Welcome - Words Win Wars

Greetings! It gives me great pleasure to welcome you. Our new website follows and extends the curve of our founding principles: Parents are, and must remain the driving force of our community, the stakes are too high and the issues too sacred to delegate to outside interests.

The AutismOne conference has always been a conversation of hope recognizing “none of us is smarter than all of us,” while encouraging and embracing independent thought – but, once a year in Chicago is not enough. The conversation needs your thoughts, ideas, and experiences year round.

I will be blogging often and welcome getting to know you better. I have a lot on my mind. It has been a ferocious year for our family.

There are so many answers and so much to write about I am going to take a step back and begin with a post I wrote in 2005. It is truer than ever today and provides me with a logical entry point to begin my conversation.

Words Win Wars

-- “To write or speak is to communicate. To communicate is to share meanings, make them ‘common’ to all participants in the discourse. (The etymological root of communication means ‘common.’)” – Robin Lakoff

Why do mass media, mainstream medicine, federal agencies, along with the U.S. Congress and countless others refuse to honestly analyze the evidence that points to a possible autism-mercury connection? Why do the same groups discount, out-of-hand, recovered children?

What we are witnessing and are actively engaged in is a struggle of utmost importance now and for the future. The context question is: Who speaks for autism? Who defines autism? Who are our meaning-makers?

Frames offers a tool to help our community analyze and better understand what we are up against, while providing possible strategies to pursue.

In the early twentieth century, academicians began taking a deeper look at language. J. L. Austin (1911 – 1960) developed much of the current theory of speech acts (a speech act is best described as, "in saying something, we do something," for instance a minister says, "I now pronounce you husband and wife").

In the 1970s cognitive theorists drawing on the work of Austin and other linguistic philosophers developed the concept of frames as another way of looking at how language and experience affect each other, that is, where a frame is “a structure of expectation.” More formally a frame is “a body of knowledge that is evoked in order to provide an inferential base for the understanding of an utterance.” (Levinson 1983)

Frames are “restaurants,” “classrooms,” or “autism.” Each frame brings certain types of utterances that we recognize based upon our recognition we are operating in certain frames.

According to Dr. Robin Lakoff “The common sense of an idea is determined by its fit within a frame currently accepted by a majority of influential people. Once an idea becomes common sense, included in a generally accepted frame, it becomes very resistant to change. Other ideas accrete around it, lending it credibility and making its abandonment even more disturbing.”

Frames are the “glue” holding cultures together. They are the hidden assumptions in every communication. When frames shift or participants do not agree on the frames involved in interactions, communication breaks down and tensions increase. When frames shift abruptly people feel a sense of hopelessness.

Frames and Exnomination
Individuals’ frames come into focus as they develop and respond to clues and expectations of a culture. The frames help provide cues to move from one frame to the next. What may be acceptable in a restaurant may not be in a church.

According to Professor George Lakoff, “Language always comes with what is called ‘framing.’ Every word is defined relative to a conceptual framework.”

The creation of frames is not a purely innocent process of accretion over time as words become associated with certain frames. Groups often unconsciously attempt to create frames.

By far the most dangerous and manipulative creation of frames involves exnomination. Exnomination is the way in which dominant social groups avoid identification when creating frames. There are no fingerprints so to speak.

Exnomination is where culture is declared synonymous with nature, where inevitability is assumed, where there is no need to contest, where normality is a given. Exnomination is the purposeful failure to name one's own class or political position when speaking from a position. It is an invisible hand of “purpose.”

Exnominated groups are normalized. They just are. Their rules are the rules. Their norms are experienced as the evident laws of a natural order. Exnominated groups marginalize opposing ideas from their exnominated positions.

Successful Framing
Professor George Lakoff states, “Conservatives have spent decades defining their ideas, carefully choosing the language with which to present them, and building an infrastructure to communicate them. Their work has paid off: by dictating the terms of national debate, conservatives have put progressives firmly on the defensive.”

“Conservative think tanks,” according to Lakoff, “have framed virtually every issue from their perspective. They have put a huge amount of money into creating the language for their worldview and getting it out there. Progressives have done virtually nothing.”

Furthermore, Lakoff contends, “conservatives are better at framing the issues because they've put billions of dollars into it. Over the last 30 years their think tanks have made a heavy investment in ideas and in language. In 1970, [Supreme Court Justice] Lewis Powell wrote a fateful memo to the National Chamber of Commerce saying that all of our best students are becoming anti-business because of the Vietnam War, and that we needed to do something about it. Powell's agenda included getting wealthy conservatives to set up professorships, setting up institutes on and off campus where intellectuals would write books from a conservative business perspective, and setting up think tanks. He outlined the whole thing in 1970. They set up the Heritage Foundation in 1973, and the Manhattan Institute after that. [There are many others, including the American Enterprise Institute and the Hoover Institute at Stanford, which date from the 1940s.]”

