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.

NOW DOES IT MAKE SENSE?

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:
http://www.google.com/search?hl=en&safe=off&q=john+hopkins+penthouse+lead&btnG=Search

"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.]

So....

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.