By Natalie Palumbo
I am 19, a freshman in college, and the only sibling to an older brother with low verbal autism. For months, I had been following the heartbreaking story of Avonte Oquendo, a 14-year-old boy with non-verbal autism who went missing on October 4th, 2013. Avonte was wandering unattended in the halls of his school in Queens, New York, and went out a side door and vanished into the city. The idea that a child could be so vulnerable while in the “care” of his school is horrifying. Avonte was lost, non-verbal, and no one could find him. I could only imagine his family’s anguish when weeks of searching turned into months. I felt their agony that this could and should have been prevented. Avonte should not have been alone.
When I first heard about Avonte Oquendo, I immediately thought of my older brother, Anthony. He is 23 and has low verbal autism. He cannot live independently. I will be his caregiver when my parents are no longer able. I think about my future all the time, and my promise to care for Anthony. My concerns about keeping Anthony safe can overwhelm me. For families like mine, the thought of your loved one wandering alone and unable to communicate is our worst nightmare. That fear makes me reluctant to trust Anthony’s care to anyone outside my family.
Wandering behavior is the impulsive running or walking away from social and physical boundaries to aimlessly explore. It is a common trait for people with low and non-verbal autism, and a crippling fear for families. The escape risk is so great for some, they prefer to remain at home. Some children with autism will even wander away from trusted adults or guardians. Many of these stories end in tragedy. People with autism can be fascinated by water, and drowning is a terrifying possibility. Even those that can swim may be overwhelmed by fatigue, the elements, or unable to cry for help. It’s even worse to think that because these individuals are unable to report crimes or abuse, they are easy prey.
For months, I followed the story of Avonte’s disappearance with my heart in my throat. Every passing day, I became more afraid and heartbroken for his family. My sadness got worse when I learned Avonte had an older brother, Daniel. I put myself in his place. I can’t even imagine the terror his brother must have felt worrying about Avonte. The thought of Anthony missing filled me with unimaginable pain. In December, I shared my sibling perspective in an article hoping to spread awareness and help for Avonte. I thought about what Avonte’s family was going through over the holidays, and it humbled me. I was grateful to spend time with Anthony, and it made me hope to see Avonte home with his family soon. So many volunteers and autism families spent the holidays wishing the same thing.
On January 17, 2014, I saw an article entitled, “Police Investigate Whether Human Remains Found in Queens are Missing Autistic Teen Avonte Oquendo”. I tried not to cry in class. Human remains and clothes matching Avonte’s were found near the East River. It had been three months since Avonte had disappeared. The police continued searching for evidence for several more days. I felt heartbroken for this family as they awaited DNA tests. When they proved the remains were Avonte, I was devastated. I could only imagine their grief.
So many people volunteered hoping to bring Avonte’s family good news. After DNA results brought a tragic end to Avonte’s story, the tremendous outpouring of grief began. Web pages devoted to organizing volunteers became memorial pages. People from everywhere wrote poems, created art pieces, and sent notes of consolation to Avonte’s family. I mixed one of my sky photographs with an image of Avonte, and wrote words of concern for all the people that came together to help. This easily could have been a story about my brother, and that reality frightened me.
By Anne Dachel
Read Anne's commentary and view the links after the jump.
The daily media update is sponsored by:
Mar 10, New York Magazine: The Right’s Favorite Mainstream Benghazi Reporter Resigns From CBS|
Mar 10, ABC News: Parents Reach Son With Autism Through Disney Movies
Mar 10, 2014 Huffington: 5 Things Everyone Should Know About Autism | Emmanuelle Assor
In a recent Age of Autism article called "CNN Runs Scared from the Truth About Andrew Wakefield" I drew attention to the way CNN blog editors hid behind a Wikipedia article while re-circulating the customary lies and distortions about Andrew Wakefield noting:
The Wiki entry on Andrew Wakefield has a pharmaceutical Praetorian guard surrounding it preventing it from ever being corrected, and plainly CNN realised that they were on to a loser if this discussion continued.
The consultation goes up to the March 21 for any AoA readers interested in submitting their views, however beyond acknowledging the existence of the problem it is unlikely to change much. In the case of the Wakefield entry AoA correspondent ‘Aussie Dad’ reported :
I just posted the following after the first paragraph of the Andrew Wakefield Wikipedia page:
"The Wiki entry on Andrew Wakefield has a pharmaceutical Praetorian guard surrounding it preventing it from ever being corrected."
Pleased to say it lasted about 20 seconds.
The following was the response that came up:
By Anne Dachel
Read Anne's commentary and view the links after the jump.
The daily media update is sponsored by:
Mar 10, 2014, Sioux Falls, SD Argus Leader: South Dakota panel OKs study of autism's effect on children
Mar 10, 2014, Nashua (NH) Telegraph: Anti-vaccine belief is sometimes made worse (yes, worse) by pro-vaccine information
Mar 9, 2014, Guardianlv.com: Disney, Treatment for Children With Autism
Mar 9, 2014, Rockford (IL) Register Star: Caregiving in America: Heading toward a crisis
Mar 8, 2014, Pittsburgh TribLIVE: Experts: Anti-vaccine view a peril
Mar 8, 2014, Detroit HomeTownLife.com: 'Light it Up Blue:' Wood Creek Elementary takes the lead in drawing attention to autism
Mar 8, 2014, Philly.com: Missing autistic woman found dead in West Phila
Mar 8, 2014, Autism Daily Newscast: Vaccination poll a draw with Autism Daily Newscast readers
Mar 8, 2014, Buffalo (NY) News: A window of opportunity to halt autism?
Mar 7, 2014, Fox 13, Salt Lake City: Utah Autism Coalition official discusses proposed legislation
Mar 7, 2014, Philly.com: Younger Siblings of Kids With Autism May Show Early Signs of Problems
If you recall my last articles, I had become very intrigued by the story of Dr. Judy Mikovits and her investigation of retroviruses and their possible connection to chronic fatigue syndrome/ME as well as autism. In many ways I felt her story, especially the campaign of persecution against her, mirrored that of many other honest scientists who have looked for answers to the questions raised by these diseases.
That inquiry has resulted in Dr. Mikovits and I writing the book, “PLAGUE – One Scientists’ Intrepid Search for the Truth about Retroviruses, Chronic Fatigue Syndrome, Autism, and Other Diseases” to be published by Skyhorse Press on May 6 2014. The web-site for the book is now on-line at www.plaguethebook.com and you can pre-order from the site as well as read some other interesting content.
As an autism advocate, one of the things which has long drawn my attention is that so many of the mothers of children with autism have been diagnosed with chronic fatigue syndrome at one point, or like my wife, appear to have sub-clinical indications of the disorder.
Dr. Judy Mikovits, a 20-year veteran of the National Cancer Institute was well-placed to investigate these questions when she started her work on neuro-immune diseases like chronic fatigue syndrome and autism in 2006. Dr. Mikovits has published more than 50 peer-reviewed articles, many in the world’s top medical journals and she has been profiled in Discover magazine as well as the Wall Street Journal and The New York Times.
