Tag Archive: Autism Speaks


In answer to this question, No.

Whilst they were sapping money from anyone gullible enough to invest in them and researching and creating a noise about vaccines causing Autism, as wrong and as silly as this was, there were some on the spectrum who waved it off in saying “Let them chase their tail futilely until they get bored.  It can’t hurt us.”

Now they have been stockpiling genetic material on Autism. They have been given a new and strong direction from Geraldine Dawson (who years before their inception and even whilst they were chasing their tails in the Vaccine debate) formerly director of the University of Washington’s Autism Center and a psychology professor who headed a team to make early genetic research into the causes of Autism back in 2002.

http://uwnews.org/article.asp?Search=dawson&articleid=2497
Families with two or more children with autism sought for $10.2 million study of genetic, neurobiological causes of autism

The National Institute of Child Health and Human Development, one of the National Institutes of Health, is funding the study, which is also designed to develop intervention programs to assist children with the development disorder. Geraldine Dawson, director of the UW’s Autism Center and a psychology professor, heads the interdisciplinary team of researchers.

Autism Speak’s has bought on someone competent and with seemingly the respect and direction of her other scientific researchers in Autism Speaks.

So now they have purpose and direction and powerful support and researchers on the right track in establishing what Autism is and is not and the source (in genetics).

Is this a good thing? No. Autism Speaks is a worry and make no mistake

I have noted that they are having many executives with experience in institutions dealing with Birth defects and early detection of infantile and prenatal disorders. Further to this was the statement of Geraldine Dawson saying that they have been able to diagnose Autism in children at around the age of 2, and have hopes to diagnose at an earlier age. How early?

http://appropriations.senate.gov/ht-labor.cfm?method=hearings.view&id=d54201cd-50d4-4687-8274-e9781f0ef0d7

Autism Treatment Network and the Clinical Trials Network. Early detection and early behavioral intervention. Two areas in which we have made significant progress in the past several years are early diagnosis and early intervention. Screening methods for autism now exist for children as young as 18 months of age, and the American Academy of Pediatrics now recommends that all babies be screened for early signs of autism at 18 and 24 months of age. Autism Speaks and the NIH are funding several studies focused on detecting autism in even younger infants

Now. Let’s put together what we know as laymen.

They are looking at Autism diagnosis earlier than two years. They have
been stockpiling genetic tissue of Autistic people

http://www.eurekalert.org/pub_releases/2009-10/as-asg100709.php

New York, NY (October 7, 2009) – Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and the Autism Tissue Program (ATP) continue to play an integral role in continuing genetic research and new findings in the complex autism inheritance and causation puzzle. In a study published in the October 7, edition of the journal Nature, an extensive research team of more than 75 research institutions identified semaphoring 5A, a gene implicated in the growth of neurons to form proper contacts and connections with other neurons. Previous studies have reported lower levels of this protein in blood samples from individuals with autism as compared to controls. In this study, the researchers were also able to extend that observation to the brain tissue of individuals with autism vs. control” brains.

And they have many people in the executive with central roles in areas that specialised in early and prenatal detection.

IF they could detect genetically the possible predisposition of the unborn child to being on the Autism spectrum they COULD tell the expectant parents. (Just like they do with children with possible/suspected Down’s Syndrome).

Now IF the pregnancy is terminated, they will NOT be responsible for it. If babies are going to be terminated before birth to the extent they are in comparison with Down Syndrome babies, then Autism rates may drop from 1 in 155 to maybe 1 in every 3100. Those autistic children that do get born can be medicated with the potions from their friends in Pharmaceutical from that they are paid for patenting from results of their genetic research.

Here grab some popcorn and have a look.

I hope you had a strong stomach.
Here is where they “staged” the whole clip.

http://www.autismspeaks.org/inthenews/autism_video_project.php

Oh here is a second course

Just in case you thought I was overstating the whole “distancing themselves thing” or the legal disclaimers to the videos they launch and promote…here we go

http://www.autismspeaks.org/docs/video/Autism_Speaks_release.pdf

 

Now consider this

http://www.genocidewatch.org/aboutgenocide/8stagesofgenocide.html

This DOES sound rather radical and fearmongering BUT….

1. CLASSIFICATION: All cultures have categories to distinguish people into “us and them” by ethnicity, race, religion, or nationality: German and Jew, Hutu and Tutsi.

