Please enjoy this wonderful BEST OF from Halloween of 2008. Tell us your own Halloween stories. How do you modify, the ups and downs.
By Nancy Hokkanen
On Halloween my son's fifth grade class had a special math project, and I volunteered to help. Six pumpkins were handed out and groups of kids were to weigh and measure them, guess the number of seeds within, and carve them into jack o'lanterns.
Our table had two parent volunteers. The other mother also brought an adorable preschool sibling – whom I referred to as "him," until told "his" name was Karen. Maybe that was why I sensed a chill from the stone tiki face at the other end of the table.
The teacher explained the pumpkin activities and I expected that we parents might model some of the cooperative behaviors he'd laid out. But it seemed not to be. I could barely establish eye contact with the other parent, much less "Hi, my name is." Social Darwinism seemed to be the order of the day.
I decided that I could not bear to see the pumpkin lid cut improperly, so I seized control of the orange globe. Following the commandments in the Pumpkin Masters bible, I cut out an angled lid with a notch, eschewing the smoke vent. I pointed out to the children that the lid was the shape of a pentagon. Thus the territorial parental pissing match had begun.
Next the students scooped out the insides. Most of the kids enjoyed it, facilitated by my Martha Stewart rubber-handled ice cream scoop and Grandpa Rayno's fish scaler. I was feeling so au courant, so in my element. After all, I was the only parent wearing a jack o'lantern T-shirt.
A calm, unarmed black professional man lying hands up, on the ground, on his back… who still was shot by a police officer.
An agitated young man with autism who’d run away from his care center, who police later said was the original target of the shooting.
A young police officer with SWAT training who’d received misinformation from 911 dispatch, whose two other shots missed their marks.
Those three men’s lives intersected against a tense societal backdrop of increasing gun violence reported in international media. Three men whose parents were relieved that their son was not killed.
The thoughts of North Miami police officer Jonathan Aledda before he fired his gun may never be fully understood. One key factor deserves examination: The citizen eyewitnesses who’d called 9/11 had misinterpreted autistic behaviors. That mistake caused lifelong trauma for all three men, and nearly resulted in the death of either or both innocent citizens.
The general public’s inability to recognize behaviors common in the growing autism community indicates that autism awareness efforts need a change.
Question: Who’s been misinforming or under-informing the public about the realities of autism?
Let’s start with mainstream media reporting, which skews toward upbeat stories of quirky kids showcasing some special talent. Depending on legislative focus, people with severe autism might be portrayed as drains on tax-funded services. Or those with autism lead the nightly news when they’ve gone missing, were found dead, or perpetrated a crime such as a fatal shooting.
The incident also spotlights (1) the need for autism awareness information that reaches all police forces and the crime-reporting public, and (2) educational content that portrays a broader representation of real-world autistic behaviors.
Kinsey, a behavior therapist, was shot once in the leg by a police officer while trying to retrieve Arnaldo Rios-Soto, a young man with autism who had run away from a group home. Police were first called to the scene by 911 callers who misinterpreted the two men’s interactions. One call described a “possible suicidal man with a gun” – yet neither man was armed, and Rios-Soto was just holding a toy truck.
One video taken before the shooting shows Kinsey, who is black, lying on the ground on his back, empty hands in the air, calmly explaining the situation to North Miami police officer Jonathan Aledda. “All he has is a toy truck. A toy truck. I am a behavioral therapist at a group home,” Kinsey told the officer.
That video does not show what Officer Aledda did next: he fired three shots, one of which hit Kinsey, who was then handcuffed and left on the ground bleeding for 20 minutes. Later from his hospital bed Kinsey recalled, “I’m saying, ‘Sir, why did you shoot me?’ and his words to me were, ‘I don’t know.’” Officer Aledda, a SWAT team member, said in his official statement, “I did what I had to do in a split second.”
Florida Congresswoman Frederica Wilson, who also is black, said seeing the video “felt like a nightmare”: “If you’re ever stopped by the police — freeze, don’t move. That’s number one on the brochure that we created... What else could we have told him? What could have saved him from being shot?”
“To say that we didn’t mean to shoot the African-American guy, we meant to shoot the guy with the disability, makes the person’s life worth nothing,” said Matthew Dietz, an attorney for the Soto family. Dietz said Rios-Soto was held almost four hours in a police car and is traumatized.
What conditions in law enforcement departments might have contributed to this seemingly inexplicable shooting?
In the corporate battles for high-stakes public health contracts, a public relations parallel exists between manufacturers of vaccines and flame retardants. Both industries continually push for mandates by leveraging mortal fear into sales. Both insist their products are completely safe, despite compelling research to the contrary – along with uncounted consumers’ reports of adverse medical events such as autism.
