" you're dealing with on a daily basis, but the one in my neck of woods certainly does not bear out the description you gave them. To me, (being a member of the "general public",) your statement reads as nothing more than you projecting your own outlook upon other people, with the further kicker of that outlook being pretty offensive. A chip on your own shoulder does not make for a good, factual argument.

    I think you might have missed my point.
    That's kinda like saying, "Or you're black and you think society has a generally racist attitude? Prove it!"

    I experience the results of the attitudes towards autism, everything from "Oh you can talk so you can't be autistic!" which then has my valid needs dismissed through to "Autistics can't learn in normal schools, so we're going to separate them from the rest of society".

    I am not saying any individual or your friends, or your community have these attitudes, I am saying they are the expressed results of society, which comes from many many people holding such attitudes, and a few large and very visible organisations like Autism Speaks promoting them.

    There are many people that have a good attitude towards autistics, that do listen to us and treat us with respect.
    Unfortunately they are not all of society, and Autism Speaks keeps speaking over the top of actual autistics.
    There are no autistics speaking from autism speaks , they are all NT.

    [quote name='Wolfie' timestamp='1344713474' post='2295985']
    More like, only giving the feeling or emotion doesn't make for a good, factual argument. It boils down to being nothing more than the spreading of a rumor. It's like if I were to say, "The information on IMDb isn't reliable" but providing no examples as to why I'm saying that. I may very well have valid reasons for making that comment but without giving the reasons and examples to validate the reasons, it's nothing more than a claim. Now to provide links to several pages (shows/movies/people) with details as to what's inaccurate, preferably with links to reliable sources to verify how it's inaccurate, that would demonstrate the claim.
    One of the points I tried to make was that Autism Speaks is offensive to the vast majority of autistics.

    This is a fundamentally emotional stance and point. I was not intending for that to be a matter of fact, or citation.
    It was akin to saying, "Organisation x that fights against sexism is found offensive by the majority of women".
    If most autistics find them offensive, are they really helping them?
    Don't you think there might be a reason?

    If people are interested in helping autistics, shouldn't they care if the organisation claiming to do so is actually offending the autistic community?

    [quote name='Wolfie' timestamp='1344713474' post='2295985']"Autism Speaks" could very well be unworthy of receiving donations because of the few things mentioned, but I prefer to see proof of those things. Are there any news sources that have done articles on A.S. that mention the same things? Are there people (verifiable) that have witnessed this first hand and told of their personal experiences? Regardless of the cause, any charity/organization that isn't focused on the same goals as those it's representing needs to be brought out with facts, not just a dislike. Some of them use very little of the donations for expenses and employments, while wisely using the rest for the end goal (cancer research, helping kids, feeding the hungry, etc). Others take out a large amount for nonsense reasons (bonuses, etc for those running it) while giving something like only 5% of the donations towards the advertised goal. The latter type of organizations, be it from greed, lack of understanding, lack of compassion, etc, are the ones people like to learn about with verifiable facts, so they know who to avoid donating to and warns others about.
    I understand what you're saying, but the problem isn't that they're frivolous with their money, it's that the underlying goals and attitudes of Autism Speaks are offensive to autistics.

    It's in their wording, their view of autism, their research goals.

    In most materials they refer to families 'affected by autism'.
    As though autism is a curse that affects these families.
    Then as mentioned by another, use videos and releases to reinforce that with NT parents speaking out, and encouraged to tell the world just how bad it is that they have a child with autism .

    They consistently refer to autism as a 'risk', like your risk of cancer, or risk of some disease.
    Despite the fact that it is uncontroversially established that autism is genetic !
    (Though due to the large number of contributing factors, there's no single source or genetic marker)

    The issue is that as Autism Speaks is by far the most visible and largest 'autism charity' then media and many people look to them and mirror their attitude.
    They think if Autism Speaks says it that way, it's okay to say it that way. But it's not.

    [quote name='Wolfie' timestamp='1344713474' post='2295985']What if there is simply a misunderstanding about how A.S. is operating and the few negative things are based on the words of a few people who may have had a rare bad experience from an otherwise respectable organization? Worse yet, what if some of those bad experiences weren't the fault of A.S. but rather from a misunderstanding based on what others said? That happens a lot in the world. For example, what if someone misread something about A.S. and went to someone they know saying, "A.S. will pay for you to go to college!" and that person then contacts A.S. and is told "No we don't do that." The middle person suddenly had a negative experience and may be thinking that their friend would never lie to them, so A.S. must be making false claims. So then they go around warning others to not donate to A.S. because they're liars.
    There is no misunderstanding, this is fundamental to the language used, their stated goals, and what they actually invest their research in.

    Directly from their own strategic plan they call autism a disease!

    This isn't even new from them, a few second on google and in a press release it's described as devastating news to families!
    (Oh, and that one was done with another organisation called "Cure Autism Now", I won't even start on how offensive that is.)

