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Just because an author with Autism joined the organization, it doesn't mean he (or she) is on the Board of Directors, and therefore in a position with the power to affect what happens in the organization.



Yes, I have emailed several people from Autism Speaks, and very respectfully. What I got in return was a lot of "Oh, its nice to hear from someone who is okay with being disabled."

And I was mentioning what several of my friends from college with family members in Autism, as well as several of my own family members thought, not the general population with AS or Autism.

It is not normal customer service protocol to defend a criticism, because that can be seen as confrontational by the customer or person making the criticism or complaint. Likely you'll receive a comment like: "we appreciate your feedback on our organization, we take all feedback in serious consideration to make continued improvements in our organization".

I wouldn't go so far as to say that the author won't have an influence on policies like guidelines for research. It is apparent, that someone has influenced Autism Speaks in addressing the needs of adults with autism, from their latest guidelines for awarding research grants. I'm not saying that was specifically related to the author, but one can't completely discount that his opinions won't have a similar cause and effect.

If the author has no influence, why would any letter of criticism have an influence? Peoples opinions and criticisms do count. Successful organizations listen to people's criticism; they want that kind of feedback. If a rational change needs to be made, they make it; it is only to their benefit to do so.

I think the problem most people here have with the organization is that it does not listen to those of us on the spectrum who are high functioning enough to offer intelligent input. There are plenty of us, in all walks of life, yet not a member of the board who is on the spectrum? Why not? As a person who could very well DO some of the research you're talking about, I have to ask WHY NOT! I know that the Epilepsy Foundation has board members who have epilepsy, from personal experience. Why does Autism Speaks exclude well-educated persons who have the so-called disability they claim to serve? It's not like we don't exist. The inclusion of high-functioning people with epilepsy on the board of the Epilepsy Foundation has NOT resulted in epilepsy being overlooked for those more severely affected, so that argument is lame. I would just like to hear a valid, sound argument for excluding us from an organization claiming to represent our interests! Maybe some of us don't want to let NTs "just help us" and not have a say in how that gets done.

Some of this is playing devil's advocate, because I do appreciate any research on autism, but there is a limit to my patience with exclusion of any kind.

~Kate

That doesn't make sense.



A cleft palate is genetic, but it can be "cured" or fixed. There are many other examples of genetic conditions that can be "cured".



Virtually all large-scale charities work like this.



Autism is overwhelmingly a bad thing. That's just a fact of life. Of course, there should be people/groups that lift up the good aspects of autism--hence the existence of things like this website.

The people on the board don't do the research, so you could put in an application for a grant if you actually wanted to take part in research, but I understand that's not what you are saying.

If you have a good idea for research guidelines, it would be beneficial to give them that feedback, whether or not you were on the board. The board doesn't make those decisions on their own without external influence from experts. And the author with Autism that is part of the organization does have the ability to give his unique input as a person with Autism.

Having said that, I see no reason why a person with Autism couldn't be part of the board. They made a change in advertising, so if they receive enough comments that someone on the board should have Autism to give that unique perspective, you will probably eventually see that also.

If it was a big concern for the people that are sending them funding, they would have probably already done it.

They could easily find someone with high functioning Autism that supports research, the search for a cure, treatments, prevention, intervention, and all of the other components of their mission; they have no concern there in regard of having someone on the board with Autism.

My point earlier on the nomenclature of Autism Speaks was a literal one not intended to suggest that a person with Autism that has good verbal skills can't address the problems of those that have difficulty with communication.

Interaction between researchers and people with Autism is required in many research avenues that Autism Speaks supports, so those voices or communication assisted by technology from Autistic people has been part of the results of research that have led to the developments that make life better for Autistic people for years now.

Thousands of researchers have been involved in this process. In all likelyhood a percentage of those thousands of researchers have an ASD; that is a field that people with ASD's do well in, and a perfect interest of research for them

Autism Speaks is in no position to collect that kind of personal information to release it to the public as to what percentage of the research is done by people with ASD's. But it's not likely that only NT's are involved in the breakthroughs that research provides.

If one looks deep enough into the subject, so many positive factors can be found in the organization that influences the life of Autistic people.

The historical harsh advertising ads are the only thing that I have seen so far, that can be considered as objectively harmful to anyone, that has been addressed, and Autism Speaks has taken action to modify the ads. I haven't seen anything else specific that is causing any actual harm to anyone with Autism.