I must confess that the two years I spent writing PLAGUE have changed many of my views. I’ve been deeply impressed by the humanity and compassion of many scientists, while at the same time have become more keenly aware of the political and financial obstacles which prevent scientists from making the type of contributions to the well-being of society that they imagined at the beginning of their careers.
From Autism Action Network:
Michael Fine, MD, the state of Rhode Island’s Director of Health, is pushing the adoption of the worst forced shots regulations in US history. Every shot on the Advisory Committee on Immunization Practices (ACIP) recommended schedule, including the controversial HPV shot, will become mandatory to attend pre-school, daycare, elementary school, middle school, high school and college in Rhode Island. The ACIP is a federal commission composed of representatives of the vaccine industry with well-documented and pervasive conflicts of interest among its members. Fine has also proposed sweeping new vaccine requirements for employees of pre-schools. And unlike 20 other states where more than half the American population lives Rhode Island does not allow exemptions from vaccine mandates for secular reasons.
Children as young as six-months will be exposed through flu shots to quantities of mercury vastly higher than maximum exposure limits for adults. The HPV has an extremely bad safety record, and there is no data studying the effect of multiple injections of products the US Supreme Court has declared “unavoidably unsafe.”
ALERT: Please click this Take Action link to send a message to Governor Lincoln Chafee and your Rhode Island State Legislators stating your opposition to the plan.
Please Call Governor Lincoln Chaffee and politely state your opposition:
Please call Dr. Fine and politely let him now that you are opposed to his proposal:
Fine has been a private physician in family practice, and his wife is currently a physician in family practice which gives the Fine family a direct financial interest in the implementation of his proposal. Rhode Island law requires any public official to declare a conflict of interest and recuse themselves from decisions in which they or their families have a direct financial interest. Fine clearly should recuse himself from the adoption of these regulations.
I don’t usually get my news from CNN but choose instead to read less liberal-minded media outlets. But I saw a link posted by a friend midweek from CNN that caught my eye. I popped over to the website to see what the story was all about. The headline read, “New York Times corrects article about '12 Years a Slave' -- 161 years later.
(CNN) – “It's a correction more than 160 years in the making.
In its Tuesday edition, The New York Times published a correction for an article that ran on January 20, 1853.
The newspaper has Hollywood and Twitter to thank for bringing the error to light….”
I wasn’t sure whether to laugh or cry.
That’s a long time for a mistake to finally be corrected.
And Hollywood and Twitter? You can’t get more social media than those two sources. But more on that later.
Back to the mistake.
In the almost ten years I’ve been in this community, I’ve seen a lot. I’ve seen, heard and read it all. From the ugly truth we’ve revealed to the flat out lies those in power have told, our findings and efforts have been scrutinized and demoralized. Often told we’re the ones who are mistaken, we’ve realized time and time again, by peeling the layers of propaganda, indoctrination and sleaze stemming from the media, that no, we’re not. The private entities and even government funded sources, whose mission is supposedly to aid the public, who benefit from mistruth, half-truths and plain old untruths who’ve got their facts wrong. We’ve tried to bring those to light, but when we share our breakthroughs, instead of appreciating them, we’re mocked and told to be quiet. Fortunately, even being mistreated as we have, it hasn’t stopped us from continuing to speak up for our children and the cause.
When the mainstream media sources right the wrongs they’ve flung our way (come on, a girl can dream, can’t she?), can you imagine what kind of corrections we’ll see published?
By Dan Olmsted
Don’t you just love the word treacle? I do. It describes so much of what we're subjected to in pop culture these days. Without looking it up, because it speaks for itself, I’d say its approximate meaning is sickly sweet sentimentality without substance. It’s no doubt named after the candy.
So much of what passes as compassionate coverage of children in this day and age is so much treacle – commodified treacle at that, by which I mean it is packaged to sell, and one touching story is just about the same as another, only distinguished by its bathos quotient (which I think of as just slightly more treacle-y than pathos).
The more bathetic, the better.
Treacle is getting easier to get away with, and harder to get away from. The whole gloppy genre of troops home from the wars and tearfully embracing their families in a brand new home that some app helped them find, etcetera, while an indecipherable Mumford-like melody swells, is a case in point.
Another: On Good Morning America Friday, a child who I’m sure is deserving of all the loving-kindness coming his way was in the spotlight – he was afraid he couldn’t assemble any friends for a birthday party, because he didn’t have any friends, and his mother’s pleas led to an extravagant outpouring of new friends on Facebook. And did GMA ever have a birthday surprise for him!
According to the Daily Mail, “during a surprise visit to the set of “Good Morning America,” Colin Cunningham found out that he has friends all around the world, even though he has to eat lunch alone at school every day.”
And wouldn’t you know, “Colin is very friendly and open, but often shows symptoms of a mild form of autism, which is why he is typically shunned by his schoolmates.
“Fortunately, this is just one of the many difficulties that no longer seems impossible to conquer thanks to social media.”
Wow, social media as super-hero -- like Mighty Mouse, here it comes to save the day! No longer will a mild form of autism spread its evil tentacles around helpless kids -- not when heroes like Facebook and ABC have anything to say about it.
The on-air promos were enough to give me the general idea, so I turned the channel. But on the channel I turned to, the Today show was featuring Bat-Boy – the child with leukemia in remission who took over San Francisco for the day. Turned out he was going to be featured at the Oscars, but the bit got cut. Never mind, he got a trip to Disneyland with the real-life (meaning movie version) of Batman himself!
Now I have to say I loved the Bat-Kid story, which seemed to grow into a spontaneous citywide celebration of a child’s triumph over adversity. (Maybe it's because Batman and Mighty Mouse are my own personal cartoon-era heroes.) The GMA extravaganza feels different to me – a child with a condition that has not been alleviated by all the attention, but is made to seem so.
Urge your Legislators to Protect New Jerseyans with I/DD From Eviction
The New Jersey Department of Human Services' Division of Developmental Disabilities (DDD) is moving ahead, with the blessing of Governor Chris Christie, on two initiatives that will result in hundreds of New Jersey's most fragile citizens with intellectual and developmental disabilities (I/DD) losing their homes.
The Governor recently announced a new, aggressive timeline for the closures of the North Jersey (by July 2014) and Woodbridge (by Jan 2015) Developmental Centers. These closures, being pursued by DDD, come at the same time as DDD is aggressively pursuing its "Returning Home New Jersey" initiative which seeks to move New Jersey citizens now receiving quality supports in other states (for lack of supports in New Jersey), back to New Jersey.
The vast majority of the hundreds of affected individuals with profound I/DD and their families/guardians OPPOSE these transitions. Woodbridge, North Jersey, and the targeted facilities in other states (including Woods Services, Melmark and Devereaux) are HOME to the affected residents, and have been for years, even decades. Many residents have experienced failed "community" placements and will predictably suffer if transitioned to unprepared, unlicensed smaller settings.
These proposals are dangerous and cruel. They are being pursued with a goal that money will be saved, but even that goal is highly questionable if adequate, life-sustaining services are provided. With a waiting list of more than 8,000, what makes New Jersey think they can safely serve individuals with profound I/DD with complex medical and behavioral challenges in already over-saturated, underfunded "community" system. And why? The affected individuals are already receiving great care.
