June 8, 2007

Questioning The Plan of Autism Speaks

Since Autism Speaks is coming under such close examination, I thought I would bring to you the keen observation of an anonymous poster on the Evidence of Harm List.

He is the one who wrote the AS 990 report.

The question asked here is simple, "what is the plan of Autism Speaks".

They are raising tons of cash. They are spending none of it on treating children. They are spending none of it on helping adults. Autistic adults are not even allowed to speak at their events. They are drying up all the donations for the smaller groups that are treating and providing services. They are spending millions on infrastructure.

AS has the dubious distinction of being so universally disliked in the autism community that they bring together two groups that are butting heads constantly, the biomed parents trying to cure their children of ASD and the Neurodiversity movement that says ASD is an alternate and equal cognition and should not be cured. The opposing clans have seem to only two things in common, they love people with autism and they hate Autism Speaks.

With all this going on, we need to answer this question right quick.

The question is answered on the AS web site by:
Dr. Gary Goldstein
President, Kennedy Krieger Institute
Clinical Scientific Advisor, Autism Speaks
In an article entitled:
Dr. Gary Goldstein discusses the current focus of autism research and the urgent need to conduct long-range clinical trials.
("Urgent" need for "long-range" trials? Is that like "hurry up and wait"?)

Analysis of Dr. Goldstein's comments:
So what is AS's real plan?

Its not treatment.
Its not working with other autism groups.
Its not providing services.
what is going on?

The answer is found on their web site. Gary Goldstein of John Hopkins is the Medical Director is the real power and the gatekeeper the money. He gives a lot of it to himself and his friends. The plan is ONE BILLION DOLLARS over the next FEW YEARS.

Now does everyone understand what is going on. The research institutions have their own foundation.

So what are Gary's plans? - read about them below quoted from the AS web site.

SUMMARY: He says that TREATMENT will only begin AFTER the research is completed - hundreds of millions of dollars and after years and years.

From Gary Goldstein - Medical Director of Autism Speaks:
"But there needs to be a huge national campaign directed toward the general public.

Hundreds of millions of dollars each year. This is what Autism Speaks is capable of doing. They have the seed money to launch a general campaign. Again, this requires a lot of money-you need advertising, media, public relations.

As I said before, getting these clinical trials going is incredibly expensive. But these clinical trials are imperative-only then will we be able to compare results and develop appropriate treatments.

Another effect will be the ability to get money from drug companies."

His new $3 million autism database is to have parents sign up for NON TREATMENT research. Unwittingly thousands of families with a child with autism are signing up!!! Most of them believe they are going to have treatment.


He then goes on to discuss the human trials that Kennedy Kreiger, Dr. Goldstein's institution, has done on children in the past:
Human Trials - is this a good idea? Is it SAFE? Will it help real children?

A national magazine recently wrote a article summarizing HOW human trials are done by John Hopkins. An exerpt is as follows:

"What Hughes (a mother of a lead toxic boy being studied) - and more than a hundred other low-income, predominantly African- American families from Baltimore who were also recruited - didn't know was that the kids would be used as guinea pigs in study so shocking that the Maryland Court of Appeals later compared it to both Nazi experiments at Buchenwald and the notorious 40-year-long Tuskegee study in which poor lack men were allowed to die of untreated syphilis. In August 2001 the court accused Kennedy Kreiger (John Hopkins) of deliberately encouraging inner-city landlords to rent lead-contaminated buildings to families with children under age four"the group most vulnerable to lead poisoning, since little kids often put paint chips or house dust in their mouths. Yet the consent form never mentioned the terrible risks of this toxin: stunted growth, nervous-system damage, impaired hearing, mental retardation, even death."

I could not find the link to that article, but I found this quote in a NYT article:
"Dr, Gary Goldstein, the chief executive of Kennedy Krieger, defended the study and the institute's record in treating and preventing lead poisoning in the poor neighborhoods of Baltimore."

Read the whole thing.

The NYT article and several others the unethical study can be found here.

[UPDATE: One commenter understood this section to mean that I was implying that AS was involved with studies that ignored safety guidelines. I want to be sure that no one else gets that impression. AS is IN NO WAY implicated in the Baltimore lead study and did not even exist at the time. My concern is that KKI who did the study, is getting the bulk of AS's money and Dr. Goldstein, who defended the lead study, heads the AS board and is dispensing the money to his own institution, KKI.]


We have hundreds of thousands of sick children and adults who require treatment and services, each one of which will require an estimated $15 million dollars worth of care over their lifetime. The autism rate is estimated to be growing at %12 per year and now is 1 in 150 according to the CDC.

And the Autism Speaks solution seems to be this:

Vacuum up all available donations, skim a healthy chunk off the top for lavish salaries and expenses, hand the rest to Gary Goldberg (defender of unethical studies on poor children) so that he can hand it to his own institution to build a three million dollar database and do long term genetic studies that not improve the life quality of even one of the hundreds of thousands struggling with autism, but which will either fail to find the gene, wasting millions, or succeed in finding a gene (which they now believe to actually be a confluence of hundreds of genes), giving people the option of "curing" autism by killing their unborn child who MIGHT develop autism eventually.

Autism Speaks has the power to do immense good. Right now they are doing immense harm.

I really hope they are listening.

I know I have been downright brutal to AS this week, but I think the criticism is fair and deserves a response by AS.

