The Problem with Autism Speaks
 

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.

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

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

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.

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.

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.

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.

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/

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.

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.

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.

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.

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.

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".

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.

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?

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.

And seriously, the world would be a worse place without autism? That seems to have made the leap from tolerance and acceptance to WANTING diseases. I guess the people around you can take all that happiness and leave the fully functioning healthy lives for the rest. If that's your gig.

Yes and I've had someone tell me conditions such as autism are merely differences that should be celebrated just as sexual orientation, race and ethnicity, gender, and aging are differences that should be celebrated.

Uh...that is such nonsense for so many reasons that explaining the nonsense could be its own thread. That is the newfound fragility of humans (especially in nations like the USA) and, as DubaiSis stated, pretending as though conditions such as autism are God's gift. We can love, appreciate, and empower people with conditions without REALLY believing "this is awesome and you're just like everyone else." There's this man with a condition who is successfully functional and running his own business partly because no one made excuses for him or treated him as though he is inadequate. But I'm sure no one is relishing over his condition as though his life is so awesome BECAUSE of his condition. No, his life is so awesome IN SPITE of his condition.

It also reminds me of that show on TLC where people are eternal "children" who don't change in size, brain function, or anything. This dumb woman had never sought help for her son's condition including never going to the doctor and asking "what's going on? Why is this happening?" She was just excited to have a perpetual child who needs her to wipe his ass (surely she has no life and no value outside of being needed in this context). That is extremely sickening and as far as I'm concerned her desire to see her son as just "different" borders on "child obsession" and "child abuse".

I think Greek orgs and their membership would be looked upon far more positively (not to mention the members would get a more positive benefit) if each chapter could gonback to choosing a local philanthropy they could do hands on work with. Bag the national philanthropies, which sometimes all the groups can do is contribute monetarily. To get the money, too often the groups either have annoying fundraisers or else an event that appears to onlookers more social than philanthropic.

The Delta chapters I am familiar with in different regions support local charities that are in line with our Five Point (Programmatic) Thrust.

Yes. Maybe NPC groups should follow more of the Junior League model of focusing on helping specific causes within their communities, based on a general program. The NPHC alumnae chapters with which I'm familiar have a similar service structure.

Back to the original topic--using the OP's logic, one could say, "without schizophrenia we wouldn't have John Nash." While a limited number of people with a condition may thrive, it doesn't discount the people (and their families) who suffer due to this condition. Wanting to prevent it--or simply learn where it originates--doesn't discount those people.

At what point was it that sororities all started having national philanthropies? We had a local one when I was active, but I know some of the chapters on my campus did have national ones. Late 90s? Early 2000s?

Whenever it became obvious that it was a marketing/recruitment tool that had that "name brand recognition". Nobody knew what "Choose Children" was and it was AWESOME. Let's be honest. Choose Children can't compete when you have orgs on campus that have philanthropies with other BIG names that are very nationally recognized by anyone who isn't living under a rock.

Now that you say that, I do recall feeling underwhelmed (as a rushee) by our philanthropy.

When I went through recruitment there was one group I was very unimpressed by during philanthropy round because I couldn't figure out what their philanthropy actually did to help people. My best friend refused to go to a COB event this group was holding for the same reason-she didn't feel she could accept a bid to a group whose philanthropy she couldn't support.

I know that ADPi's requires a little explanation, since upon hearing the name Ronald McDonald people immediately think of McDonald's (and rightfully so), but I feel that the volunteering my chapter does has a direct impact on the families staying at the Ronald McDonald House in Greenville, SC. We send girls out there frequently in addition to the fundraising we do.

Personal Response...
 

I know I'm not going to hit all of the points that everyone has made, but I'll give it a try.

My wife is on the board of the Asperger's Association of Greater Washington and knows the founder of the ASAN (Autism Self Advocacy Network). She has been to events protesting Autism Speaks.

1) Austism Speaks (AS) is completely uninterested in having anyone with any diagnosed Autism Spectrum Disorder on their board. To them Autism is *only* the situation that the founders have, being grandparents of a child who is unable to communicate at all. Those with Autism who are high Functioning are inconvenient for their concept of Autism being something that can be cured.

2) AS has invested money in to the high doubtful and now completely discredited concepts of Mercury in Vaccinations and has only recently stopped supporting Wakefield's "research".

3) AS's research into *prevention* of Autism includes continued belief in specific genetic markers (such as those for Tay Sachs) as well as tests in amniotic fluid, which only makes sense if you are willing to consider that bringing an autistic child into the world is so bad that aborting the child based on that is reasonable. Of course *that* assumes that the condition is so well defined that you can actually look for markers.

'Autism Speaks', but it sure as h*ll doesn't speak for me.

In that case, how can we trust any "warning signs" or predispositions for any condition?