Taking action is easy – just click here for a ready to send letter that will be sent directly to your legislators. Then share this alert with all your New Jersey family and friends on email lists and social media. (New Jersey residents only please.)
We believe strongly that a position in support of person-centered needs and choice is not only morally correct, but also legally justified by the Supreme Court's Olmstead decision. These individuals are already home. Please help by taking action today.
By Anne Dachel
Read Anne's commentary and view the links after the jump.
The daily media update is sponsored by Lee Silsby Compounding Pharmacy and their OurKidsASD brand:
Mar 7, 2014, Northern Virginia Daily: Editorial: Another example of government waste
Mar 6, 2014, Raleigh, NC, WRAL TV: Blood test to determine autism risk, researchers hope
Mar 6, 2014, The Times of Israel: Israel's figures are rising; still far rarer than in the US and Canada
Mar 6, 2014, ABC 13, Lynchburg, VA: New Autism Center Opens in Lynchburg
Mar 5, 2014, Taunton, MA: Dr. Murray Feingold: Don't be alarmed by the numbers
By Anne Dachel
Read Anne's commentary and view the links after the jump.
The daily media update is sponsored by:
Mar 10, New York Magazine: The Right’s Favorite Mainstream Benghazi Reporter Resigns From CBS
Mar 10, ABC News: Parents Reach Son With Autism Through Disney Movies
Mar 10, 2014 Huffington: 5 Things Everyone Should Know About Autism
Professional vaccine operatives like Dorit Reiss have been hard at work for some time to exaggerate the dangers of the vaccine-preventable diseases, while simultaneously denying the damage that the vaccines for them often do. A case in point was found in the comments on this article on the Mother Jones website last week:
The topic had turned to the hepatitis-B vaccine, given to all newborns in the U.S. while they were still at the hospital, beginning in 1991 (at the beginning of the autism epidemic). I put up information I had found in Dr. Bob Sears’ The Vaccine Book, a link to a CDC report with a chart at the bottom showing the rate of hep-B diagnosis in children 1-9 from 1986, five years before the vaccine program began.
The chart at the bottom of the report clearly shows that the rate at which hep-B was diagnosed in children was less than one per 100,000 or fewer than 360 a year in a childhood population of 36 million in 1990. The text at the top of the report, however, states: “Before 1982, an estimated 200,000--300,000 persons in the United States were infected annually with HBV, including approximately 20,000 children.” The source for this large number was an article in Pediatrics in 2001. It uses the word “estimated” because this is a purely speculative figure, not based on the disease being diagnosed by blood tests carried out by physicians.
Hepatitis B is a very dangerous disease when contracted in the first year. At that time, the only means of transmission, except in extremely unusual and almost unimaginable circumstances, is from contagion by an infected mother. It is usual to perform a blood test on a pregnant woman to learn whether her child is at risk, in which case it would probably be best to give the baby immunoglobulin and the vaccine when it was born. But instead it has become standard practice in the U.S. to give this dangerous vaccine to all newborns, even those born to healthy mothers, and very common to give the vaccine to the newborn without the permission or knowledge of the parents, making it harder to realize that the vaccine was the cause of the child’s autism, diagnosed years later.
The virus is transmitted like AIDS, by infected blood/body fluids to blood/mucus membrane contact. It is most commonly contracted by unsafe sex with a carrier or by shared use of needles used by illegal drug users. Medical personnel exposed to infected blood are at some increased risk, but it is not as great as is commonly believed. It is not spread by the sharing of eating utensils or drinking glasses, or sleeping in the same bed as an infected person. It may sometimes be transmitted by sharing toothbrushes or razors. Australia did a study which showed that it was not transmitted by children at school. (Burgess, MA and McIntosh, EDG, “Hepatitis-B in urban schoolchildren – No evidence of horizontal transmission between high-risk and low-risk groups,” Med J Australia, 5 Sept. 1993; 159: 315-319, quoted Wendy Lyall, Raising a vaccine-free child, p.178). Everett Koop went to a lot of trouble thirty years ago to persuade people not to fear casual contact with those infected with HIV or AIDS. But now the pharma operatives are drumming up terror at the idea that there MAY have been twenty thousand children a year getting hepatitis-B before 1991, but, since they had NO symptoms, no one ever noticed or diagnosed it. It was only when they grew up and were finally diagnosed with it that the moment they had contracted it was unsuccessfully sought.
Many believe that the vast majority of this group caught it in the usual ways, by unsafe sex and/or sharing of illegal IV drug needles. Many of them were probably unwilling or unable to share the details of their sex and drug lives with inquiring researchers. But, without having proven that there really had been twenty thousand children a year getting a sexually-transmitted disease by unknown vectors, was it really a good idea to start giving all newborns a highly reactive vaccine?
I have felt the brunt of bullies, abuse, and discrimination throughout my life. About a dozen examples come to mind. These are all life changing and not in the garden variety restaurant or grocery store nasty comment or glare. Now before I get started let me say although I see heredity at play in our family my Grandfather, Father and myself fall into the "just a little different" category and have never been diagnosed formally as being on the autism spectrum. I would say we all were autism level 0. The category of those that can contribute without assistance but are on the outside of the social mainstream.
I am bringing up these five situations just to give examples of what those on the spectrum may face and not be able to defend for themselves. At some point we will have to address these issues for parents and adults on the spectrum. The original title I had for this piece was "What does discrimination towards parents and those on the Autism spectrum look like?" I thought about it and wanted to make sure that you understand that I take full responsibility for getting myself into these situations. Although, in each one Judges, adjudicators and counselors have found that I had reason to suspect discrimination.
The five situations can be broadly described in the following way. 1. Emotional reflection of a manager and outburst. 2. Lack of sleep impacting job performance / Not taking family needed family time. 3. Removal from a non-profit board after phone meltdown. 4. Denial of Positon / Does not meet "Requirements" 5. Taking things literally - Whistle-blowing. Reporting demeaning behavior and crude jokes in the workplace.
Imagine yourself in a closed door, private employee meeting. Described by the manager as a "Come to Jesus" sales meeting. A very aggressive manager has 8 of us cornered and is screaming at us. I counted the "F - bomb" being dropped 15 times. I was uncomfortable being in very close quarters to my peers. I analyzed and agonized over every word over and over and each personal attack hurt more. After personal confrontation and rule changes I was very frustrated. So at my breaking point I lets loose in reflection with a "Grow some F***ing Balls." Immediately the room was cleared and I was let go from the company. To this day I do not understand why others can cuss all day and I drop one "F -Bomb" and I get censured.
KruGlu, Inc to Launch Vivo a text message based emergency identification and alert system
SAN MATEO, CA, Feb 14, 2014 - KruGlu, Inc, announced today that it will launch Vivo, a text message based emergency identification and alert system that will greatly benefit children, elderly, adventurous folks and people with special needs.
Vivo is a simple, yet extremely fast way to help identify a person and simultaneously notify their emergency contacts if they are hurt or lost. In an emergency first responders will be able to text a unique Vivo identification number and receive pre-authorized, user controlled, information almost immediately (depending on wireless coverage). Designated emergency contacts will receive a text message indicating that the person with the Vivo ID has been involved in an emergency. This real-time identification enables first responders to potentially modify and properly treat patients based on medical details such as an allergy to penicillin or other medical condition and enables emergency contacts to communicate in minutes, not hours, with first responders to obtain valuable information such as patient status, update, or destination.