2. SYMBOLIZATION: We give names or other symbols to the classifications. We name people “Jews” or “Gypsies”, or distinguish them by colors or dress; and apply the symbols to members of groups. Classification and symbolization are universally human and do not necessarily result in genocide unless they lead to the next stage, dehumanization.

3. DEHUMANIZATION: One group denies the humanity of the other group. Members of it are equated with animals, vermin, insects or diseases. Dehumanization overcomes the normal human revulsion against murder.

4. ORGANIZATION: Genocide is always organized, usually by the state, often using militias to provide deniability of state responsibility

5. POLARIZATION: Extremists drive the groups apart. Hate groups broadcast polarizing propaganda. Laws may forbid intermarriage or social interaction.

6. PREPARATION: Victims are identified and separated out because of their ethnic or religious identity. Death lists are drawn up. Members of victim groups are forced to wear identifying symbols.

7. EXTERMINATION: begins, and quickly becomes the mass killing legally called “genocide.” It is “extermination” to the killers because they do not believe their victims to be fully human. When it is sponsored by the state, the armed forces often work with militias to do the killing.

8. DENIAL is the eighth stage that always follows a genocide. It is among the surest indicators of further genocidal massacres. The perpetrators of genocide dig up the mass graves, burn the bodies, try to cover up the evidence and intimidate the witnesses. They deny that they committed any crimes, and often blame what happened on the victims. They block investigations of the crimes, and continue to govern until driven from power by force, when they flee into exile.

Autism Speaks has the ear of people in very high places.

The founders of Autism Speak(s the Wright’s) got a commendation from the Pope?

We see the money shoveled to their organisation from BIG corporate organisations and more from government funding – effectively drying up other autism charities, we can presume them to be a little worrying if their image of Autism is damaging.
The videos show nothing less than dehumanistion of Autistic people?

The genetic stockpiling does lead you to question how it may be used by parties related to such dehumanising mindsets. Identification?

Are they state funded? Look at their success in PR and receiving funds and support in government.
Do they have any people on the spectrum in their organisation, in positions of genuine power to help moderate things that are against the rights of Autistic people?

Are they extremist? Look at the videos again.

Are you frightened? I am.

Bloke

The late George Carlin said that “Death is caused by swallowing small amounts of saliva over a long period of time”. Hysterical. We know it is a joke. We know the cause is unlikely at best, but ultimately unprovable no matter how absurd.

The vaccine theory is the same. We may well say the same about the causes of Autism. Autism Speaks and Generation Rescue may have blamed car pollutants, The increase in ultravoilet rays, fluoride in the drinking water or any other number of causes and all would have been equally as absurd and unprovable. They focus (or have focussed) on vaccines as “the cause”. More fool them.
They will also say that Autism is an epidemic because there weren’t Autistic people around prior to a particular date. This pet theory is backed by their strange “proof” of asking us to point out diagnosed Autistic people born earlier that 1930 and pointing to the amount of diagnosed cases today.
Does not take a science or a psychiatry degree to appreciate that public and medical fraternity’s knowledge and identification of Autism has been increasing over the last half of a century and previously people with this condition were not diagnosed with Autism as the public and medical fraternity simply did not have “that” label.

There is an old adage about whether a tree falling in a forest with no-one around makes a sound. Of course it does but who would notice?
So what does Autism Speaks (who purport to be a charity for Autistic people – and indeed “Speak” for Autistic people) and Generation Rescue choose to promote Autistic people.

I hope you had a strong stomach.
Here is where they “staged” the whole clip.

http://www.autismspeaks.org/inthenews/autism_video_project.php

Oh here is a second course

So You probably are thinking that they are a big organisation with good intents and though they obviously put themselves over rather poorly have a track record for making big money grants and use it wisely for Autistic people?

Hmmm…..OK. So according to the 2008 annual report that they made public (Now taken down) they recieved US$66,373,252 and spent US$71,095,217 (What is the technical term for backwardisation?)

Head of the list was Geri Dawson, was compensated $644,274 but between the top 15 employees salaries they made $3,065,732 between them. All up they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes. Compare this to grants to individuals and communities totaling $66,670.
They stage and make cool videos though huh?

