Phidaissi

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.

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.

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.

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.

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.

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.

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!

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.

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.