Mar 4, 2014, TIME: Nothing, Not Even Hard Facts, Can Make Anti-Vaxxers Change Their Minds
Mar 3, 2014, WALB Albany, GA: Law enforcers to take special Autism course
By Katie Wright
I want to thank the perceptive and hard-working Congressional staffers who wrote the Government Accountability Office’s report on autism research. The GAO report is similar to the work of the IACC support staff: the record keeping is excellent the portfolio analysis, the publications analysis exceptionally well done. If only the actual NIH autism grants were half this good….
The GAO report is comprehensive, well researched and, perhaps, most importantly of all, truly representative of the interests and concerns of American families affected by autism. It is also worth noting that the correct, most judiciously spent, portfolio of autism research is in the best interest of every taxpayer.
Democracy is a beautiful thing. Unlike the Soviet style leadership appointments for life at the NIH and the CDC, elected representatives are accountable to consumers. They take our calls and respond to our concerns. If they do not perform well, representatives lose their jobs! That is certainly NOT how things work with the NIH leadership.
OK, so this very fair and very sensible GAO report basically states that there is excessive duplication in federally funded research AND a corresponding UNDER-investment of NIH dollars in other important areas of autism research. For example, there are over 11,000 studies on autism and early intervention. A dozen years ago we indeed needed studies on early intervention, but right now there are 11,000 such studies, let’s take a pause, OK? However, there is a tiny, teeny, tiny amount of research about treatment for ASD children above the age of 5 and almost no environmental research.
Listen, I am just an ordinary housewife, not a brilliant economist but when I buy groceries for the week I buy fruits, vegetables, protein and some starch. I have to cover all the bases right? You guys reading this know what I mean. I imagine if Dr. Insel were grocery shopping he would buy 100 apples, some hamburger meat and call it a day. It isn’t as apples and meat are awful but it is crazy to keep buying so much of the same thing while neglecting everything else you need.
In the same vein, IACC seems to be content with continuing to overfund the area of early intervention and genetics. Yet, the public has been asking the NIH to research treatment for children still profoundly autistic despite early intervention. We desperately need research into biomedical treatment for all the ASD children with physiological problems. Nevertheless, Dr. Collins and Dr. Insel refused to appoint even ONE immunologist, GI or one environmental scientist to the IACC committee. And believe me scores of advocates nominated many excellent candidates in all three of these disciplines.
This weekend I will reach the milestone of 125,000 tweets for Autism Action as @TannersDad. I would like to open the floor up to our Age of Autism family to pen that tweet.
I will chose the best of the best comments on this post. Feel free to share on Facebook, groups and other formats. It will be the winners choice to be anonymous or credited. I like for milestone tweets to me moving monumental and personal. Who, what where, when and how has the Autism vaccine injury environmental crisis impacted your family. Call them to action. Call them to task. Your best in 100 - 110 characters.
Mar 3, 2014, CBS News:: Pro-vaccination efforts, debunking autism myths may be scaring wary parents from shots
Mar 3. 2014, Al Jazeera America: Measles outbreaks spark fears of return of a disease
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.
Mary Beth Palo of Watch Me Learn has a fantastic giveaway for Age of Autism. 7 DVDs worth $175.00.
One reader will win in all five the first classic videos which involve uninterrupted continuous scenarios. Plus the additional two videos which are broken up into three different sections of video for each of the ten scenarios. Maintaining the comfortable, familiar, and fun social environment loved in the classic series, these videos add extra teaching video, setting up a vocabulary section and a small group teaching session which can be utilized in the classroom or in therapy. This gives the facilitator a very simple tool to teach the necessary language and to teach the skill in isolation before generalizing it into a play or real-life scenario.
Learning the target skills is fun and easy when it involves friends!
LEAVE A COMMENT TO ENTER.
Learn more about video modeling at Watch Me Learn.
Mar 2, 2014, Palm Beach Post: West Palm Beach walk for autism draws thousands
Mar 2, 2014, Las Vegas Review Journal: Parents of autistic children decry state's long wait list for services
Mar 2, 2014, CNBC: The big investment opportunity in autism?
Mar 1, 2014, The Week: The worrying rise of the anti-vaccination movement
Mar 1, 2014, Forbes: Who Was First With Shocking CDC Autism Data?
Feb 28, 2014, Wall Street Journal: THREE SEPARATE STORIES DENYING A LINK
Feb 28, 2014, Sacramento Bee: SC project looks for autism breakthroughs
Feb 28, 2014, PRNewsWire.com: Vaccine Industry Watchdog Responds to Forbes' Defense of Mercury-Laced Vaccinations
This is something I wrote about in December – original article appended – occasioned by Emily Willingham’s attempt to respond in Forbes to the Brian Hooker/Shot of Truth’s press release a few days ago . The question I pose is what would actually happen if government officials ever had to answer questions. I guess it might look something like Coleen Boyle of the Centers for Disease Control trying to fend off questions for five minutes from Congressman Posey in November 2012 . What, of course, we actually get in this instance is Emily Willingham, a person with no responsibility for the policy and no grasp of the scientific issues, trying to sow confusion. For Willingham the right answer is just the usual bureaucratic stitch-up masquerading as hard science. The last thing she wants is people rummaging around in the CDC’s cupboards. Re-challenged by Hooker you get the same answer all over again. But, of course, the point is that it does not ultimately matter what Willingham says because she is not accountable and nor are the rag, tag and bobtail crew of characters that hang around on her website and elsewhere.
The system is about non-accountability. The pharmaceutical companies are unsuable, the bureaucrats unanswerable and make claims for the products that the companies themselves would never risk. People like Willingam and Dorit Reiss – the public vaccine compliance lady who cannot make up her mind whether she is simply a concerned mother or a nationally ambitious tort lawyer – are surrogates for the people who might have to answer. As I remarked in my original piece Reiss made her debut in the field when she was conveniently slipped in protecting bioethicist Art Caplan from having to answer awkward questions from Mary Holland in Harvard Law Journal. What this system deserves above all is our blistering contempt.
This post first ran on 12/20/13:
By John Stone
One of the problems that the phenomenon of Dorit Reiss points to is the fundamental lack of solidity of vaccine science: we are not talking about something like the laws of thermodynamics, the periodic table, the theory of relativity – instead it is something that has to be defended by a sequence of dodgy manoeuvres and obfuscations. The claims for the vaccine program which are being made are politically absolutist but there is no unchallengeable super-theory behind any of it, only a multitude of industrially manufactured products which may be neither as effective or as safe as their advocates claim, have usually not been as well tested as they should have been, and can only be defended by a bulwark unbalanced legislation backed up by endless institutional malfeasance. Pubmed, the index of peer review medical studies, is testament to this: even if there are many studies which are favourable to products it does not make anything about their findings immutable evidence, or proof of anything. They can only be provisional.