OK so if you are thinking that they seem to have strange ideas, have no idea on how to spend the overly generous donations from a trusting public and perhaps that they are not really representing Autism then what is Autism if not some robbing demonic possessor of “normal kids to be cure by the zealous and fanatical Autism Speaks and Generation Rescue bad publicity machine?

Here is the Wikipedia scoop on Autism

“Autism is a disorder of neural development that is characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old.[1] Autism involves many parts of the brain; how this occurs is not well understood.[2] The two other autism spectrum disorders (ASD) are Aspergers syndrome, which lacks delays in cognitive development and language, and PDD-NOS, diagnosed when full criteria for the other two disorders are not met.[3]

Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by rare mutations, or by rare combinations of common genetic variants.[4] In rare cases, autism is strongly associated with agents that cause birth defects.[5] Controversies surround other proposed environmental causes, such as heavy metals, pesticides or childhood vaccines;[6] the vaccine hypotheses are biologically implausible and lack convincing scientific evidence.[7] The prevalence of ASD is about 6 per 1,000 people (1 per 166), with about four times as many males as females. The number of people known to have autism has increased dramatically since the 1980s, partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.[8]…..”

So if the actual brains of Autistic people is neurologically different on a structural level then do you think it makes sense that a “cure” would rearrange or change a person’s brain structure and leave them un-Autistic and with different brains? Don’t laugh most of the Autistic Speaks and Generation Rescue publicity machine think exactly this. They think of Autism as a sort of demonic possession of their normal children who are hiding behind an Autistic shell.

The true irony of course is that the demonising, devaluing and marginalising and the monster or demon allusions is scarily similar in my mind at least to the line taken with Witches (Medieval conspiracy theory) and who were the targets? Think on the weird, unsocial, outcasts who spoke and acted strangely. They were called witches but I wonder if they were diagnosed now…..

They get away with such horrid bigotry and discrimination in the guise of giving a damn. Take their I am Autism and replace the word “Autism” with “Black”, “Gay”, “Jewish”, “Intellectually disabled” …..no honestly, try it and see what I mean.

This website sums up the disgust I and many feel wonderfully

http://www.disabled-world.com/editorials/autism-speaks.php

“Elizabeth Emken is the Vice President of Government Relations for Autism Speaks, according to their web site. She joined Autism Speaks in March of 2007 and manages the relationship between Autism Speaks and the federal government, state governments and additional agencies. Elizabeth has been a leader of community advocacy for the, ‘Combating Autism Act of 2006, on behalf of Cure Autism Now, Autism Speaks, and seventeen additional autism organizations. The Combating Autism Act of 2006 passed in December of 2006,
authorizing nearly a billion dollars over a five year period of time to, ‘combat,’ autism through research, early detection, screening, and early intervention
Mark Roithmayr is the the President of Autism Speaks. Over a twenty-month period he assisted in the merging of ACRE, NAAR, and Cure Autism Now into what is currently Autism Speaks. Autism Speaks itself is the largest autism-related non-profit health care agency in America; they raised over $69 million dollars for autism research, awareness, advocacy and family services. Mark Roithmayr worked for the March of Dimes Birth Defect Foundation for twenty years prior to becoming the President of Autism Speaks
the NCBDDD runs campaigns aimed at improving awareness of developmental disabilities among parents and physicians, and promotes state efforts to ensure early developmental screening. Compared to the cuts suffered by many programs in this year’s appropriations bills, the NCBDDD’s autism programs fared well, receiving an increase of $427,000 over last year’s funding level, for a total of $15.3 million.” http://www.autismspeaks.org/government_affairs/legislation.php

From this depiction of Autism and People with Autism, the organization, ‘Autism Speaks,’ would have people believe that People with Autism are plague-carriers. Autism Speaks likens People with Autism to family-destroying, misery-creating, hope-crushing, woe-enhancing, sleep-depriving, marriage-killing monsters. Autism Speaks presents People with Autism as being an instant ride to bankruptcy.

Not since reading about Nazi Germany have I seen such an outright negative portrayal of People with Disabilities. The fact that Autism Speaks is *supposed* to be supportive of People with Autism makes me absolutely shudder with disgust. I am not alone where this dismay at an organization that declares itself to be promoters of Autism and People with Autism yet presents such a hateful and destructive message is concerned:

Autism Speaks, through the presentation of, ‘I Am Autism,’ has changed their entire demeanor towards People with Autism, their family members and friends. Instead of placing value on people with autism, Autism Speaks has presented them as some kind of horrifying monsters, loose in society and bent on destruction. Autism Speaks wields immense amounts of money and power, with the ability to sway massive numbers of people in societies across the planet in relation to Autism. They are not using these abilities to the benefit of People with Autism.”