There are those that have fears of what might happen in the future, but there is nothing grounded in the present that I see as negative that is actually hurting anyone, but fear of the unknown.

I think one should weigh the perceived negatives against the measurable good things that the organization does for Autistic people as a whole, in making a decision on the organizations merits.

Interesting. The reply you got suggests that you wrote to tell them that being autistic is just fine with you. Offering criticism instead of help maybe? I got offered work reviewing their research proposals with opportunity to work my way into other areas when I contacted them. I haven't taken them up on it yet. I am working right now with ASAN and trying to understand the politics that are involved to see where I can have the biggest influence. The facts are that Autism Speaks has a pretty amazing track record for influencing and for results. They do this by seeking out top notch/quality people to serve on their board. They do not seem to discriminate against people who have autism in their selection process. The facts are that when selecting a board for a company, it is very, very hard to find successful business people in the autistic community. We are few and far between.

While this is certainly true, the mission of Autism Speaks is not one the requires only business expertise. It is an organization that serves the autistic community and part of that service includes understanding that community. Surely that understanding would be furthered by having someone from that community in the inner circle, no?

I'd be very interested to hear more about your experiences if you end up reviewing their research proposals. The politics between ASAN and Autism Speaks really bothers me so anything you learn regarding that would be very interesting as well.

I actually sent something like this, though worded a bit better. I don't think they got past the, "I'm an individual on the spectrum and I'm perfectly happy with myself," part. And I know that it is hard to find successful business people who are on the spectrum, but a big part of my argument is that they don't include anyone on the spectrum even to advise on where to send money. Seeing as many of them are parents of children with Autism, they naturally would want to put more money to finding a cure or better treatment or ways to diagnose earlier in life.



Those who are on the spectrum have insight as to what is needed more than an outsider looking in.



A cleft palate is genetic, yes, but it manifests itself as purely physical, as do most of the genetic conditions that can be "cured." And, by the way, what we call "curing" a cleft palate doesn't actually cure it; to completely "cure" a cleft palate, you would have to alter the structure of the genes that create a cleft palate. Autistic Spectrum Disorders aren't purely physical, but mostly neurological, so how could you cure that? You would have to figure out exactly what the cause is, and fix that! At this point in time, we don't even know exactly what causes Autism, and we certainly don't have the technology to "fix" it.

I see alot of fear in this issue - on all sides.

Autism Speaks preys on fear in their advertising.
The autistic community fears their 'cure agenda'.
Parents fear autism today the way they used to fear downs syndrome and spina bifida in the past.

Autism Speaks is well aware of how a portion of the autistic community feels. Instead of digging in and ignoring it, it would do worlds of good if they met the criticism head on and worked toward bridging that gap - creating understanding. When they refuse to even acknowledge their detractors, it only appears that they are trying to 'hide' something. The fact that the organization does seem to have a concerted effort to shut out the opinions of the autistic community does raise red flags. They are under no obligation to entertain EVERYONE'S opinion but it is especially disconcerting when the organization claims to speak for an entire community of people then shuts out their voices.

The autistic community needs to look at ALL the work Autism Speaks does and not get stuck on the the single line that says 'cure'. They have the potential to do many good things and, their aims seem to be guided toward better lives for their children. Some of that may be misguided but demonizing everything they do is a bit overboard. Whether people like it or not, some good is actually coming from some of their efforts.

I have looked at their financials. I am not impressed with their track record. They spend an inordinate amount of money on fundraising efforts - a questionably high amount. Sure, board members of every major charity get paid extremely high salaries but most of those charities have better track records. Autism Speaks has yet to be endorsed by any charity watchdog group or by the BBB - all siting financial reporting as their major reason. When I donate my money to the Red Cross or to WWF I know where my money is going down to the cent. With Autism Speaks, no one can have the confidence that their money is making a difference.

You have any links to supporting documentation? It would disturb me quite a bit if their financials were not in order.

US Better Business Bureau report on Autism Speaks

I am also in a state that requires disclosure from charities. I needed to pay to receive a copy of their financial statements directly. I'm still waiting on mine from my Dept of State. Unlike other large scale charities, Autism Speaks does not openly provide their financial records. The World Wildlife Fund has links right on their webpage to view their financial records for the past 10 years or more.

I'd be real curious to see if anyone has a weblink to their current financials.