Nor is the quality of all that evidence necessarily high despite sentiment that vaccines are a good thing. The 2005 Cochrane Review of MMR vaccine safety, concluded after having sifted 5,000 studies :
“The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate. The evidence of adverse events following immunisation with MMR cannot be separated from its role in preventing the target diseases.”
Indeed, this body of evidence was so poor that it was not even clear how most of the final 31 studies admitted to the review met the inclusion criteria.
Dr. Brian Hooker, PhD, says Forbes misrepresented congressional record and CDC studies
CHARLOTTE, N.C., Feb. 28, 2014 /PRNewswire-iReach/ -- Last week, PhD biochemist Brian Hooker created a stir when he announced he had obtained sensitive documents from the CDC (Centers for Disease Control and Prevention) through Freedom of Information Act (FOIA) requests. According to Hooker, these documents implicated the vaccine preservative Thimerosal (50% mercury by weight) in causing autism and other neurodevelopmental disorders, revealing what he says CDC officials had long known, but never disclosed publicly: a 7.6-fold increase in autism during infancy after exposure. Emily Willingham, who frequently editorializes in support of the vaccine program, responded in Forbes by criticizing a news story that went viral on the subject of Dr. Hooker's FOIA revelations.
Dr. Hooker methodically itemized "misrepresentations and outright errors" that he says appeared in Forbes.com. "Willingham either confused two CDC studies or intentionally deceived Forbes' readers," said Hooker. "There was one concealed study that found a very high association between Thimerosal and autism. That was the study that was kept from the public which I obtained. And there was a later study by the same researcher – CDC-paid epidemiologist Thomas Verstraeten – who had watered down the results of the earlier study to appear as if there were no association between Thimerosal and autism. That second study was made public even though it was fraudulent. Willingham pointed to the conclusions of the later study and implied that they came from the earlier study."
Although Willingham denies that the CDC researcher, Dr. Verstraeten, was under pressure to alter the results of the earlier study, Dr. Hooker points out that Verstraeten's own email written at the time (an internal CDC document obtained through FOIA) reveals otherwise. Verstraeten's subject line, "It just won't go away," refers to his difficulty in making the statistical association between Thimerosal and autism disappear.
Making an example of how he says Dr. Verstraeten hid that association in his reanalysis of the data on 400,000 infants, Dr. Hooker says Verstraeten did not include clinics within HMOs where there was a strong correlation between Thimerosal exposure and autism incidence. According to Hooker, "Willingham brazenly disregarded Verstraeten's own chilling words: 'All the harm is done in the first month [of life]…' He wrote those words about the study I obtained." The abstracts of Verstraeten's two studies and further comment on the controversy can be viewed here.
Consumer Reports magazine was a go-to resource for my parents when I was growing up. Cars, household appliances and electronic equipment, my parents relied on having that subscription to research big-dollar items they were preparing to purchase. I haven’t had the need to read or to buy my own subscription to Consumer Reports, so color me shocked and appalled when I stumbled upon a link for an article about vaccines on an autism listserv I belong.
When I read the article, my jaw dropped. I had no idea that Consumer Reports was in cahoots with, and apparently a mouthpiece for, the vaccine industry. Not only are they a mouthpiece, in other articles on their website they’re promoting exactly which vaccines they think certain groups need and discuss where to get them.
Last I checked, vaccines were not 100% free of problems. Too bad Consumer Reports hasn’t done as thorough a review of vaccines like they tend to do with other products. With how many vaccines have caused adverse reactions, a publicly shared consumer-based rating report would most certainly be beneficial.
For years now I’ve wonder if anyone has made a vaccine rating scale, similar to a scale that Consumer Reports uses. From what I remember when I read the magazine as a youngster, I recall that they did a good job showcasing all there was to know about a product. Testing products on a variety of features, readers relied on ratings of how well or how poorly the product did. Using red and black symbols with distinct shadings and markings correlating to a product’s performance, one could quickly assess the performance level while also note the pros and cons of what had been evaluated. Even as a child, looking at the charts I could quickly see which items were well made and which ones were less than desirable. We need something like that for vaccines, too.
Just like many items found on the pages in Consumers Report, vaccines are advertised and put on the market to be sold. They are products. Sure, the Vaccine Adverse Effect Reporting System (VAERS) provides some statistics for some vaccine products, but that is if the vaccine injury is believed and documented in the medical file, and if it is reported to VAERS by the medical provider. Unless someone is very familiar with vaccine injury, most people I talk to have never heard of VAERS.
Our indefatigable Anne Dachel passed along a story Friday with the kind of title we are by now immune to, so to speak: "The Dangerous History of Anti-Vaccine Comspiracies," by Jeffrey Kopman. It was the usual mashup -- mishmash is probably a better word -- of Andy Wakefield being a fraudster, and the horrifying attack of mutant killer illnesses, and parents being so profoundly deluded as to think their child had a life-wrecking vaccine reaction just because their child had a vaccine followed by a life-wrecking reaction. (They are not the same thing!) How dare these benighted parents tell anyone such a tale, when endless scientific "experts" say it didn't happen because it couldn't happen? How very dare they?
But this article, as the Church Lady would say, was special: the piece was published by The Weather Channel, of all places. And its first paragraph is quite a piece of work: "Forty-three years after the measles-mumps-rubella (MMR) vaccine hit the mainstream, the disease is still flaring across the country — as are mumps, rubella and whooping cough."
Now say whut, exactly? MMR disease is still flaring, as are mumps, rubella and whooping cough? Not gonna happen. Like all Gaul, the MMR is divided in three -- their cumulus total is not another disease, unless you want to count autism (snicker, snicker). These people, they make fun of our lack of scientific understanding and then they start off like that?
On a happier note, I was really glad to see that Paul Krugman is retiring from Princeton and heading to City University, in part because he wants a vibrant big-city milieu (he mentioned Zabar's, a specialty food store on the Upper West Side), and also to focus more sharply on the issue of income inequality.
Not that there's anything wrong with Princeton. What makes me happy, rather, is that Paul is my age, 61, shares my political outlook, and even my college class, and is serving notice that he's not letting up, he's bearing down on what he cares about most. And he's enjoying himself.
I can dig it.
Feb 28, 2014, The Weather Channel: The Dangerous History of Anti-Vaccine Conspiracies
Feb 27, 2014, Seattle Q13 Fox News: Mom of autistic student pulls him out of school after bus incident ‘freaked me out’
Feb 27, 2014, Cleveland Plain Dealer: Can you identify signs of autism in a one-year-old? (video)
With the passing of Harold Ramis, I was surprised to learn of the medical condition that led to his death. I remember him as Private Russell Ziskey in Stripes, an unemployed parapsychology professor in Ghostbusters, and as a co-writer in Animal House. Press releases state that the actor, director and screenwriter succumbed to complications from autoimmune inflammatory vasculitis (vass-ku-lite-us). According to medical journals, autoimmune inflammatory vasculitis is an acquired disease that causes inflammation of the blood vessels. In Mr. Ramis’s case, it was reported that he had extreme difficulty walking and using his legs and arms.
