Posted This On Autism Speaks Facebook Page

Post Reply New Topic

You're kidding me right? You think that "being on the spectrum" somehow qualifies you to run a business and give advice on spending money? This attitude that we are somehow "entitled" to these positions because we have a disability is astounding to me. Name ONE just one autistic person (besides me) who is thriving in the corporate world. I have yet to find one. So far I have yet to even find my peer who is openly autistic though perhaps they exist somewhere. And even I am humble enough to know that I am not qualified to join thier organization and make meaningful recommendations to their board on where to spend their money. Running a business and being on a board of a business as large as theirs takes a tremendous amount of skill and energy. Have you even looked at the resumes and history of its board members? Compare them to an org like ASAN and see if you can conclude the differences.... Hmmmmm....

All these "claims" about Autism Speaks being unwilling to work with people on the spectrum has not proven to be true from my experience. I have email from one of their board members to prove it. Net is that Autism Speaks has demonstrated to me their willingness to work with qualified individuals on the spectrum who can present themsevles in a professinal manner and work "with" them in a realistic role. Is that ideal from an advocacy point of view? This I do not yet know...

While it is great that your choice is to support other organizations it is important that we all look at the actual FACTS about this subject and stop with all the bashing based on things we have heard from this or that other source. The actual data simply does NOT support the claims.

This is why I get so frustrated at all these messges and half-cocked statements being made by people on the spectrum and why I keep begging people to PLEASE do the research before making public posts to place like Autism Speaks FB page.

They provide an approval rating, some organizations rate it on a scale - in all instances, they do not get high ratings or approvals for a variety of reasons.



I have never gone that heavy handed - into the spawn of Satan zone. I'm not supporting in fighting but I also will not deny some of the things I find questionable. Everyone is entitled to their opinion. I wasn't aware that mine was now 'rhetoric' because I also question some of the things the more heavy handed detractors rail against.

The public education initiative that they spent much of their funding on was represented, in part, by that video that so many people site as so heinous. It was so controversial that it split the organization. That makes me question all sorts of things. Questioning that which is perceived as a problem isn't 'infighting'... I believe that other autism support organizations have reasonable cause to be asking some of these questions.

I still question the financial records. When I get the hard copies, I want to see if they do disclose actual program expenditures - where the money is really going. I do not question that they are doing some good. I question if they are living up to their mission statement. They are not an organization interested in helping individuals - they are treating autism from a much broader scale. BUT, their advertising leads people to believe that they do help individuals. I want to know how much of their money goes into this sort of advertising/program expenditure.

If that is half cocked, well then, it is what it is.

I have to grant you some slack, here. You seem far more level headed in your criticism than a lot of the over the top shrill invective that I see. I would like to see more substantive information. Tons of fluff out there to sift through. What I have been able to find puts Autism Speaks in the middle of the pack when it comes to charitable organization ratings. Not great, not heinous.

Then the reason autism can't be "cured" isn't that it's genetic, it's that it involves a part of the body that we don't know how to fix so well.



You are presenting an arbitrary definition for "cure".



Um...neurons are physical things.



We know what causes autism. Our ability to "cure" neurological conditions is certainly very limited, but this has nothing to do with whether or not it's a genetic condition.

**Just a correction: Isolated cleft palate is multifactorial, not solely genetic. Subsequent children of parents who have one child with isolated cleft palate have approximately a four percent risk of recurrence, in general. This doesn't apply to clefts that are part of another syndrome that is autosomal dominant, autosomal recessive, X-linked or otherwise genetic. Cleft palate can be completely repaired surgically, such that the individual does not have an opening in his/her palate any more.

~Kate

I think being on the spectrum *does* matter to one's ability to give recommendations. The Epilepsy Foundation has people with epilepsy on its board and has for years. It only makes sense that people who LIVE WITH a given issue have knowledge of what it is like and what issues need to be addressed that people who don't live with it have no clue about. I wouldn't know how to advise an advocacy and research group regarding issues related to blindness because I can see. I have epilepsy and Asperger's syndrome, so I am able to more readily give advice on where improvements are needed with regard to those issues. It only stands to reason. I'm not saying having an ASD is the ONLY qualification one needs, or that ONLY ASD people are qualified, but having NONE???? Plus, those ads they used to run? Yeesh, I still shudder when I think of them.

BTW, I've had my own business since 2001.

~Kate

Am fascinated.. Tell me more. Me thinks we might be talking apples/oranges here.

