The Problem with Autism Speaks

[WhiteRose1912]

I hate to do this but it's been eating me up inside.

While I am pleased that more and more people are looking to support autism awareness each year, I have to urge GCers to please steer clear of Autism Speaks. AS views autistic children as diseased, rather than different, and directs their research and rhetoric accordingly. Very little of the money raised by the organization goes to actually supporting autistic people and their families. (According to the Autistic Self Advocacy Network (ASAN), it's 4%.)

This essay, What's Wrong with Autism Speaks?, covers many of the issues and has links to other, similar posts by autistic people. More information is also available in this Psychology Today post and this letter from ASAN. It pains me that one of our NPC organizations is aligned with this very controversial organization.

[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.

[Griffins&Quills]

Originally Posted by WhiteRose1912

It pains me that one of our NPC organizations is aligned with this very controversial organization.

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.

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

[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.

Don't get me wrong, I read that they've raised over $1 billion for breast cancer research, but it's a little sketchy that research only gets 20% and the CEO makes $700,000 a year.

But I agree with you, they're both charities that do raise money, but there are definitely better organizations that would give all the donations directly to the cause at hand.

[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.

[Sen's Revenge]

Generally speaking, and contrary to what most national organizations do, I try to "donate locally" to those organizations which are actually doing good in the community in which I live. It is also easier to hold local organizations accountable.

Regarding any "Big Philanthropy" organization, I try to listen to the people the organization actually impacts and give where they suggest, even if it contravenes what my organization says.

Because let's be honest.... Big Greekdom needs Big Philanthropy to appear relevant.

[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.

[DubaiSis]

I was very disappointed to hear when we took on this charity but over time learned that Autism Speaks focuses on research and not on blame, social issues, etc. I have said, jokingly, that if the baby comes out ugly people blame it on autism. Of course that's not true but I am a firm believer in treating it as a preventable, treatable, curable disease. Someone else can worry about living with it, dealing with stigmas, barriers to education, etc.

Mother Theresa once answered the question about why she doesn't help with education, training, politics, etc. to get people out of poverty. She said it's not her job. Her job is to feed the poor. People with Autism spectrum disorders have a lot of needs; research is part of that. And Alpha Xi Delta's job is to fund that research.

And by the way, the fraternity at the national level has given a LOT of money to the national Autism Speaks organization, but local collegiate and alumnae chapters give plenty of time to the non-medical aspects of autism needs as well. I would love to see us put a national push on the correlation between what we eat and autism. Hopefully that is something Autism Speaks is working on. When that day comes (and I really think it will - that the disease is caused or exacerbated by avoidable chemicals in our diets), then we can throw all of our tremendous power at educating people about this aspect of prevention, treatment and cure.

[pinksequins]

A bit of a hijack to respond to Sen's post. Sen, I agree with your sentiment about donating to local charities. More than the accountability, I feel good when I can visit a place and see the results of my contribution (combined with others' of course) being put to use.

[DrPhil]

There is a broad spectrum of autism. I have people in my family with autism, with autism that is sometimes highly functional but sometimes so extreme that they are in their late-20s and function as though they are 14-16. They have low functioning jobs and an inability to live on their own, inability to utilize their high school diplomas, inability to read a book on their own that was written with elementary school students in mind, and inability to have a full and coherent conversation with adults their age.

Therefore, I agree that autism is a "disease" and "disorder". It is far from being just "difference". I have no problem with organizations that view and research autism as a "disease and disorder".

The highly functioning people with autism and aspergers (there are also people in my family with aspergers) are closer to "difference".

[andthen]

I agree with the concern expressed by others as it relates to the absurdly high salaries that some of these organizations give. I understand that charities absolutely rely on paid staff to keep things moving ahead. But if someone from a "non-profit" is pulling in a check that is comparable to a banking exec that irks me.

I've met and interacted with several people who are in the autism spectrum. Similar to what others have written there are some that are higher functioning and others with profound issues that make them quite dependent. Even with all of the research that has been done to date, this is a relatively newer health issue that has been given a name. I'm sure there are many people who have had this disorder for a while and were likely mis-diagnosed with some other issue because before there wasn't a category for autism.

I am supportive of health research if it helps to shed some light on the hows and whys of health issues. Without understanding those fundamental things, there will continue to be a stigma attached with certain health issues. I am a firm believer, lack of knowledge helps perpetuate ignorance.

[DrPhil]

Also, I take issue with everything being presented as "difference" as though this is a theoretical challenge to definitions of "normal" and our ability to accept and celebrate our differences. That theory works in practice when talking about some conditions but not for every condition.

The need to make everything about "difference" reminds me of the shift in the 2000s of teaching children there is no 1st place. Everyone wins and those who finished last just had a different way of finishing first...because everyone finishes first. When did humans become so fragile?

[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.