So how did this horrible disease afflict Mr. Ramis? Dr. Waseem Mir, a rheumatologist at Lenox Hill Hospital in New York told CBS news that only 1% of the US population has this disease, making it extremely rare. However, Dr. Peter Merkel, a rheumatologist and director of Penn Vasculitis Center at the University of Penn medical school told CNN that “Mr. Ramis had one of 15 identified variants of vasculitis. None of these conditions individually affects more than 200,000 people in the US. But if you add them all up together, it’s not rare, and the chances are everybody knows somebody, directly or indirectly, that is affected.”
Now does that last sentence sound familiar? Maybe in discussions about vaccine injury? If two leading rheumatologists cannot agree whether or not this medical condition is rare, why not examine some previous medical cases of vasculitis?
In a paper presented by Tomljenovic and Shaw in 2012 regarding the death of two individuals who were administered the HPV vaccine, tissue samples of the brain led the authors to interpret the results as demonstrating an autoimmune cerebral vasculitis. Now, we can confidently assume that Mr. Ramis did not receive a Gardasil vaccine, but it does bring vaccinations into the question. Another study, published in 2009 by Birck, Kaelsch, et al, titled “ANCA-associated vasculitis following influenza vaccination: causal association or mere coincidence?” did not prove a causal association between influenza vaccine and vasculitis, but it did assert that in rare cases vaccination might induce vasculitic disease. Now we have the possibility that influenza vaccine might, under “rare” conditions, induce vasculitis.
This week AofA has focused on an outbreak of "Polio-like" symptoms in California.
Doctors May Have Missed Pesticide Clue in California’s “Polio-like” Cluster
Child in “Polio-like Cluster” Linked to California’s Winemaking Industry
“Polio-like” Cluster in California Has Eerie Echoes
Below is Dan and Mark's 7 part series on polio which ran in 2011.
By Dan Olmsted and Mark Blaxill
1. The Wrong Narrative.
Polio is the iconic epidemic, its conquest one of medicine’s heroic dramas. The narrative is by now familiar: Random, inexplicable outbreaks paralyzed and killed thousands of infants and children and struck raw terror into 20th century parents, triggering a worldwide race to identify the virus and develop a vaccine. Success ushered in the triumphant era of mass vaccination. Now polio’s last hideouts amid the poorest of the poor in Asia and Africa are under relentless siege by, among others, the Bill & Melinda Gates Foundation. Eradication is just a matter of time, and many more illnesses will soon meet the same fate.
But based on our research over the past two years, we believe this narrative is wrong – and wrong for reasons that go beyond mere historical interest. The misunderstanding of polio has warped the public health response to modern illnesses in ways that actually make them harder to prevent, control, and treat.
The reality, we believe, is that the virus itself was just half the epidemic equation -- necessary but not sufficient to create The Age of Polio. Outbreaks were not caused solely by poliovirus – the microbe was an ancient and heretofore harmless intestinal bug -- but by its interaction with a new toxin, most often innovative pesticides used to treat fruits and vegetables.
This alternative narrative makes better sense of the natural history of polio, and it resolves a number of anomalies that remain to this day. It suggests why poliomyelitis outbreaks emerged, evolved, and exploded the way they did; it probably solves, for the first time, the enduring riddle of why Franklin D. Roosevelt was afflicted 90 years ago this summer on Campobello Island; and it may mean today’s billion-dollar-a-year eradication effort is misguided, if not downright quixotic.
These are large claims. Let us explain.
Polio was a strange illness, never fully understood even by those who devoted their lives to studying and subduing it. It was a summer plague, coming on in late spring and all but vanishing in the fall. Many thought contagion had something to do with water, and Americans kept their children away from swimming pools in droves.
Feb 26, 2014, Austin (TX) Statesman: Student with autism charged with assaulting Pflugerville schools administrator
Feb 26, 2014, TIME: More Bad News for Older Dads: Higher Risk of Kids With Mental Illness
Feb 26, 2014, Huffington: The Real 'Autism Epidemic'
Feb 26, 2014, Dallas Morning News: Older dads more likely to have kids with bipolar disorder, autism, ADD, study finds
Feb 26, 2014, Fox News: New autism guidelines may reduce diagnoses by nearly one-third
Read Dan and Mark's posts earlier this week:
Child in “Polio-like Cluster” Linked to California’s Winemaking Industry and
By Dan Olmsted and Mark Blaxill
One of the California children with “polio-like” symptoms ate raspberries right before she got sick, her mother said Wednesday -- but that didn't seem to set off any alarm bells about pesticide residue from the medical experts investigating the baffling outbreak.
“She was wheezing, then she had lunch with raspberries and then we went to [the] pediatrician's office where they said she sounded like asthma,” Jessica Tomei said in an email, describing the symptoms her daughter, Sofia Jarvis, experienced in November 2012.
“On the way home she threw up. The next day we were in the hospital. 5 days later her arm was paralyzed. I kept mentioning the raspberries but botulism was ruled out.”
Doctors and public health officials have focused on microbes in their hunt for the cause of the cluster, which so far comprises five children in the San Francisco Bay area and a reported 20 more throughout the state. The five cases occurred between August 2012 and July 2013. Officials said a rare enterovirus – a stomach bug – was detected in two of the cases.
But given Jessica Tomei’s account, pesticide residue seems to us like a prime suspect. “Fruit is notoriously difficult to grow organically and without pesticides,” Jeff Moyer, farm director at the Rodale Institute, an organic research institution, is quoted as saying on the institute’s Web site. According to the institute, “Because most fruits have soft skins, the pesticides that are used to kill those bugs (and the molds and fungi that also love fruit) get into the flesh and into your mouth, and no amount of peeling or washing can remove them.”
We reported Wednesday morning that Sofia’s parents, Jessica Tomei and Jeff Jarvis, are professional winemakers, but her mother was dubious of a chemical connection via that route. On Wednesday, she mentioned the raspberries as a likelier source of pesticide.
“She had raspberries the morning of her illness -- they ruled out botulism. If what you are saying is true, perhaps the raspberries played a part. I believe more chemicals are used in that type of agriculture vs. vineyard. Interesting thoughts.”
In our 2011 series, The Age of Polio – How an Old Virus and New Toxins Triggered a Man-made Epidemic, we proposed that beginning in the late 1800s, the poliovirus – for millennia a harmless enterovirus – was rendered dangerous by its interaction with the new agricultural pesticide lead arsenate. Our theory: the pesticide caused damage that allowed the virus to penetrate the nervous system and reach the spinal cord, where it caused the paralysis called poliomyelitis.
Feb 25, 2014, Naperville (IL) Sun: Naperville ASPB Therapy Pathways offers daycare program
Feb 25, 2014, Fox 43, York, PA: Lawmakers push to end 'scream rooms' for punishing students
Feb 25, 2014, Forbes: Hyping Your Conspiracy Theory In 5 Easy Steps
One of the five children in the cluster of polio-like paralysis cases around San Francisco is the daughter of professional winemakers, seeming to strengthen the possibility we raised Tuesday that exposure to agricultural chemicals could be a factor in the cases.
Sofia Jarvis, whose story was reported on ABC and other national outlets, is the daughter of Jessica Tomei (above) and Jeff Jarvis, husband-wife co-owners of JarvisTomei winery. Jessica Tomei is also listed as director of international winemaking for Cupcake vineyards in Livermore, California. She has a degree in viticulture from the University of California, Davis, and according to her Linked In profile, her duties at Cupcake include "vineyard management." The family lives in Berkeley.