There are people who do not have biological children because of warning signs and predispositions for certain conditions. There are also people who insist on having biological children despite (and sometimes as a result of) warning signs and predispositions for certain conditions. I am in favor of the former rather than the latter but people should do what works for whomever (the biological parents? The future offspring?). I'm also pro-choice so people need to figure out what they are willing to endure based on whatever information available.

Let's use Tay Sachs as an example. Genetically it is recessive and based on a single gene and kills by age 5 generally. In the Orthodox Jews in Israel, young people are tested assigned a number and a couple of is interested in each other can enter both of their numbers into a computer to see if they both carry the gene. That's with a single gene.

Breast cancer, you've got about 5 or 6 different genes which lead to higher risk, get any one or two and you've got a higher probability.

Autism and Homosexuality, OTOH get a *lot* grayer. You're looking at a *lot* more genes, less ability to eliminate environmental factors. And they aren't even close to having a blood test for it. It is entire possible that both of these are neither genetic or environmental, but rather a complex effect of what genes are expressed and which are shut down in the course of fetal development. So since in both cases, you have examples of identical twins raised together that end up with different results (gay/straight) or (Autism Spectrum/Neurotypical), what do they expect to be able to look for?

Also for Autism Speaks, what exactly is a cure? You're dealing with the basic wiring of the brain in how the brain processes input. Do I think that there are exercises that through repetition will help with processing input better, probably, but that that point you are at psychological treatment, not psychiatric and certainly not the pill/shot that would represent a cure to AS...

Do you consider this a disease, disorder, or condition?

Too many posts to quote, but maybe the problem is that nowadays the word autism simply covers too much. I'm in my 40s and have always heard of people being autistic, but for the majority of my life it was only applied to those in the lower functioning end of the spectrum. Until it's ascertained how it occurs, perhaps it would be beneficial to have more names for gradations of the spectrum (like Asperger's).

Are you sincerely correlating homosexuality with autism?

Certainly *not* a disease, *perhaps* a disorder only in some technical medical definition that covers considerably more than the average layman would expect and I have no idea what a condition would cover.

And only "treatable" in ways that rip gigantic bleeding gashes in the psyche and the soul.

Autism today *certainly* covers a wider range of neurodiversity. What's still unclear to me is that is whether the percentage of those who are autistic still increases if viewed with a constant definition of who is autistic.

High Functioning and Low Functioning are used in diagnoses, but again, trying to draw a bright line between them is difficult.

Huh? Where did I indicate that there is any correlation between homosexuality and autism? I have seen *no* studies indicating that someone who is at either end of the Kinsey scale is more or less likely to be at any level on the Autism spectrum.

I guess I don't understand why you're bringing homosexuality into the discussion of autism, period. The Kinsey scale goes from homosexual to heterosexual. The autism spectrum goes from mildly autistic to severely autistic. Are you comparing homosexuals to severely autistic individuals? Mildly autistic ones? What the hell, dude?

No no no no no. Don't get it twisted. He's just talking about those two things as two things whose causation can maybe be found on genes. Call them boodle and moodle, if it will raise fewer moral hackles.

I'm sure he brings up homosexuality because there has been discussion in scientific communities of finding a genetic test for homosexuality. I'm sure there are families out there that would have a hard time wrestling with their anti-abortion views would they find out their fetus was positive for a hypothetical homosexuality gene.

There was a recent study by the way demonstrating abnormalities in fetal brain development in patients with autism that were donated to science after death. The brains were compared to normal specimen, and researchers noted a jumbled appearance of the normal layers of the cortex in varying areas of the brain. This would explain the variable symptoms and severity in the spectrum.

http://www.npr.org/blogs/health/2014...ntent=03032014

Really? Interesting.

We know the history and present day significance of social, psychological, and medical views and studies of homosexuality.

Naraht should have clarified if he, himself, is placing homosexuality in the spectrum of diseases, disorders, or conditions. That is what I was asking him to clarify and his response implies he, himself, is either being sarcastic or places homosexuality in the realm of "disorders". If he was making a general statement it is easy to clarify a general statement by stating that your post was based on centuries of world views on homosexuality as deviant, criminal, and socially, psychologically, mentally, and medically problematic.

Maybe one of the doctors on here and help me with this one but, I read a study that Autism could be linked to the mother being obese when she gives birth. Is this true? I know very little about it other than the diagnosis (DSM-IV and DSM V) but, I was wondering what types of things apparently caused it? Is it genetic? Can it be caused based on health-related concerns of the mother or father? Any insight would be greatly appreciated.

^^ I only have anecdotal evidence, but I do know several moms with children that go the gamut on the spectrum from high functioning to low functioning. Not a single one was even a little overweight. Two of them have verged on being freakishly, awesomely fit. But again, that's just anecdotal.

If I misunderstood naraht, I sincerely apologize, but if he is calling homosexuality a disease, then I'm going back to what the hell, dude.