That BBB report cites only one problem and that is not directly related to their financials. Their ratios of salaries to services are in line with BBB standards. Most of the negative stuff I've found is in blogs and things that appear to be against Autism Speaks from the first words. If you get hat stuff from your State, it would be interesting to hear what's in it.

So far, the biggest "crime" I've seen from Autism Speaks is a heavy handed approach when dealing with opposing viewpoints. This may be stupid from a public relations perspective, but hardly worthy of the vitriol I see leveled against them. They seem too quick to defend their brand and it makes them appear callous and overly corporate. I see the same level of defensiveness in the neurodiversity movement. Too much black and white thinking going on. It's not helpful, if you ask me.

The biggest thing on the BBB report was an issue, basically, with the truth of their advertising. Another of the hot topics.

Any large company that refuses to share its financials in an open forum is automatically deemed suspicious. I may be guilty of that. I'll find out sooner or later if it is true. Once I get those reports, I'll gladly scan and post them if people are interested. But, even if they are squeaky clean, I'm still not sure I'd toss my hat in their ring. There is no group that endorses Autism Speaks and I find that troubling for such a large charity. Some of their older financial reports state some very lopsided numbers.

Autism Speaks 2008 990 tax form

I can't find anything more current than this so my opinions are based on this. I concede, things may have changed in 3 years but I'll believe it when I see it.

They have done some wonderful work yet they are willing to see it all discounted for the simple reason that they will not address their detractors. Why? Even Obama ponied up his birth certificate even though the charges were idiotic. In the name of the good works they do, why wouldn't they answer the negative criticism even if only to say 'Yes, you're right, we aren't perfect, we need to work on that." If they are speaking for the autistic community why wouldn't they try harder to gain the support of that community rather than shutting out its concerns? Something doesn't add up there. Especially if you read the organizations mission statement on that tax form...

"...AS aims to bring the autism community together to urge government and the private sector to take action to address this urgent global health crisis."

I'm not sure how banning Aspies who are happy with their dx from their message boards fulfills this goal. Wouldn't they desire the support of happy well adjusted Aspies?

It is on their webpage; you might have missed it. The latest one is for 2009, but it's not unusual for organizations to release the previous years Annual Report until months into the new year. Here is the link:

http://www.autismspeaks.org/annual_report.php

Everything is in order in the Financial Statement and meets BBB requirements for charities.

The issue with the BBB was an oversight in detailing the percentage of money collected through their involvement with an affinity credit card program through Bank of America and the percentage of money that was donated by Bank of America when someone used the credit card.

That in no way fiscally impacts the consumer, since the money doesn't come out of their pocket. That issue was quickly resolved; the information is on their website. Here is the link:

http://www.autismspeaks.org/corporate_partners/bank_of_america.php

I can't think of any reason why an organization would purposely hide this kind of information for some kind of devious purpose. Hundreds of organizations do the same thing and it is commonly understood that the money that is actually donated by the bank is an insignificant amount per customer, but it becomes more significant when a number of customers participate.

At most this is just an oversight and technicality that doesn't meet that one particular requirement of BBB.

Last edited by aghogday on 03 May 2011, 1:58 pm, edited 1 time in total.

What do you mean by "endorses"? BBB does not actually endorse any groups. Are there charity watchdogs that list good and bad charities that give Autism Speaks a thumbs down?




As I said earlier, this seems more like heavy handed protection of their brand. I think it's misguided and counterproductive. But it doesn't make them the spawn of Satan.

I guess my hope is that the various autistic advocacy groups quit this stupid infighting. There are lots of good ideas getting lost in the heated rhetoric.

I did miss that - thank you!

The numbers don't seem bad at first glance but look at where the expenditures have been. Yes the salaries are high. All big corps have highly paid coporate officers. (ethical grounds for a charity withstanding... ) 70% or so of their revenue goes to 'programs' - all of their programs. A large chunk of that revenue went to their public awareness campaign. You know, the one they pulled because of the public outcry... It was so bad, the UK branch of Autism Speaks severed its connection to its US parent.

The question may not be how they look on paper but more in practice.

They do have several published studies now - not so well known because they are - understandably - science heavy. Not as sexy as an inflammitory ad campaign to the bloggers. Somewhere, in all this mess, lies an answer. For now, I still choose to support other more community friendly organizations, where I can see the effects of my support.