In a story Tuesday, we wrote that the new outbreak -– five confirmed paralysis cases from Monterey up through the San Francisco Bay Area, and about 20 more statewide as far away as San Diego -- echoes early outbreaks of actual poliomyelitis in the 1890s. Three of the first 12 polio clusters in the United States occurred in California – in the San Francisco area, in the San Joaquin Valley, and in San Francisco and Napa.
In 2011, we published a series of articles, The Age of Polio, which suggested that those and subsequent outbreaks were triggered not by the poliovirus alone but in combination with a new pesticide that came on the market then, lead arsenate. We proposed that when someone with an active polio infection -- usually a child not yet immune to the virus -- ate produce treated with the pesticide, the toxin could allow the virus to reach the spine, causing the paralytic and sometimes fatal disease called poliomyelitis.
In that series and again on Tuesday, we wrote that the presence of the San Jaoquin Valley among early outbreaks pointed to an agricultural vector as the cause (as did several other locales), and that the San Francisco/Napa cluster specifically suggested “widespread early use of lead arsenate in grape-growing country.” Lead arsenate was replaced as a pesticide by DDT, and DDT in turn by newer and supposedly safer chemicals that are nonetheless toxic by design to living things. So the idea that successor pesticides, similar in effect to lead arsenate and DDT, could still be triggering paralysis in children infected with a virus similar to polio made sense to us.
In a brief conversation Tuesday afternoon, Jessica Tomei seemed skeptical of the idea that agricultural chemicals played any role in 4-year-old Sofia’s illness. “We don’t have vineyards,” she said of the company she owns with her husband. “This happened at the end of harvest in November . She was not with me at any of those vineyards.”
Tomei said doctors “did test for metals, Lyme disease, all kinds of things,” but didn’t come up with anything. “They’re thinking more viral.”
In a subsequent e-mail, she wrote that “I am not an expert in this so I cannot comment. The idea of bringing attention to this is to have people start collaborating to figure out what might have caused it.”
Feb 25, 2014, ABC News: Royal Caribbean Is Latest Entrant into Autism-Friendly Travel
Feb 24, 2014, Kansas City Star: What's so funny? Plenty for parents of autistic kids
Feb 24, 2014, Salt Lake Tribune: Bill to grow Utah's autism lottery edging closer to passage
Feb 24, 2014, Los Angeles Times: The rights of the unvaccinated child: The legal view
Feb 24, 2014, Fox News: Environmental toxins can be destructive to women's reproductive health
Here’s something worth knowing about the cluster of “polio-like illnesses” identified by doctors in the San Francisco area: Some of the first outbreaks of actual poliomyletis in the United States more than a century ago happened in the same area.
Is history repeating itself? Are more cases on the way, and not just in California? It’s a question worth asking, and far more important to public health than headline-grabbing measles and whooping cough outbreaks. But don’t hold your breath, because the real answer may say more about the nature of modern illness than most mainstream medical “experts” would care to consider.
As news outlets reported on the cases on Monday – “five patients who developed paralysis in one or more of their limbs between August 2012 and July 2013” in a 100-mile radius in California, CNN said – I was drawn back to the series Mark Baxill and I wrote in 2011, called The Age of Polio: How an Old Virus and New Toxins Triggered a Man-Made Epidemic.
In that 12,000-word series, we argued that a fresh look at the evidence suggested that for millennia, polio was almost always a harmless enterovirus – a stomach bug – until late in the 19th century. That's when a new pesticide called lead arsenate allowed the virus access to the nervous system, where it reached the spinal cord; this combination was the trigger for the first outbreaks of the paralytic disease called poliomyelitis.
“The reality, we believe, is that the virus itself was just half the epidemic equation -- necessary but not sufficient to create The Age of Polio," we wrote. "Outbreaks were not caused solely by poliovirus – the microbe was an ancient and heretofore harmless intestinal bug -- but by its interaction with a new toxin, most often innovative pesticides used to treat fruits and vegetables.” When children who were infected with the virus ate lead arsenate-laden produce, they were exquisitely vulnerable.
As evidence, we cited the first dozen or so outbreaks that occurred in the 1890s, just as lead arsenate was invented and first used commercially. The first of those clusters was “in 1893 in Boston (26 cases, no deaths). Then, in 1894, came what is widely regarded as the first major epidemic, in Rutland and Proctor, Vermont (132 cases, 18 deaths). Thirty more outbreaks – from such seemingly disparate locations as Oceana County, Michigan, and California’s Napa Valley -- were reported in the United States through 1909. The worst by far was New York in 1907, with 2,500 cases and a five percent mortality rate, a harbinger of the 1916 epidemic in the Northeast that killed 2,000 in New York City alone.”
Ah yes, California’s Napa Valley, just above San Francisco. Anyone? Anyone? We suspected widespread early use of lead arsenate in grape-growing country. In fact, the San Francisco area was home to three of the first dozen outbreaks – a quarter of the total. According to the peer-reviewed journal paper, “The Spatial Dynamics of Polio,” they were San Francisco and Napa, 1896 (three victims); San Joaquin Valley, 1899 (four victims); and San Francisco and vicinity, 1901 (55 victims). One fourth of the earliest clusters, in and around San Francisco.
Feb 24, 2014, Eagle Tribune North Andover, MA: Parents of autistic children launch dinner club
Feb 23, 2014, Cookeville (TN) Herald-Citizen: Fry appointed to state council on developmental disabilities
Feb 23, 2014, Brooklyn Reader: Vaccines- Panacea or Poison?
Feb 22, 2014, Seattle Times: "No funding available" - A family's struggle
Feb 22, 2014, Forbes: Is The CDC Hiding Data About Mercury, Vaccines, And Autism?
The process of living involves risk. We are not given a map to plot our course from birth to death. Nobody can answer the question for you "What do you want to be when you grow up?" Although, many will try to guide you, they do not have a crystal ball into the inner workings of your mind, marriage and family. I wanted to explore an area that seems to be ignored when we are talking about being a parent dealing with a child with Special Needs specifically Autism, the recent ups and downs of the economy, our careers, and ego.
For many years, a source of embarrassment in interviews was the number of jobs I have held. This morning I went back to my full resume and counted. Since I was 16, I have worked for 20 different companies. I was so concerned about this I had a professional job coach evaluate my resume. I was taught I was supposed to list everything on this document. He came back with Tim "Just add the word "Relevant" to the experience heading" He then proceeded to tell me only to list the 4 to 6 jobs that made me the perfect candidate for the position I was applying for. Amazingly, the next job I applied for I got.
For many people their identity is intertwined with their chosen career. In the past it seemed this was more of a male gender specific issue but recently I have noticed that females are becoming as attached to this identification. I will always remember a sad situation where a relative was suffering from Alzheimer's. The only family member he regularly remembered was me and he identified me as the "Penney Man". My longest stint with one company was 16 1/2 years with JCPenney Department Stores. This identification with my career was a constant gnawing on my soul. Is that what will be etched onto my tomb stone?
Managing Editor's Note: We've excerpted this terrific post from Nutrition Care for Kids.