Can say I am feeling that comforted by the knowledge that people with such strong influence and power in relation to Autism and backed by a high paid Scientist and towing the devaluing Autistics line ought to have come from high positions in organisations involved in screening pre-borns for birth defect and early detection screening (as Mark and Elizabeth were). To me the next logical step in this is Eugenics.  Scary word and scary concept and not really overly support of Autistics….certainly not speaking for them.

So why do parents fall for the snake oil promises of Autism Speaks and Generation Rescue,  and their reprehensible propaganda?

Because parents make a decision to be a parent. Part of what they agree to is to be the best parent they can be. They do this in a firm belief that their children grow and develop a certain way and thus they have a base expectation for them and their own future and belief their children’s growth and achievements will honour them as parents.

Sometimes things happen. Their children may be born with a terminal condition, or they may miscarry, be stillborn, be mentally retarded, be deformed, be something which flies in the face of this vague idea of what they expected of life of being a parent.

In most cases they will not have a particular reason to pin it on and they will grieve and they will come to accept there is no blame and things in life do happen – even things such as the aforementioned and they will get over their grief and anger and learn to move on..

Autism Speaks and Generation Rescue, in the case of Autism, comes along and says “It is not just chance and it is not yours to grieve, accept and move from. Autism is an add-on that you had thrust onto your child by villains. Autism is a monster that inhibits and hides your child. People are responsible for this. Bad people. Be very angry. Be very strong. We are all powerful and will find the soon – no idea when though – cure and we have the best minds search a cure and the best minds bringing the people responsible to justice. We want to give you your dreams back.”

It is a bad ruse, nasty, praying on the minds of those that are most vulnerable.

Autism Speaks and Generation Rescue do not value nor speak for Autistics. It will value the Autistic person once they are free of Autism but does not value Autistics and is not worth your money nor support nor well wishings.

Want more information on Autism Speaks? Check out http://notautismspeaks.tk/?

From Bloke

Autism Speaks by its name and by its clearly evident success has positioned itself as the most powerful non-profit organisation in Autistic affairs.

On the face of it this could be seen as commendable (and indeed it is a strength they use very well). They are happy styling themselves as spokespeople in Autistic affairs and management. They are in effect holding themselves out to the world as the mouth-piece of all people on the spectrum.

As their star rises spectacularly and they encroach evermore into new grounds of Autistic Affairs, unchecked and unquestioned, with all the righteousness, fanaticism and zealousness of the Knight Crusaders into the Holy Lands (or at least that is the images it brings glaringly to my mind), a sombre thought crosses my mind.

Whilst I may look for words to express my sense of wrong, of inappropriateness and impropriatiety, I found in a friend, words to express it far better than I. This is what she recently wrote to me in discusing this very topic.

“A very simple notion came to me today. We didn’t ask any of these organisations to handle our affairs, they have not sought a mandate to handle our affairs, and, as adults, we do not seem to derive any discernable benefit from them handling our affairs.

(It is possible Autism Speaks cannot produce one single Autistic who has asked them to speak for him/her)

We do not owe them any gratitude or respect…the boot is on the other foot…they need to seek our permission to speak in our name, and owe us apologies for every time they have obstructed our lives by getting it wrong.

Autism belongs to we the autistic, whether we like it or not…without a clear voluntary mandate from us, anyone else is just an uninvited tourist.

…and $60 million US is an unseemly amount of money to be mysteriously garnered and deployed in our name (without showing account of source or destination) by an uninvited tourist…”

It is true.

There is not the respect nor the sense of even pretense to wanting to work with the people on the spectrum who may have a voice. It is arrogant to my thinking.

I see no respect in this:

Nor this

I do see demonising a condition. I do see a want to condemn and malign the individual for what they are inherently. They have Autism. They are Autistic. When they demonise Autism they slap the face of everyone on the spectrum. They do it whilst staging clever videos and spreading fear into the hearts of parents of children with Autism and using clever PR, Media and political machinations.