Last December HBO’s documentary Toxic Hot Seat detailed the controversy over flame retardant chemicals used in U.S. furniture. The filmmakers assert that corporations “obscure the risks to public health and misrepresent chemical safety data by paying 'experts' to alarm legislators and the public” – and oppose state bills to eliminate toxic flame retardants from home furnishings.
HBO’s film, inspired in part by the Chicago Tribune’s 2012 investigative series “Playing With Fire,” makes the case that profiteering via manufactured fear is skewing public health decision-making. Filmmakers and reporters both noted similarities between the PR tactics of Big Tobacco and flame retardant manufacturers, saying the latter “waged deceptive campaigns that led to the proliferation of these chemicals, which don’t even work as promised.”
(Note: Age of Autism readers familiar with the Chicago Tribune‘s autism coverage might ask whether its reporters have been pejoratively labeled by critics as “pro-fire.”)
No federal law requires furniture to be flame retardant, but for decades most U.S. manufacturers have adhered to the California flammability standard outlined in Technical Bulletin 117. The document describes flame resistance limits for upholstery fillings such as foams, beads and feathers, when exposed to ignition sources such as a lit cigarette. Flame retardants work by generating reactive or additive compounds that operate alone or as synergists, interfering with combustion, insulating fuel sources, or diluting sources of fuel or oxygen.
Chemical compounds with names like Tris (TCDP) and Firemaster 500 are part of a multi-billion-dollar international industry. According to the American Chemistry Council's North American Flame Retardant Alliance, the main uses are in electronics and electrical devices, building and construction materials, furnishings, and transportation (airplanes, trains, automobiles). Tris contains bromine, an element whose Greek name means “stench.” The U.S. Centers for Disease Control website says bromine is used as a chlorine alternative in swimming pools, though at certain concentrations it can irritate skin, mucous membranes and tissues.
Online comments by vaccine injury
denialists often seem plucked from George Orwell’s novel Animal Farm, a dystopian allegory in which “some animals are more
equal than others.” At the websites of magazines struggling to regain lost
market share, the human counterparts of porcine characters Napoleon and
Squealer can be found denying medical facts and urging others to discriminate
against the vaccine-injured population.
As soon as TV’s “The View”
announced that celebrity author Jenny McCarthy might be hired as a
co-host (now official),
corporate media and internet trolls attempted anew to devalue her in the public
eye. Years ago McCarthy stated that her son reacted adversely to the MMR
vaccine; after a bout of seizures the boy was revived by medics, and treated by
physicians over the years with positive results.
McCarthy is president of
Generation Rescue, an advocacy group started by parent volunteers to educate
families about safe and effective biomedical autism treatments. Oddly, if you
Google “Generation Rescue,” the first title to pop up is a sponsored link from
the faux research group Autism Science Foundation. On July 9 ASF reported the
groundbreaking news that “Mothers Who Have Children with ASD Show Significantly
Higher Levels of Fatigue.”
At the U.S. News & World Report site, assistant opinion editor Pat
Garofalo minced no words in his article “Keep
Jenny McCarthy’s Vaccine and Autism Pseudoscience Off ‘The View.’” Staff at
that publication have backpedaled hard from articles by former health editor
Bernadine Healy, M.D., who advocated vaccine program transparency. A former
director at the Red Cross and National Institutes of Health, Dr. Healy stated
before her 2011 passing, “There are unanswered questions about vaccine safety.
We need studies on vaccinated populations based on various schedules and doses
as well as individual patient susceptibilities that we are continuing to learn
Most commenters at The Atlantic critical of McCarthy
display a lack of scientific rigor, offering emotional opinion as if it were
axiomatic instead of providing valid independent evidence. Amongst the clichés,
fearmongering, baiting and hating was the predictable call for censorship –
ironically from a book author. Stacy Mintzer Herlihy, who with multimillionaire
vaccine industrialist Dr. Paul Offit co-wrote Your Baby’s Best Shot: Why Vaccines Are Safe and Save Lives,
declared that “[a] small subset of people are utterly immune to reason. Booing
them off the stage is a perfectly reasonable tactic.”
Another commenter, “Kfredrick72,”
wrote with chilling detachment, “And let’s face it, a tiny percentage of the
population IS adversely affected by vaccinations, not so much autism but other
complications. That in no way means we shouldn’t be using them. The benefits
clearly outweigh the risks.”
