28 replies to this topic

[Phidaissi]

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.

[Dmacleo]

this whole topic needs to be deleted, IP should post whatever charity they donated too on their home page, customers can decide from that what they want to do, and no topics generated for it.
this whole thing is a minefield that will NEVER get better.

[bfarber]

I'm intentionally staying away from this topic, as I don't want to offend anyone. Accepting charitable contributions (and IPS making charitable contributions on top of that) is of course intended to be a good thing, and I fear no matter what charity we pick, it will not universally be accepted as a good choice.

Having said that, my son is autistic. Autism Speaks has helped us in direct and indirect ways, through literature and assistance finding local support groups when our son was first diagnosed, to working very hard to get insurance reform passed in Virginia and many other states through their Autism Votes branch (I think it's up to 39 states that have passed insurance reform to force insurers to better cover treatments that autistic children can benefit from, such as speech therapy). They provide adult services to help adults with autism, free toolkits to help educate parents and provide resources on challenges (such as dentist visits, or toilet training, two particularly challenging areas we have faced ourselves), grants for various support reasons, and so on.

They are rated as Meets Standards by the BBB, and have 3 out of 4 stars according to charity navigator (not the best, not the worst).

Perhaps the charity has offended some people with autism. Perhaps there are areas they spend on where the money could be better invested. It is hard to know all the answers, and much of this is fueled by opinion, so there is no right or wrong answer.

I can only recommend that if you feel the currently selected charity does not represent your views and goals that you should certainly not donate to them. We will be switching out charities as Lindy mentioned and we will keep feedback in mind in the future when selecting other charities to allow our clients to donate. I just hope that everyone keeps in mind that the decision to allow everyone to donate towards a charitable cause is fueled by good intentions.

[Phidaissi]

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.

[Aiwa]

I can only recommend that if you feel the currently selected charity does not represent your views and goals that you should certainly not donate to them. I just hope that everyone keeps in mind that the decision to allow everyone to donate towards a charitable cause is fueled by good intentions.

Phidaissi... I think this sums up everything...

[dr. Jekyll]

Personally, I have a son with cerebral palsy that's also in the autistic spectrum.

Having said that, my son is autistic.

I'm sorry to hear that. I'll give both of you my best wishes

[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.

[Marcher Technologies]

Not directly relevant, but must be said.... I do not in any way enjoy societies current mindset of 'Your thought processes function differently than mine, therefore there MUST be something wrong with you, we MUST cure you', and consider it to be the largest modern fallacy of society... change 'thought processes' for 'color of skin' and you realize precisely how *advanced* our society truly is.

[Mark H]

As this discussion has been answered by Management, and has run its course with differing opinions, it's time to bring it to an end.

Thank you all for your input.