In all of this they are successful. They dominate where they encroach. Slowly but surely they become not a voice, not a strong voice but the dominant voice which controls dialogue and ultimately censors and controls all those not holding THEIR view of what Autism is.

So one day they may ultimately be the voice of Autism by which all dialogue is filtered through or dismissed for worthwhile discussion. Whilst it may be a sad day when it happens, why should it matter? I am certainly too old and too far removed from them to personally be affected by whatever changes they make. My son? Maybe he too.

But their effect on the Autistic community in general in the present and the future more than scares me and i feel a driving need to do or say something. Why?

Well with that I remember another passage written by someone else. It is a chilling little piece of prose, from a German Pastor,Pastor Martin Niemöller

They came first for the Communists,
and I didn’t speak up because I wasn’t a Communist.

Then they came for the trade unionists,
and I didn’t speak up because I wasn’t a trade unionist.

Then they came for the Jews,
and I didn’t speak up because I wasn’t a Jew.

Then they came for me
and by that time no one was left to speak up.

This echoes in my mind with their every video and every announcement and every action. It is more than a little disconcerting.

From Bloke

OK we expect that an organisation purporting to act in the best interests of Autistic people, has an idea about Autism, and what their focus is on to improve the lives of Autistic people. We further presume that it would be a united front.

Here is the problem though when it comes to Autism Speaks. From the days of their inception, their focus was mainly on biomedical research, and specifically, vaccines purported effect on Autism.
This has been used as a fear-mongering tactic to parents with Autism to get them support, according to Dr London who left Autism Speaks controversially http://autism.about.com/b/2009/07/01/second-resignation-from-autism-speaks-reflects-concerns-over-vaccine-related-research.htm

Dr London states “.the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.”

This was not the first resignation on similar grounds. Alison Singer left the board for similar reasons as cited here
http://www.newsweek.com/2009/01/15/this-question-has-been-asked-and-answered.html

So the court ruling in which science had once and for all put the subject to bed, at least according to Andy Shih (Vice President of Scientific Affairs at Autism Speaks),  http://edition.cnn.com/2008/HEALTH/09/03/measles.autism/index.html is the new position on vaccines as causal or contributing factors?

They surely are in one agreement on this very basic fact, right?

Yes! (Andy Shih): “We don’t know exactly what causes autism, but the prevailing theory is that there’s a genetic predisposition — and we know from twin studies that this genetic component is significant — and there are likely to be environmental factors. Unfortunately, we’re just not sure what the environmental factors are.” http://www.revolutionhealth.com/conditions/mental-behavioral-health/autism/just-diagnosed/tips-shih

No! Mark Rothimayr Autism Speaks President says “We know there’s a genetic predisposition, we know there are environmental triggers. The history of autism science is like where cancer science was 40 years ago — it needs to catch up. We need better diagnosis, we need better treatment.”

OK so that was a Yes or a No or that we are not so sure? I know! Ask the Chief Science Officer at Autism Speaks – Geraldine Dawson!

“In a prepared interview posted on the Autism Speaks Web site, the group’s chief science officer, Dr. Geri Dawson, says that scientific studies have found no link between thimerosal, a mercury preservative used in certain vaccines, and autism. Nor have they found a connection between the measles-mumps-rubella vaccine and autism.

“So … given what the scientific literature tells us today,” she says, “there is no evidence that thimerosal or the MMR vaccine cause autism” and “evidence does not support the theory that vaccines are causing an autism epidemic.”

Read more: http://www.post-gazette.com/pg/09228/991232-114.stm#ixzz11K1KiKJQ

OK that is a Yes.

What about this business with the Executive Vice president of Autism Speaks – Peter Bell?

http://scienceblogs.com/insolence/2009/02/david_kirby_and_autism_speaks_sittin_in.php

That is a definite no and looks a little underhanded by any reading.

So considering the fact that the organisation is having huge investment of money and has taken the mantle of the most powerful Autism charity in the world…why is there the division of opinion on such a basic issue at such a high level? It looks very much like opinions differ from person to person and that they simply do not agree and are not working together. If they are not working together as a unified group than honestly how can anyone believe or suggest that they are able to work collectively for Autistic people or those that care for Autistic people?

My contention by how I view this, is they simply can’t. By direct extension, they aren’t now.

From Bloke