UPDATE: Be sure to read the comments section as I have added some information about AS spending decisions.


Unknown said...

You have been downright brutal to Autism Speaks this week. Fair? I don't think so.

Autism Speaks has raised awareness immeasurably. And it is raising money for research. Any research must meet ethical and safety guidelines that is a given. But the idea that research supported by Autism Speaks does not or will not meet those guidelines is not supported by any facts or evidence.

It is just more Autism Speaks bashing, a popular sport in the Neurodiversity movement, but not so popular with parents who actually are trying to improve the lives of our autistic loved ones.

Ginger Taylor said...

If I gave the impression that AS was not following safety guidelines, I am very sorry.

I am not making that accusation at all that at all. Thanks for pointing out the potential for confusion.

I made a note in the article to be sure no one else got that impression.

AS was not involved in the KKI Baltimore lead study, in fact they did not exist at the time.

What I am pointing out is that AS's board is headed by the man who heads KKI and who defended the study. Not only is this a conflict of interest, but it calls Dr. Goldberg's judgment into question.

You will get no argument from me that AS has not done a good job of raising awareness. They have. But at this point, everyone is aware. It is past time to move on to getting help to autistics NOW.

Presenting only half the truth is still lying. AS is letting everyone know that autism is pervasive, that it is difficult, but not that it is treatable now, today. That is a huge piece of the puzzle to leave out. Withholding information about the DAN protocol, that many of them believe works, from affected families who look to them for guidance IS NOT ETHICAL!

How do I know that they believe in DAN? Because they took their own autistic children to DAN docs and paid for it with their own money. And guess what? Their kids improved!! Peter Bell reportedly did it with his son, and the Wrights have admitted to spending more than $100,000 on their grand son for biomed treatment. Finding a potential cure for cancer and then keeping it to your self, especially when you have the resources to confirm it, refine it, and distribute it is beyond horrible, and approaches evil!

AS took in more than 33 Million in their first two years. They can afford 100 thousand for a good chelation study. For 4 million they could put a professional lobbyist in every state capitol to advocate for laws to serve and protect those with autism, and what happed in South Carolina last week and NY two months ago could be happening all over the country!

Instead they spent more than 5.5 Million on special events like celebrity golf tournies, concerts and theater galas that ended in a NET LOSS OF $173.360.00 in 2006!

AS needs to start addressing these concerns and answering questions. Autism in a national health crisis and if they plan to raise ‘hundreds of millions’ per year, they sure as hell better be putting it to good use for our kids. They are not doing that now.

I would argue that this is not bashing. I know that I am getting emotional at this point, as I look back and see lots of exclamation marks in my comment, but that does not make my line of inquiry illegitimate. I am raising serious and important questions that need to be discussed before AS is allowed to become the only voice of autism and collect and distribute all available private funds.

Impugning my motives will not make the accusations and questions go away.

If you are someone who believes in AS, and from the big banner on your blog, I assume you do, get them to start offering answers. As you know, parents of autistic children are a special breed and they will not sit quietly by and watch this go on for long.

I am an example. Up until last week, I had reservations about AS, but I was pulling for them. I heard about Christian’s first visit to a DAN doc back in 2005, and didn’t write about it so that the family could have him treated and come to their own conclusions about biomed with out coming under public scrutiny during the process. That was allowed to happen, Christian got better, Katie (who was resistant for a year after his diagnosis) became convinced, and AS has been witness to it all. It is time for them to give an account as to why they are not supporting research into the treatments that are working for their own children.

As always, I am absolutely open to correction. If I am getting something wrong, point it out and I will be happy to apologize and correct the record.

I am accusing AS of not being teachable. I do not want to be guilty of that myself.

Unknown said...

I do not "believe" in Autism Speaks. I very much appreciate their effort and results in raising autism awareness and funds for research.

I have an 11 year old son who has classic Autism Disorder with profound developmental delays. MY awareness is fine. It is the politicians and other government leaders and the people who put therm in office generally who STILL need to be reached.

And we still need research into causality and treatment, desperately. Autism Speaks is the best vehicle in the world right now to address those needs.

Anonymous said...


I am right with you on the state level lobbying work that AS could be

I have great respect for all the parent lobbyists out there, and I've
done some of it myself, but let me tell you this: until very recently
I worked in corporate America for a very large company with lobbying
power akin to that which we see in the pharma industry. I had the
ability to not only influence virtually every piece of state
legislation that impacted my industry, most of the time I actually was
able to draft it. The effort on my part to accomplish this in many
cases was minimal. Our rationale for crafting language in a certain
way was always completely self-interested, and the arguments bolstering
our positions were often weak, sometimes extremely so.

Now take autism--wow, talk about having compelling arguments to fund
treatment and resources (!)--and yet it has been unbelievably difficult
to even get legislative interest in this, much less get anything
accomplished. I have performed exactly the same lobbying work for
autism causes as I did in my corporate job, with a huge disparity in
results, and I believe part of the difference is that I don't now have
a huge, powerful corporate monolith behind me.

Whether we like it or not, money and power talk and AS has them. They
need to use them to get state legislation passed--NOW. Insurance
mandates should be job #1, and no allowance for bs like huge
exemptions, unreasonable policy limits, exorbitant deductibles, etc.
(the devil is all in the details here and the insurance industry will
try to stop legislation first, and then emasculate it as a fallback

Jenna Lane Smith, Esq.