Saturday, July 20, 2019

Autistic History: Autism Speaks

The first in this blog series is Autism Speaks. This is the most popular and well known charity but yet the most toxic. I do not agree with anything written in this post. I am stating the history and why they made my boycott list.

 History

It was founded by Bob Wright in Febuary of 2005. He was the Vice Chairman of General Electric. He formed this organization soon after his grandson was diagnosed.

In 2005, Bernie Marcus, the Co-Founder of Home Depot, donated $25 Million to launch Autism Speaks. He has been on the board ever since.

In January of 2008 a child clinical psychologist named Geraldine Dawson PhD became Autism Speak's chief science officer.

In April 2010, it named Yoko Ono its first "global autism ambassador."

Since forming the organization, they have merged with three other autism organizations. They did this in order to raise millions of dollars in autism research.

Starting in 2009, they used Wubzy from the televison show "Wow! Wow! Wubzy!"

On May 1, 2015 Bob Wright resigned as chairman. Brian Kelly gladly took over. He was previously the chairman for audit and family services for the organization. Bob Wright is on the board as a co founder.

Co-founder, Suzzanne Wright took a leave of absense in November 2015 when she was diagnosed with pancreatic cancer. She passed away on July 29, 2016.

In 2016, Autism Speaks raised $47.5 million. This was an 18% drop from the previous year. They attributted the drop in revenue to changes in funding to thier MSSNG research program and declines in walk participation.

Functions of Autism Speaks

Autism Speaks is an organization that has been a source of funding to find the cause and treatments. They had curing autism as part of their mission statement until 2016. They made a press release stating they were moving away from that. I did not believe this and neither did most of the Autistic community.

Research

Autism speaks have raised public awareness for research, raised funds for research, and lobbied Congress.

The main areas of research Autism Speaks funds are:
  • Etiology includes genetic and environmental factors that may cause autism. This research includes searches for autism susceptibility genes, animal models for autism, environmental toxins, and maternal viral infections.
  • Biology studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below.
  • Diagnosis includes epidemiology, early diagnosis, and biomarkers.
  • Autism therapies include medication, behavioral (IE ABA), and psychological interventions. It includes treatments for co-occurring medical conditions in children which are unrelated to autism, such as sleep disorders and gastrointestinal disorders that may hinder behavioral interventions, along with treatments for older individuals, and complimentary and alternative medicine (quack treatments). 
Autism Speaks funds the Autism Genetic Resource Exchange. This is a DNA registry of genotype of phenotype information that is available to autism researchers world wide. AGRE was established in the 1990's by an organization called Cure Autism Now.

Autism Speaks also funds the Autism Tissue Program. It is a network of researchers who manage and distribute brain tissues. It is said that these tissues are rare and vital to autism research for the cause.

Autism Speaks supports the Clinical Trials Network. It's primary focus is new pharmacological treatments. They also support the Toddler Treatment Network. They develop new interventions for toddlers.

Since 2014, Google has partnered with Autism Speaks in a project called MSSNG. It is pronounced "missing." It was previously called Autism Speaks 10k Genome Program. This is an open source research platform to collect and study DNA of 10,000 families that have autistic family members. Thier goal is to create a data base of sequenced genomic information of autism which would be run on Google's genome cloud based genome data base, Google Genomics. In December 2014, they announced they would permit world wide access to the research for further genome analysis.

Awareness

The walk for Autism research program holds a walk annually. This is held on Long Island, NY. In 2006 they raised $2 million.  They have over 20,000 participants and raise.

The Ad Council launched a campaign highlighting the importance of early detection.

In Feburary 2005, The Today Show aired a week long series highlighting autism research and treatment.

Autism Speaks sponsors Autism Every Day.

In December of 2007, Susanne Wright me twith Sheikha Moza of Qatar to pressure the country to sponsor a United Nations Resolution recognizing "World Autism Awareness Day." They introduced the resolution and it was passed and adopted without a vote by the United Nations General Assembly, primarily as a supplement to previous United Nations initiatives to improve human rights.

Wright helped launch Autism Speaks Light it up Blue campaign and the annual Focus on Autism Event.