There it is – that utilitarian
public health meme designed to shut down vaccine safety discussion. But if one
pauses to think, one realizes that the stark assertion carries unpleasant
Do vaccines’ benefits outweigh risks? For people who create vaccine policy or do not question
it, the answer is yes. For those seemingly unharmed by vaccines or statistics
wonks, maybe. For the uncounted victims of vaccine adverse reactions, no.
Such inconsistency is also the
hobgoblin of vaccine policy messaging and decisionmaking:
dictionary defines risk as “possibility of loss or injury”; the definition
of safe is “free from harm or risk; unhurt.”
The CDC had the
Institute of Medicine convene a committee
to study the childhood vaccine schedule; it "expressed support
for the childhood immunization schedule as a tool to protect against
vaccine preventable diseases," yet urges further safety study… but
not a vaccinated/unvaccinated study.
The U.S. Supreme Court
has declared that vaccines are “unavoidably unsafe.”
The National Vaccine
Safety Compensation Program has paid out $2 billion in vaccine injury claims,
with 80% of cases filed thrown out.
Since 1990, the Vaccine
Adverse Event Reporting System has received over 200,000 reports.
To parents whose
child suffers from vaccine-induced autism, public health policymakers’ claims
of protecting children ring hollow. Paradoxically many parents now feel they
must protect themselves and their families from myopic and insular agency administrators
unresponsive to consumer reports of adverse reactions to vaccines.
came last fall from Dr. Marie McCormick of the Harvard School of Public Health,
who claimed that children with autism are especially in need of immunization in
order to “protect them.”
On November 2
HSPH held a forum (webcast here) entitled
“Trust In Vaccines: Why It Matters.” The event was held to discuss “the
importance of immunization, the safety of vaccines, and the consequences of
vaccine hesitancy.” Vaccines were described as a “cost-effective stalwart” and
a “target for misinformation.” (One might argue, though, that said misinformation
began with the event’s one-sided promotional description, which predictably omitted
mention of vaccines’ limitations and failures.)
One of four “expert
participants,” McCormick is a professor of maternal and child health at
Harvard. Near the forum’s end, at 56:54, an online question was read to the moderated
“With the surprising volume of science and medical evidence that shows a
large percentage of children with Autism Spectrum Disease have a range of
immune system dysfunction indicators, i.e. physiology, neurology and genetics,
can the panel comment on whether continuing investigation should look at how
vaccines may intersect to change the trajectory of ASD development, rather than
members of the panel responded with nervous laughter; they then looked to
McCormick to respond, and off she went. “I
actually think that’s asking the question the wrong way,” McCormick said. “First of all, there is no evidence that I
know of that says immunization alters anything in the expression of autism. I
just – I don’t.
On Friday, October 5 UK reporter Brian Deer gave his second
presentation at the University of Wisconsin-LaCrosse, on “Stiletto Journalism:
Busting the Vaccine Scare.” Ostensibly a primer on his coverage of the fallout
from the 1998 Lancet MMR case series of Andrew Wakefield et al., in reality the
presentation was part vanity schtick, argumentum ad hominem, and careful
Seated in the unfilled room were students given credit to
attend, and faculty positioned as if anticipating disruption. A muscular bald
man sat in front facing the crowd, rather than the podium. Dr. Thomas Pribek,
an assistant professor of English whose tweedy appearance came right out of
central casting, mentioned having Deer in class the day before. In introducing
the speaker, Pribek pontificated that stories garnering an “emotional response
dissipate in the fog” but “facts remain in the light of day.”
Perhaps advised about the threatening implication of his
chosen title, Deer stated that his use of the word “stiletto” only meant applying
great force to a narrow area; he said journalists should use narrow focus
rather than broad. The diminutive Brit claimed to have received intimidating
emails at times in his career, and he used AIDS denialists as an example of
zealotry over public health issues.
Deer announced to his audience that he had uncovered a
“secret network of businesses” that would profit from Wakefield’s actions,
including the affiliated University. All the information, he said, was “waiting
in the public domain,” and took years to unfold because “you have to wait… not
dump information.” (Later a student asked whether anyone else would ever have
uncovered the MMR/autism story; Deer replied “No.”)
In a puzzling contradiction for someone seeking credibility,
Deer quoted his aunt’s advice: “Believe nothing you hear, and hardly anything
The pejoratives and machismo began early, with Deer
describing Andrew Wakefield as “this strange person” and using intimidating
imagery – describing a scene from the movie A Bronx Tale in which a
mobster beats a Hell’s Angel. Deer took obvious delight in listing the
penalties against Wakefield onscreen and verbally, and boasted, “That was a
result of journalism.”