    They are STILL referring to autism as an epidemic , again implying that it is a disease, and also that it is increasingly common.

    As recent studies aimed at general population levels show -


    I can personally attest to that, especially for women , that under previous guidelines were almost always missed and leads to the situation where the criteria are aimed at autistic exp ression in boys, miss girls, and so autism is a boys 'disease'. I was not diagnosed until adulthood because of this.

    [quote name='Wolfie' timestamp='1344713474' post='2295985']It would also help if you provided links to sites where a majority of the community is autistic or has some form of autism and a majority of that community is against A.S. or have concerns or issues with them. It says a lot when an organization is disliked or spoken badly about from the very people it's supposedly trying to help.
    The largest 'community' would probably be the online community Wrong Planet .
    (Which is an allusion to the metaphor that autistics major issue is the society we live in, that if we lived on a planet where everyone was autistic then most of our issues wouldn't occur. So we live on the 'Wrong Planet')

    There was an April Fools article on there too, so make sure to check the date on the posts. :tongue:
    The fact Autism Speaks was the subject of such an article, and the content and strong wording of it, should say something about the community attitude to them as well.


    There are some great autistic organisations by autistics, that do have our interests at heart.
    The biggest one is probably ASAN ( Autistic Self Advocacy Network )
    They even have a flier specifically addressing Autism Speaks!




    I'm sure you could find ample information about these things, that Autism Speaks have done:
    [*]Advocated for MMR/Vaccine links to autism that were completely fraudulent . They have even supported that researcher after he was shown to be a fraud. Links here , and here . [*]Have used offensive public campaigns to raise money. Like this one , video here . I don't recall ever seeing such demonisation being acceptable elsewhere. :( [*]Consistently promote autism as a disease, even wikipedia lists it . Which also leads to their rejection of Neurodiversity approaches to autism. [*]Try to represent autism as an epidemic to scare people. Despite the fact there's ample reason to suggest that it is diagnosis becoming more accurate .

    I won't even try to outline every single issue there is with Autism Speaks.
    I am just trying to make people aware that they are not a positive force for autistics, and if you want to help autistics then please donate your money to another organisation.








  7. Phidaissi added a post in a topic: Different Charity please   

    While some aspects of the legislation they help pass can be positive (such as better or guaranteed insurance coverage, etc) there are many negatives to what they promote as well.

    When they have been confronted about such issues by autistics, they are dismissed and ignored.

    If an organisation fighting racism was staffed exclusively by white people, and ignored the cries of people that suffer racism, people would question the integrity of that organisation.
    If an organisation fighting for disability rights was staffed exclusively by able-bodied people, and they ignored the opinions of those with disabilities, there would be serious questions asked.
    If an organisation fighting sexism was staffed exclusively by men, and ignored the vocal outrage from women over their policies, people would not consider them a positive contributor.

    Autism Speaks does not represent autistics, and has actively made things worse for many, and has contributed to many of the myths and misconceptions about autism.

    So while there may have been a few positives from some of the legislation, they are overwhelmingly a source of pain and insult to the autistic community as a whole. :(
  8. Phidaissi added a post in a topic: Unapproved to hidden in upgrader   

    I recently upgraded from an old version, where we used unapprove as the means to hide posts but leave them in context (or soft-delete as many call it).

    The hide functionality is absolutely perfect for how we use the forums, but the thousands of 'unapproved' posts all over the forum were a pain.
    The upgrader should possibly ask "do you want to convert unapproved posts to hidden posts?"

    I ended up doing it with a few queries directly in the db - doing each of them via mod panel would have been way too much.
  9. Phidaissi added a post in a topic: Different Charity please   

    I noticed today that Invision are supporting Autism Speaks - http://www.invisionpower.com/charity

    I would ask that you please choose another charity, Autism Speaks are widely despised by the autistic community because they do not have our interests in mind.

    There are many many places online that will detail the criticism of Autism Speaks in great detail.
    Here is one letter someone to another organisation supporting Autism Speaks earlier this year, which may interest you: Responding to Autism Speaks

    From the letter:


    They consistently work against the interests of autistic adults, and demean and demonise autism as a whole.
    They outright ignore developments in the science... Even when they come from their own research - such as still promoting the now thoroughly disproven vaccine theory, and the overwhelming evidence that autism is genetic and not typically detrimental in itself.

    As an autistic adult and a customer, I ask that you please do not support Autism Speaks.
    They have done nothing but make it harder for the voices of actual autistics to be heard, and have been the driving force between the massively negative and dehumanising view of autism that most of the general public possess.

    If you would like to help autistics, the autism community, or research to assist those with autism, please donate that money to one of the organisations that actually do help us, and help undo the damage Autism Speaks has been doing to autistics.

    If you need more information, or would like to get in contact with organisations that could greatly benefit from such support, I am happy to direct you to the right places.

    Just please, please not Autism Speaks.

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