The Problem with Autism Speaks

[WhiteRose1912]

Originally Posted by Kevin

I don't really have a problem with that approach. If they can do research to prevent children from developing autism, power to 'em.

Autistic people generally don't like to be further stigmatized. And our world would be a worse place without autism. Temple Grandin immediately comes to mind.

Originally Posted by Griffins&Quills

As general members, it's not really our choice. Nationals decided and announced the partnership with Autism Speaks in 2009. Before that, our philanthropy was Choose Children which allowed chapters to individually pick organizations to support.

I know this. I was a collegian when the announcement was made and I was saddened that I could no longer support our local chapter's philanthropic efforts.

Originally Posted by Griffins&Quills

ETA: There are controversies (as you say) with a lot of organizations (Susan G Komen, UNICEF, etc) where only a small amount of donations actually goes towards the cause and the CEOs are making a $500,000 a year salary

Originally Posted by WestcoastWonder

Ugh, this reminds me of the whole Susan G. Komen/Breast Cancer Awareness situation. I support all legitimate, reputable charities and non-profit orgs, but I don't like how only around 20% of the millions raised goes to breast cancer research..

I haven't donated a dime to Susan G. Komen since the Planned Parenthood fiasco.

I have no idea what percentage of AS's budget goes to research and what percentage goes to administration. I do know they've sunk millions into trying to prove that there was a link with vaccines to no avail (and compromising our herd immunity in the process). My concern is that only 4% goes to helping families learning to embrace autism or helping autistic individuals. Y'know... actual autistic people who need help.

[AOE-7]

http://www.charitynavigator.org/inde...0#.Uz3sl_ldXjk

Lots of orgs aren't what they are cracked up to be. One of the most eye opening videos I ever watched that has made me more critical of every charity group as a result is this:

http://www.chrisbeatcancer.com/why-i...-for-the-cure/

[KDCat]

I am very familiar with the controversy over Autism Speaks. It's quite a bit like the controversy over Jerry Lewis and his fundraising for MDA.

The criticism that Autism Speaks puts too much emphasis on "disease" and "disorder" rather than "difference" has some merit. At the higher functioning end, ASDs really are a difference, rather than a disease or disorder.

At the low functioning end, though, these are debilitating conditions. "Difference' doesn't really cover it when you are still changing diapers for a 13 year old that will never speak or potty train. Those people can't talk about whether their condition is a difference, rather than a disorder or a disease.

Autism Speaks does a ton of good. They provide solid guidance on treatments, interventions and therapies. They lobby for research money. It's an activist group. They never intended to be primarily a group that works directly with families.

The small amount of work that they do for families is gold, though. They distribute a 100 Day kit to parents of newly diagnosed kids that is worth it's weight in gold. It includes instructions on what to do after the DX and an explanation of therapy options. They maintain a database of resources across the US that families can use. They raise awareness.

[amIblue?]

Autism has such a vast spectrum that I'm not going to criticize any group that is sincerely trying to help. Just in my own narrow experience, a dear friend has a sister with Aspergers, and she fits the "different" paradigm. She's highly intelligent, holds down a job, but she did have to be taught some things that most people just instinctively know. On the other hand, I have another dear friend who has two sons at the low end of the spectrum, who will never be able to live on their own, care for themselves, or really much of anything. I don't know if even their loving mother would consider their condition as merely being different in the same way the woman with Aspergers is. Their care does involve the diapering of teenagers and helping them to eat. I wouldnt wish that kind of life condition on anyone.

I think if there's a way that the lower end of the spectrum can be prevented, then science should work to find it. That is in no way, shape, or form intended as criticism of the Temple Grandins of the world or a lack of appreciation for their contributions.

[Kevin]

Originally Posted by WhiteRose1912

Autistic people generally don't like to be further stigmatized. And our world would be a worse place without autism. Temple Grandin immediately comes to mind.

How does research to prevent a condition which might render someone physically dependent for the rest of their lives and unable to process ordinary stimuli without experiencing distress? Choosing a path which might result in more people developing autism rather than fewer seems pretty cruel if only to spare the feelings of a few people who apparently think research into their condition might stigmatize them.