1. I think almost anyone on this board could have told autism speaks that some of their ad campaigns are sufficiently negative to get up the backs of people who live with autism. That alone could have saved them quite a bit of controversy and wasted money. You don't need to have been successful in the corporate world to know when you see something offensive-but being autistic does help.

Their publicity campaigns alone are harmful to autistic people and demonstrate a lack of consultation with the autistic community.

"Autism Genome Project

Launched in 2004, the Autism Genome Project, or AGP, is the largest study ever conducted to find the genes associated with inherited risk for autism. Many of the world's leading genetics researchers pooled their resources and used a promising new technology, the DNA microarray, to scan the human genome in the search for the genetic causes of this devastating disorder, which continue to elude the medical field as prevalence rises.

The project is a public/private research partnership involving approximately 50 academic and research institutions that have pooled their DNA samples in a collaborative effort. It is designed to enable doctors to biologically diagnose autism and enable researchers to develop universal medical treatments and a cure.

The first phase of the project, a research partnership with the National Institutes of Health, consist ed of two scans of the human genome searching for autism susceptibility genes. The scans analyzed DNA samples from nearly 1, 200 families."

This is a direct quote from their website, explaining some of the research they fund. I oppose genetic research, because I think it is likely to lead to genetic screening and abortion, which I consider to be murder. Our society (certainly in the UK) is not mature enough, selfless enough or moral enough to deal with having genetic information without using it to test and abort foetuses. Autism Speaks knows that, and they are funding this research anyway.

That is why I oppose autism speaks, strongly and completely; I don't need any other evidence. The fact that they are knowingly funding research which other people will use to commit genocide is enough for me.

Comparing abortion and prenatal testing to f*****g genocide is really, really offensive.

A medical practice (solo), and I am currently in the process of starting a translation business (I know English, Spanish, and Romanian languages). I worked for other practices prior to 2001 when I started my own (even though never getting a real day off sucks, it beats having to deal with the personalities of coworkers, especially those who tried to take advantage and I never could see it until it was too late...I like my current situation much better) Too soon to tell about the translation business

~Kate

You have a right to that concern. That particular project found a link between a genetic deletion that not only is associated with Autism but other life threatening health problems. Autism didn't kill my child, but those related health conditions did.

While you have a right to that concern, a parent should have the opportunity when available for genetic testing that might lead to either a cure for their child or for solid information on the risks of having another child that not only risks autism but other more serious life threatening conditions.

My wife and I weren't willing to risk another child coming into the world with the potential of suffering that the our first child experienced. However if we had solid information on the risks determined by genetic research we might have been more comfortable with a decision to have another child.

There is one family that had a child with Autism that they love very dearly that donated $1 million dollars to this project. Autism Speaks is just a drop in the bucket for this kind of research.

For those parents that had the kind of concerns that my wife and I had, that have those kind of resources; it would be impossible to exhaust the availability of the resources regardless of who collects the funding.

The largest contribution Autism Speaks makes is providing greater awareness of the condition. While we might not agree with the ways they have done it in the past, it has objectively improved and there is no reason why we won't see further improvement in that area.

The value of genetic testing becomes more evident once one witnesses their child suffer a slow painful death, from the time they were born. Please don't assume genetic research is all bad, because of a concern over abortion.

The abortion issue is a separate issue; neither Autism Speaks or the genome research project can concern themselves over how a person may use the knowledge gained by research in the future when the health and well being of children is at stake today.

There are many, like my wife and I, that could use that kind of information in a decision whether or not to have another child to avoid potential unnecessary suffering for a child coming into the world. Autism is not the only issue related to that research.

Our child had the 22Q 11 deletion syndrome, the research has found a 30 to 50% correlation with that deletion and autism. If it weren't for that research I would have never known about the correlation.

Yeah... apples to oranges. I am talking big corporate America. You into solo practice which is hardly corporate America. And the fact that you failed to integrate in a business with other people is exactly what I am talking about with respect to Aspies in general. To be on a board, you have to be able to "do" people and big business. The resumes of people on Autism Speaks are pretty impressive. I manage multi-million dollar programs across teams all over the world at a large corporation and my resume pales in comparison to many of those members. That is what I mean when ask you to name another Aspie that can integrate in corporate America. Slim pickings unless you want to have a board full of academia people and geeks. We have lots of those.

Who really needs Facebook when you have Wrong Planet and like minded people who will not judge you?

Anyway Facebook is just another blog site plus photos of lots of people you met once in your life and have on their as a reminder.