Displaying a 2004 photo of Wakefield and Deer, the reporter
admitted he “pursued Dr. Wakefield at Indianapolis.” To the laughter of the
audience, he animatedly asserted that Wakefield covered the camera lens and
ran, adding for humorous effect, “It was all very Edwardian.” Deer claimed
Wakefield “called on parents to boycott the MMR vaccine” and “started the
(Below is a video of parental experience at an event in protest of the Deer appearance.)
At times the balding presenter used risqué language on the
young audience, saying there are only two things he likes: “One is sex and the
other is reading my name in the newspaper.” Deer said that after the BMJ ran
its January 2011 article on Wakefield, a Harris poll showed that 145 million
Americans “knew the fundamentals of the story” and his work had “a massive
impact on public opinion.” Knowing that newspaper presses across the U.S. were
running his story, he “felt a great honor at the time.”
(On a related note, students of journalism should look up
which U.K. and U.S. newspapers once promoted a false link between Saddam
Hussein and the 9/11 World Trade Center attacks.)
Next came comments discrediting the UK parents. Onscreen
appeared a photo of Isabella Thomas and her two boys; according to Deer, who is
not a medical professional, “neither had autism… it turned out they didn’t have
it.” He said he filmed Jodie Marchant, and discussed her daughter’s digestion
problems in repulsive detail. Marchant, he said, had made allegations against a
doctor and a nurse; he noted without a touch of irony, “You can’t broadcast
anybody’s unsupported allegations against anybody.”
Then Deer moved from parents to professionals. Dr. Richard
Halvorson was maligned for selling single vaccines. Journalist Lucy Johnston
was criticized for writing articles that provided Wakefield’s point of view
(along with quotes from another MMR researcher, Dr. Vijendra Singh). Again,
Deer seemed unaware of the self-incriminating implications when he proffered,
“Newspaper [reporters] believe they have to climb on board and become public
(Editor's note: Please welcome Nancy Hokkanen as Age of Autism's newest Contributing Editor. An astute observer and wonderful writer, she lives in Minnesota with her husband and their much-loved 14-year-old son. For ten years she has volunteered for several autism advocacy groups, co-moderates a biomedical treatment listserv, and was recently appointed to the Canary Party executive board.)
By Nancy Hokkanen
Ten years ago my son received the diagnosis of autism. At age four his future was uncertain, so for years I felt that I needed to be his voice. But nowadays I ask his permission regarding what I write or say about him publicly. Here, for example.
To my great relief, my son can now speak and write for himself. Unlike so many other kids on the autism spectrum, my son is verbal. Sometimes too verbal, invective-wise. He’s taken a novel-writing class. Hey, he can use “de facto” in a sentence.
I say this not to boast, but to share hope with others wondering what their child might achieve some day. My son’s expressive language skills developed in part from biomedical treatments, speech therapy, educational TV, and hour-long phone conversations with peers about video games. And let’s not forget YouTube!
As Hokkanen the Younger grows physically, academically and psychologically, so too grows his desire for independence. Like others his age he wants to make his own choices – a laudable goal. But what if he doesn’t realize that those choices could hurt him? I’ve spent 14 years protecting my son from falls and choking and bugs and bad weather. I’ve also sheltered him from people who don’t understand autism, and from those who use the issue for selfish purposes.
The truth is, I can’t protect my son forever. Sometimes we autism parents must decide to let our kids learn from their own mistakes… but of course, only to a point. Obviously someone who’s more mentally challenged or has oppositional defiant disorder will need very firm guidance for safety protection. Parents’ knowledge of their children’s individual affects and limits is a static and priceless commodity.
Recently I consciously decided to let my son get his first uncomfortable sunburn. Before he left home to go swimming with a friend’s family, his father and I had wanted to apply sunscreen to his pale Nordic skin, like always. He refused. We ordered him to let us apply sunscreen. He refused. A ritual of parental caring had just become a personal civil rights issue.
I considered our options:
Telling him “Go to your room” is actually a reward.
To him, limiting screen time constitutes cruel and inhuman punishment.
He’s taller than me, but I have the tactical weight advantage.
My son argued his case. “I just want to have the experience so I’ve learned my lesson and I won’t do it again,” he told me. “I understand that some experiences are ones that I can’t do again. Like jumping off a cliff.”
Telling the lad he couldn’t go swimming seemed an overreaction, so I analyzed the conditions and variables involved in swimming without sunscreen. The TV weather report said the day’s UV rating was low. Dad and I estimated the amount of time he’d actually be in the pool and decided that, even with water reflection, any potential sunburn to nose and shoulders would not be dangerous or particularly painful… just uncomfortable. My husband and I had grown up without benefit of sunscreen, had gotten sunburned many times and survived, but back in those prehistoric times Planet Earth had a thicker ozone layer.