Definitions and Marked Groups
We have known for decades definition is not a neutral act, but may be used with the explicit idea of giving more power and legitimacy to those who already have enough to control the connection between word and definition.

Definitions have always been the means by which we construct and analyze reality. As J. L. Austin points out, "Language is equivalent to action." According to Dr. Robin Lakoff, “The struggle to define words and create frames is in large measure a struggle over much of our reality. Since so much of our cognitive capacity is achieved via language, control of language – the determination of what words mean, who can use what language to what effect in which settings – is power.”

As previously discussed, exnominated ideas take on the idea of “neutral” or “status quo.” Robin Lakoff says, “They (exnominated groups) don’t have to make the case that their side is reasonable, or socially responsible, or normal: that’s a given. But the other side has to argue that change – the move away from the familiar and the comfortable, out of frame and toward the marked, is worth the cognitive and social fragmentation that it necessarily entails; a much more difficult argument to make because it forces participants to venture onto unfamiliar and shifting ground.”

Exnominated Attacks
Exnominated groups deny subordinate classes or gender positions or interests of their own. Exnominated positions are self-serving and are not grounded in a greater good. When challenged, exnominated groups cannot turn up the light, so they turn up the heat (attack).

One might think that groups who do not wish to be identified would refrain from personal attacks, but the construction and control of narratives requires marginalizing opponents -- while serving as a reminder to those who would be foolish enough to question the sovereignty of the status quo. (The continued attacks against Dr. Wakefield are examples.)

Their power relies on established frames of public acceptance with ready access to bully pulpits to smear opponents. A favorite tactic of exnominated groups to repulse potential supporters of marked groups is to describe marked groups with words that depict physically unpleasant characteristics, for example, by using words such as “shrill,” “strident,” and “whine.” When a group is described as such readers, feel a subliminal need to put space between themselves and the awful noise, to distance themselves from marked groups. (“Desperate” is the favorite exnominated adjective when attacking the autism community. “Desperate” isn’t a characteristic meant to instill feelings of competence; “desperate” is a quality meant to evoke thoughts of “reckless” and “extreme.”)

Another favorite exnominated tactic is to suggest marked groups are self-pitying, all-blaming, victim-loving wannabes who would like nothing better than to join the cult of victimization. Denying marked groups their authentic grievances by painting them as self-styled victims minimizes real issues, and again distances potential supporters who shy away from self-suffering “spectacles.”

By continued rhetorical attacks exnominated groups invoke the idea that their (us) ideas are neutral and apolitical, those others’ (them) dangerous and political. Laffe states “That assumption is reinforced by a vocabulary that the program of the other side (marked groups) is divisive and hostile to us (exnominated groups).” (This is used with great drama and effect by the status quo when suggesting that autism groups, in the search for potential causes, would be responsible for any future epidemics of diseases for which vaccines currently exist, due to potentially undermining the public’s confidence in the vaccine program.)

The Future
Lakoff states, “The continued belief in the old presuppositions and the discourse options they permit is possible so long as exnomination is not recognized, and especially so long as it is not contested. But the language war is being fought over just these issues: who must be named, who can choose whose names and what meanings. The demand that the exnominate ‘neutrals’ acknowledge their active role and political status goes along with the ability of formerly speechless groups to demand that their own language choices be accorded equal status with the conventional ones. The fact that the official namers are themselves no longer invisible, exnominated, or unnamed means that their linguistic activities are no longer normal or unmarked. Those activities can now be commented on and criticized. They no longer define our cultural frames unilaterally and uncontroversally.”

The continued outing of exnominated groups must continue. David Kirby’s Evidence of Harm made great headway in naming names. Generation Rescue’s foray into one of the inner sanctums (the status quo saying that children cannot recover and purporting only a genetic etiology) directly brought the fight to one of our leading opponents.

Continuous outing of the FDA, CDC, IOM, AAP, and AMA is crucial. They are not agenda-less agencies. They are exnominated groups attempting to claim absolute authority in scientific debates by creating frames (think Danish studies) and offering circular definitions of autism. The more that is known and circulated about individuals within theses organizations, their financial ties to Big Pharma, early careers, mentors and allies -- the more able the autism community will be to expose the falsehood of neutrality surrounding their claims.

Think tanks and their relationship with special interest groups need to be more fully examined and exposed. By and large, think tanks are among the most exnominated groups. They do not like publicity. They prefer to award grants and scholarships and to silently sway public opinion. They often employ staffs of so-called experts to write articles fed to local and national media outlets.

