OPINIONS

Another perspective on Autism Speaks

Recently, there was an article written in The Daily (“Autism, allyship and Autism Speaks,” May 27, 2014) that was critical of Autism Speaks, the Stanford Autism Walk and the newly approved Autism Speaks U Stanford chapter. I am the brother of a 16-year-old on the Autism Spectrum and the founder of those efforts here at Stanford, and I believe that the article deserves a response.

My intentions are not to criticize the author of that article, as she is entitled to her own opinions. But I believe that the presentation, in many ways, distorts the true accomplishments of Autism Speaks.

Autism Speaks has invested more than $200 million in innovative research that has led to great progress in uncovering some of the mysteries of autism. It has also assisted in continuously decreasing the possible age of autism diagnosis, finding risk factors for autism and identifying genes involved with the disorder. In progress right now is the largest comprehensive genome-sequencing project in history, in which Autism Speaks will map the genomes of 10,000 people with autism to serve as a database for scientific study into diagnosis and personalized treatment for individuals on the Autism Spectrum.

Apart from research, Autism Speaks has also played a key role in the dramatic increase in autism awareness in the world via its Walk Now for Autism Speaks events – held in close to one hundred cities across North America and involving more than 340,000 walkers – between 2012 and 2013; its Light It Up Blue campaign on World Autism Awareness Day, in which over 8,400 buildings, landmarks and communities participated across all seven continents in 2013; and its advertising campaigns. Its Family Services Committee has also created toolkits to assist parents with everything from everyday tasks, such as brushing one’s teeth, to major life adjustments, such as the first hundred days after an autism diagnosis, the transition from adolescence to adulthood and finding employment. Finally, Autism Speaks has helped pass Autism Insurance Reform Bills in thirty-seven states, requiring these states to cover a portion of each family’s treatment expenses. For more information, go to www.autismspeaks.org.

Despite all its accomplishments, Autism Speaks receives criticism from certain self-advocates, and I would like to dispel some of the common criticisms. The author of “Autism, allyship, and Autism Speaks” claims that Autism Speaks spends more money on fundraising than family services. Yes, it does. However, Autism Speaks will be spending an unbelievable $8 million on family services this year, and it could never do that without its successful fundraising efforts. Furthermore, its Walk Now campaign is characterized as a fundraising expense when it, in fact, serves many critical goals, such as creating awareness, acceptance and a sense of community for families. Comparing fundraising expenses to the family services budget is a misdirection. No other organization has made such a significant commitment to providing assistance to families dealing with autism.

Another argument is that Autism Speaks has no representatives with autism on any senior or advisory board. However, there are individuals with autism on the Family Services Committee (where they can have the most direct impact on the lives of those on the Autism Spectrum and the families), as well as the many others involved within the organization. The Autism Speaks website does not state in these contributors’ descriptions that they have autism, since autism does not define these individuals or their contributions to their respective committees or positions. In addition, the Board of Directors is made up mostly of family members of individuals with autism, who see the challenges of those on the Spectrum firsthand every day and work hard to fulfill their goal of changing the future for all those affected by autism.

Finally comes the argument that most Autistics don’t want a cure for autism. I think we can all agree that we need further support for individuals with autism to help each person maximize their strengths and to create opportunities for those on the Spectrum. So where does the striving for a cure come from? To begin with, children with autism are three and a half times more likely to suffer from severe gastrointestinal issues. In addition, the Spectrum includes individuals who are non-verbal, often become too stimulated to fall asleep and in some cases cause harm to themselves and others around them. Therapies and medications can cost tens or even hundreds of thousands of dollars per year, and many with autism will never live on their own or hold a job.

I am not arguing that everyone should be in favor of a cure or that we should spend all of our research dollars on searching for a cure. Instead, I hope that everyone can understand why many parents want to relieve their children’s symptoms. Each individual with autism and their family has a different experience, and some cases are far more debilitating than others. Few individuals with autism are able to gain admission to Stanford, live independently and write an article for the Daily. Instead, most have significant challenges that can affect their ability to communicate, make friends, live independently and procure employment. I think it is unfair for the author to act as if she speaks for all, or most, of those with autism.

As a community, we must come together with our common goals: to educate Stanford students about autism, to create a sense of community at Stanford for those with autism or with family members on the Autism Spectrum and to raise vital funds for research, awareness, family services and advocacy. I hope that you all will join me in my mission to better support the autism community.

 

Spencer Savitz ’17

Contact Spencer Savitz at ssavitz@stanford.edu.

  • ccdaddy

    Auti$m $peaks, was created by GE / NBC to control research and to stir it away from vaccines. In particular, the product they GE have investments in the mercury based preservative Thimerosal. Question, why if NBC’s ceo Bob Wrights grandson Christian
    gets better and starts talking after 1st round of chelation. Why did AS, not invest in chelation therapy? Why after Christian’s Gut problem gets better, after using a protocol created by Dr. Wakefield did Bob Wright stand by and let everyone destroy Dr.
    Wakefield???? Why did Katy Wright, Christian’s mother leave AS? And has been very vocal, about AS wasting research funds. By doing, only Genetic studies. Thus leaving,
    what she and her parents had decided, caused Christians Autism (VACCINES) unfunded.