Light it Up Blue

It is observed every year on April 2nd. It is dedicated to raising awareness of autism. It is associated with Autism Speaks and it is intended to raise international awareness of autism in support of World Autism Awareness Day and Autism Awareness Month in the United States. The blue stands for mostly affecting boys, which is false. Girls normally fell through the cracks because it presents differently.

Landmarks all over the world participate. On April 2nd, 2010 the third annual Autism Awareness Day was celebrated at the New York Stock Exchange where Autism Speaks volunteers and supporters opened the day by ringing the NYSE opening bell.

In 2011, the White House declined to light it up blue but in 2017 Donald Trump did fulfull the promise made to Suzanne Wright and participated that year.

The View of Autism as a Disease

Autism Speaks advocacy has been based on the belief that autism is a disease. In January of 2008, an autistic blogger was very upset with this portrayal. They created a critical parody website called "Getting the truth out." It was later taken down in response to legal demands from Autism Speaks to stop using its name and logo without permission. They said it could confuse people looking for information about autism. New parody sites were later created by Gareth Nelson, founder of Aspies for Freedom.

In September of 2009, Autism Speaks launched the commercial called "I am Autism."

Steve Silberman (author of Neurotribes) wrote an editorial in the Los Angeles Times criticizing the organization. In response to this, the president at the time, Liz Feld, stated that one third of autistic people also have a seizure disorder , half suffer serious digestive complications, 50 percent elope and more than 30 percent are non verbal. She also discussed Autism Speaks legal achievements in providing families more financial assistance and funding.

Position on Vaccines

Autism Speaks previously had a high priority research into the now discredited claim that vaccines cause autism.

Allison Singer, the senior executive of Autism Speaks, resigned in January of 2009 in order to not vote to commit money to new studies on autism and vaccines. She had previously voted against this. There are numerous scientific studies that disprove it and they need to move on.

In March of 2010, they said it would not completely abandon the idea that vaccines could cause autism and that it would support research to determine whether subsets of individuals might be at an increased risk.

In August of 2014, Autism Speaks said "We strongly encourage parents to have thier children vaccinated for protection against serious disease. We recognize that some parents still have concerns about vaccines, particularly if they have a child or relative with autism. We urge them to find a health practitiioner that will help them ensure the well being of their child."

In 2017 Autism Speaks said that each family has a unique experience with an autism diagnosis, and for some of it corresponds with the timing of their child's vaccinations. At the same time, scientists have conducted extensive research over the last two decades to determine whether there is any link between childhood vaccines and autism. The results of this research is clear. Vaccines do not cause autism.

Financial Spending:

In 2009, Disability Scoop questioned Autism Speaks about its chief science officer, Geri Dawson, who received $669,751 in compensation in 2008, including $269,721 to relocate her family from Washington to North Carolina. Autism Speaks responded that Dawson's compensation was mid-range for executives with similar positions in the nonprofit health sector, and that Dawson's move benefited Autism Speaks because she would be more accessible to its offices, science divisions, government health agencies in Washington, D.C., and her new position at the University of North Carolina at Chapel Hill  Compared to other autism-focused nonprofit organizations, Autism Speaks spends a smaller percentage of its revenue on furthering its mission. According to a report by The Daily Beast, 70.9% of Autism Speaks's revenue is devoted to directly furthering its mission, compared to 79.8% of Autistics Self-Advocacy Network's revenue and 91.5% of Autism Science Foundation's revenue.
In 2012, Autism Speaks spent $2,252,334 on compensation for current officers, directors, trustees, and key employees, which The Daily Beast portrayed as controversial. Autism Speaks's former president Mark Roithmayr had a salary of $436,314 in 2012, and Chief Science Officer Geraldine Dawson earned $465,671.
In 2016, Autism Speaks spent $2,375,591 on officers, directors, trustees, and key employees, including $110,000 of bonus incentive compensation. Autism Speaks paid a $336,843 severance payment  to Robert King, a $175,000 severance payment to John Gruber, and a $123,171 severance payment to Elizabeth Feld

Next Post on why they made the boycott list will be on Home Depot since they and Autism Speaks are connected. 

 

Source: https://en.wikipedia.org/wiki/Autism_Speaks
www.internationalbadassactivistis.org
personal experience with the organization

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