Here are some of the currently active exnominated frames and their destructive linguistic intent:
Trace amounts – a feel-good word used devoid of scientific merit vis-à-vis harmful amounts
Vaccines are safe – presume an absolute position of safety
Desperate parents – disparage parents’ ability to think objectively
Supposed epidemic – challenge the increase in autism
Anecdotal evidence – denigrate empirical findings, including recovered children
Danish studies – continually cite the mantra of “objective” science
Questioning vaccines is irresponsible – cast doubt on the integrity of parents
Neurological disorder – define autism in a fashion that stifles scientific investigation
Epidemiological studies – drive an agenda of statistical absolutism
Parents are litigation happy – question the motive of parents
Frivolous lawsuits – deflect the legitimacy of our children’s injuries
Genetic research – promise answers in 30 years
Look how many children vaccines have saved – muddy the waters, pretend this is the issue
Lawsuits drive pharma companies out of business – quote illogical economic models, instill fear in public
Vaccines and onset of regressive autism – define as coincidental, paint evidence is highly subjective
Thimerosal the good mercury – condemn methyl mercury as bad, give ethyl mercury a clean bill of health
Lack of evidence linking mercury to autism – deny the great number of peer-reviewed scientific studies

Articles in support of each of the above-mentioned frames have been published (by exnominated members). Their frames are used in various written and spoken combinations, along with other manufactured frames to convince the public of their “objectivity.” Articles written by exnominated authors are regularly distributed to the widest possible audience advancing their fallacious sound bites for mass consumption and acceptance.

Each frame, however, is firmly rooted in the agenda to turn semantics into pragmatics, negate valid claims, divert attention, protect the status quo, and funnel revenue into questionable studies. And above all else the frames are meant to marginalize you.

The goal of exnominated groups is to speak for autism, define autism, be the autism meaning-makers, and in doing so control all aspects of autism from funding to diagnosis to treatment.

As you read this, armies of specialists are busily engaged in the creation of frames and manipulation of language: image consultants, media advisors, press secretaries, spokespersons, spin doctors, PR experts, federal agency lawyers, public health authorities, think tank advocates, Big Pharma apologists, and medical organization pundits. They are preparing barrages of glossy thought-pieces to send to every media outlet.

It will not be enough. Each day exnominated frames become more transparent.

The New York Times believes our community was a potent national force in 2005. In 2006 we will achieve greater success. Independent streams of thought and inquiry are converging.

Led by networking autism groups, other communities will begin accepting there are common causes among diseases. Recognizing there is family of related injuries (ADHD, asthma, Alzheimer’s, diabetes, and others) caused by mercury poisoning will provide an overarching vision and lead to greater cooperation among the various communities.

Independent researchers will continue to discover mercury’s harmful effects on biomedical pathways, while establishing neurotoxic thresholds and conducting clinical studies to support these emerging hypotheses.

Anecdotal evidence will continue to mount. More recovered children, less diagnosed cases.

Courageous reporting such as the Age of Autism will continue. The article Deadly Immunity by Robert F. Kennedy Jr. will vitalize further investigative reporting.

Legislatively we will begin to mold the politics of autism. Neurotypical siblings of children with autism are coming of age to vote. Our community continues to grow. Parents are considering elective office. Action on the state level will continue, reaping tangible benefits. Upcoming rallies in D.C. will bring into sharp relief those who speak for our children and those who don’t. Autism groups will mobilize and coordinate efforts at the federal level. The passing of Liz Birt, one of our champions will help galvanize other parents to join the fight.

The Internet will hum and buzz with fury as determined parents share information, organize fundraisers, win allies, convince skeptics, post articles, promote promising leads, develop original analytical methods, and amplify the urgency of our message. Parent-driven organizations will be more nimble and stronger.

Our frames (biomedical treatments, recovery, vaccine injury, environmental insults) will gain traction. Public sentiment will begin to recognize recovery and underlying causes of autism. A common sense view of autism (children unable to detoxify a variety of neurotoxins, including pre- and postnatal insults) will increasingly be in disagreement with exnominated frames.

In the widening gulf exnominated groups will desperately cling to their frames (think tobacco executives) as the public and science abandons them. There will be no deus ex machina to save this exnominated ideology. The exnominated groups picked a fight they cannot win.

Parents are the ones who speak for autism, define autism, are our meaning-makers. Parents are the only ones with the moral authority to do so. The tyranny of language masquerading as action and the reign of usurpers of meaning are coming to an end. Parents will frame the future.

Each parent should take great comfort and feel a sense of pride in their contributions and accomplishments in 2005. In a collective way each parent’s involvement - from advocate to witness - strengthens us all. Each of you is a hero. Rejecting deceptive frames takes courage. Your courage provides the autism community its foundation. With a solid foundation built on first principles we greet 2006 with strength and an unwavering commitment to all our children. Thank you for making it possible.

Thanks Ed (and Teri too)

Oh, if only we were not having to fight against the same exnominated frames you wrote about in 2005. And yet I see progress every day as we grow stronger and more unified. Ed, you and Teri deserve the endless gratitude of all of us. The hard work you do all year, culminating in that week-long reunion we have, has done as much as anything to create a true community. But the conference is but an outward and visible sign of that community. Thanks for bringing us to the next logical step in making Autism One a year-round part of our lives.