    Why is it, that the chief science officer of AS, always comes from big Pharma. Think about it, will someone that has pushed vaccines all their life, ever go against their former employer??? NO!

    A.S. pays adsorbent amounts in salaries, to all who work in their posh 1 million dollar a yr.rent in Manhattan headquarters.

    Why has there been almost no research, in the area of chelation and Gastro? The very medical treatments, that improved the quality of life of their grandson Christian?????

    It was NBC’s ceo Bob Wright, that said that he started AS because of what had taken his grandson Christian. So, what made him decide, to not allow all the other children that have Autism. To not get the life changing treatments that his own grandson was given??????

    His stock in GE,that was invested in Thimerosal, would have plummeted. If it ever came out, that the vaccine preservative and other vaccines ingredients were causing the US. children to succumb to Autism.

  • ccdaddy

    It’s been 2 months, since the CDC whistle blower has come forward and has brought the revelation that the CDC has been busy. But not where it counts,you see they have been busy cooking the books. So why has AS, not bothered reporting to the Autism community,
    that the CDC has been creating science out of thin air ? If they really care, one would think
    that they would be outraged,at such allegations. After all, their own grandsons life was destroyed by such incompetence,one would think that NBC CEO Bob Wright would be livid.
    So, why has A.S. been completely silent,, about such a monumental screw up?

  • ccdaddy

    CDC Whistle Blower Dr. William Thompson ” I have a boss, who’s asking me to lie ”

    CDC WB Thompson ” The CDC is so Paralyzed, by anything related to Autism ” He goes on to say, that the CDC is not going to do what needs to be done. Because, the CDC is to afraid of finding a an association, to vaccines causing Autism.

    Does that, really sound like that this should be our A team, finding the cause of Autism?

    Maybe, to a fool.

    They appear to be a bit shady, as my daughter would say. Not shady, corrupt to the very core of their being! There is, an incestuous relationship, with a revolving door into the very industry, that they once (regulated) policed. When that door is slammed shut, and there is policy’s in place, that take away the incentive to sell out the public. Then, and only then, will you ever get a handle on health care! This Nation, needs to go back to the law, that prohibited Pharma from advertising direct to the public. That’s when the Media, abandoned the American people, for Pharma advertisement dollars.

    That number’s, in the hundreds of millions, in block buster drug commercials.

    According to the CDC WB Thompson, he has suggested, that the US. Congress needs to intervene concerning Vaccine safety and Autism. That suggest, that Dr. Thompson has lost his confidence, in their ability to stop or even slow this raging epidemic. With a no confidence vote, from Dr. Thompson. One would really think, that our Congress would take vaccine safety, from someone that has been proven to be this corrupt & incompetent.

    You do not get a handle on health care, when all your public health officials, are as corrupt as organized crime. Selling out this Nation people, appears to be a favorite
    pass time for them.

  • ccdaddy

    From the Simpson wood minutes,when they met to decide about a whole generation as an acceptable loss.
    Dr. Verstraeten: Page 40: “…we have found statistically significant relationships between the exposures and outcomes for these different exposures and outcomes. First, for two months of age, an unspecified developmental delay, which has its own specific ICD9 code. Exposure at three months of age, Tics. Exposure at six months of age, an attention deficit disorder. Exposure at one, three and six months of age, language and speech delays which are two separate ICD9 codes. Exposure at one, three and six months of age, the entire category of neurodevelopmental delays, which includes all of these plus a number of other disorders.”
    Dr. Verstraeten: Page 42: “But one thing that is for sure, there is certainly an under-ascertainment of all of these because some of the children are just not old enough to be diagnosed. So the crude incidence rates are probably much lower that what you would expect because the cohort is still very young.”

    Dr. Weil: Page 75: “I think that what you are saying is in term of chronic exposure. I think that the alternative scenario is that this is repeated acute exposures, and like many repeated acute exposures, if you consider a dose of 25 micrograms on one day, then you are above threshold. At least we think you are, and then you do that over and over to a series of neurons where the toxic effect may be the same set of neurons or the same set of neurologic processes, it is conceivable that the more mercury you get, the more effect you are going to get.”

    Dr. Weil: Page 207: ” The number of dose related relationships are linear and statistically significant. You can play with this all you want. They are linear. They are statistically significant. The positive relationships are those that one might expect from the Faroe Islands studies. They are also related to those data we do have on experimental animal data and similar to the neurodevelopmental tox data on other substances, so that I think you can’t accept that this is out of the ordinary. It isn’t out of the ordinary. The Seychelles Island studies and somebody said the Faeroe Islands studies both, were chronic exposures. We are not talking necessarily about chronic exposure. We are talking about a series of acute exposures and at one point in time that exposure is much greater on one day than any of the Seychelles Islands. The increased incidence of neurobehavioral problems in children in the past few decades is probably real. I work in the school system where my effort is entirely in special education and I have to say that the number of kids getting help in special education is growing nationally and state by state at a rate we have not seen before.

    Dr. Weil: Page 208: “The rise in the frequency of neurobehavioral disorders whether it is ascertainment or real, is not too bad. It is much too graphic. We don’t see that kind of genetic change in 30 years.”

    Dr. Johnston: Page 16 comments made in reference to a prior meeting on thimerosal “As an aside, we found cultural differences between vaccinologist and environmental health people in that many of us in the vaccine arena have never thought about uncertainty factors before. We tend to be relatively concrete in our thinking. Probably one of the big cultural events, at least for me, was when Dr. Clarkson repetitively pointed out to us that we just didn’t get it about uncertainty (factors), and he was actually quite right.”

    Dr. Johnston: Page 20: Referring to the mixture of both aluminum and mercury in vaccines.there is absolutely no data including animal data, about the potential for synergy, additivity or antagonism, all of which can occur in binary metal mixtures that relate and allow us to draw any conclusions from the simultaneous exposure to these two salts in vaccines.”

    Simpson Wood meeting. And this says it all, it is straight from the SW transcripts.
    [ verbatim ]

    Dr. Brent page 229 Simpson wood meeting transcripts. The ones that were removed, before sharing them with their own committee. That’s right, they removed all of the bad findings, and then. They, sent it to their own committee.

    If an allegation was made that a child’s neuro-behavioral findings were caused by Thimerosal containing vaccines, you could readily find a junk scientist who would support the claim with “a reasonable degree of certainty”. But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true. So we are in a bad position from the standpoint of defending any lawsuits if they were initiated and I am concerned.”

    Reading that again, we find their chief concern, was not for the children they were charged with protecting. No! it was for the expected coming lawsuit’s, if they were initiated, and by gosh he was concerned.

    “so we are all, in a bad position from the standpoint of defending any lawsuits, if they were initiated and I am concerned.”

    He appears to be saying, that the science is not!!!! on their side. And, they would suffer loss! With, the current science that’s available.

    That’s the same feeling you get, when you read the FOIA email from the CDC saying ” the IOM meeting is in weeks, we have searched frantically and cannot find anything here, were going to have to go elsewhere and get us a study” Long story short,they chose Denmark, that Nations children got 90% less mercury than US. children. That’s like, comparing apples to cows, but as you will soon learn. The CDC, was wanting to stay as far away from the truth, as they could. In fact, in a CDC generated FOIA email the CDC is stating to Poul Thorsen. The lead researcher,that the CDC gave 11 million dollars to. The Denmark researcher, that the CDC told that they were only interested in what will exonerate the CDC and vaccines. Here, is another bit of New’s, that really should have been BREAKING NEWS! here in the land of the freedom of the press.

    Extra Extra, read all about it,the researcher that gave the CDC all the proof that vaccines containing mercury was not only safe. But also good for the developing brain ‘and further more, it also protects children from Autism. He has been indicted, on 22 ct’s of FRAUD! But, you did not read that article did you. Here is the kicker,this Denmark researcher, that allegedly stole almost 2 million dollars of CDC Autism research funds.
    He bought a house, next to the CDC whom he stole from, in Atlanta GA.. 2 cars and a Harley Davidson motorcycle, and then wired himself almost 1 million dollars in Autism CDC research funds. Here is a hint, it was more of a payment for service rendered,than a theft. The Atlanta GA. grand jury, said that he Poul was working with others known and unknown by this grand jury. Known, those in Denmark that Poul was creating science out of thin air with. And the Unknown, those at the CDC, that in the beginning were only interested in what would keep them from paying for their part in the destruction of a generation of American children.

    Why would the CDC need to order the IOM to not find causation! if the science is favoring rejection???

    Here is further proof, that they had very flawed scientific evidence. So flawed, their answer was, to hide it from the FOIA the Congress and the Courts.

    In August 2002, a VSD meeting was held in Denver Co. one of the presentations which was attached, has to do with the VSD team website security. One of the power point slides,states the following.

    ” protecting scientific information, from the FOIA ,Congress,and Courts”

    If their science, is so overwhelming against the parents. Why, are they having to protect it. From the Congress, & the Courts??????

    From the, Freedom Of Information Act = FOIA, Congress, and the US.Courts? It also says this. (“Is the website any less secure than emails,paper copies? It can’t be shredded.)

    This behavior,is not defend-able! It is however, prosecute-able.

  • ccdaddy

    This is TRUTH! This is why, if you suffered with low school grades,because of ADD ADHD this is about those who were responsible. And then, decided to hide it and blame the very parents genes that they destroyed their children. You do not get, any more evil that that.

    http://www.ageofautism.com/201