By Judy Converse
Want to clear a room fast? Tell people your kids aren’t vaccinated. Then say, “Not only is that why they’re so healthy – it helps your kids stay healthier too.” Wait. What? Unvaccinated kids, healthier? Aren’t they walking cesspools of infection, recklessly spreading disease in their wake? Aren’t they leaches, getting a free ride away from infections, on the backs of all those good parents who vaccinate their kids?
The CDC maintains that they can’t solve this question for us. Their posture is that it’s unethical to study vaccinated versus unvaccinated kids, presumably because it isn’t safe to not vaccinate anybody. But ongoing survey data show that unvaccinated kids are healthier. They have fewer allergies and asthma, less autism, fewer chronic conditions and are sick less often. Even though these data come from an uncontrolled voluntary survey (over 13,000 participants worldwide and growing), the differences are enough to give anyone pause – and plenty big to warrant formal investigation. By factors of double, triple, or tens of times, vaccinated kids show a higher illness burden than their unvaccinated peers, for conditions like epilepsy, diabetes, thyroid disorders, autoimmune conditions, autism, allergy, asthma, and more.
Meanwhile, the argument that a pool of vaccinated kids is needed to quash a return of infections is starting to crumble (bolstering the position held by some that vaccines can’t confer herd immunity): Even with compliance for most immunizations at over 90% across the US – above the level considered necessary for successful herd immunity – we still have outbreaks of pertussis, measles, mumps, chickenpox, polio, and flu in vaccinated groups. The global level of pertussis coverage was 83% in 2012 – pretty darn good – but, still: Outbreaks. In fact, vaccinated people may spread infections they are recently inoculated against, as they shed viral and bacterial material from vaccines – just as occurs with wild type, naturally acquired infection. This has been documented for those recently vaccinated against pertussis, polio, flu, chickenpox, rotavirus, and measles.
Read the full article and bookmark Judy's site at Nutrition Care for Children.
I received an Amber Alert message last week on my mobile phone. It startled me as the message was accompanied with a loud, blaring alarm. I was parked at Ronan’s school waiting for him to be dismissed when this happened. I looked my phone as a text message popped up containing more information. My heart sank. A young girl was missing, and authorities were quickly on the move to find her.
My network sends these sort of messages out as needed, which I welcome. What better way to get the word out to the masses: Hey, citizens! Someone’s life is in danger. A child, a national treasure, someone who matters, and who makes a difference in the world, has been snatched. Keep your eyes open, and call the police ASAP if you have any information.
Fortunately, for this abducted child, the ordeal was over quickly. She was found safe and returned to her family. I imagine many hugs, huge sighs of relief and several high fives were shared by those who assisted in the girl’s rescue. It’s reassuring that a person’s life was worth the intense effort and extra manpower required to find her.
Being so quickly notified of this young girl’s endangerment got me thinking. What if there was something similar for our children? I, for one, would have preferred an ear-piercing alarm rather than the quiet, don’t-be-so-worried responses and the wait-it-out suggestions I received.
By Dan Olmsted
Can it be? Is it already time to wrangle over the re-re-authorization of the Combating Autism Act, the billion-dollar (give or take) boondoggle that was supposed to marshal the government's war on autism but instead has shillied and shallied and dillied and dallied? Sadly, the only thing that has redoubled is not the government effort, but the autism rate.
It is indeed CAA time. The funding expires at the end of September -- the government's fiscal year -- unless it is renewed. The way things work in Washington, where I live and which I used to cover, heavy negotiations will be going on in April and May, which is practically next month.
The glaring beacon of mediocrity that exemplifies the feds' futile efforts is, of course, the Interagency Autism Coordinating Committee, which, besides not coordinating anything, spends most of its time avoiding the fact that vaccines are driving the autism epidemic. Tom Insel, whom I've called a feckless factotum and called on to resign many moons ago, seems to be hearing voices from on high (HHS? The White House?) and keeps things merrily spinning in circles.
Don't take my word for it. The Government Accounting Office recently concluded that "84 percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funding by federal agencies [mostly, let's face it, by Insel's NIH] from fiscal years 2008 through 2012, 1,018 projects [most of them!] were potentially duplicative because the projects were categorized to the same objectives in the IACC strategic plan."
In its own self-serving report to Congress, the NIH's Office of Autism Research Coordination blathered on about how, "In the time since the enactment of the CAA, CDC has built critical infrastructure to further advance understanding of ASD and has seen these efforts come to fruition."
No, the CDC has continued to front-load the childhood vaccine schedule with immune-inflaming shots that are the primary trigger of the autism epidemic; the NIH has funded stupid and studiously avoidant studies; and HHS, of which both are a part, has continued to deep-six the vaccine "court" evidence that vaccine injury is clearly linked to autism.
Heck of a job, Tommy.
Given all that, what can we really expect from a renewed CAA? Well, as I said, it's almost March 1 -- meteorological spring -- and hope springs eternal. What would you, dear reader, like to see embedded in the next few hundred million dollars of government spending on the worsening autism epidemic?
Here are the highlights from the latest VOR newsletter. To subscribe please fill out this form. Thank you.
Table of Contents
1. Facebook 500! Help VOR reach 500 Likes
2. 2014 Speaker Feature: Meet Kathy Brown, President of the Developmental Disabilities Nurses Association
Just a Good Editorial on Person-First Language
3. The Problem with Person-First Language: What’s Wrong with This Picture?
In the News
4. Kentucky: Adult abuse registry bill heads to House
5. National: Too many intellectually disabled are still excluded from the world of work, study says
Quality in the Community?
6. Washington, D.C.: 25 charged in largest Medicaid fraud bust in D.C. history, feds say
Quotable, by Samuel R. Bagenstos
Royal Caribbean International is First Cruise Line to Receive Certification
“Autism Friendly” Certification Ensures Cruise Ships’ Services, Venues and Amenities are Accessible to Guests with Autism and other Developmental Disabilities
Shelton, CT (February 20, 2014) ̶̶ Autism on the Seas™ (AotS), the leading travel organization catering to vacationers with autism and other developmental disabilities, today announced the introduction of the travel industry’s first “Autism Friendly” Certification Standard & Training Program for cruise lines. Royal Caribbean International is the first cruise line to receive certification from Autism on the Seas, thereby assisting with reasonable accommodations for inclusion and participation by guests with autism and developmental disabilities. Effective immediately, Royal Caribbean’s entire fleet is comprised of Bronze Level certified “Autism Friendly” ships. The fleet is expected to achieve Silver Level certification by the end of 2014.
“Offering cruise lines a Standard that includes training for their staff to effectively accommodate the needs of the growing and underserved autism community marks a turning point in the travel and cruise industry,” says Mike Sobbell, founder and president of Autism on the Seas. “We are very proud to bring Royal Caribbean on as our first “Autism Friendly” Cruise Line Certified partner. Royal Caribbean’s involvement and initiative to accommodate this community is to be commended, and will open the door towards filling the gap for special needs families seeking a vacation designed for their wide range of unique requirements.”
"We are honored to be the first cruise line to achieve Autism Friendly certification," said Lisa Lutoff-Perlo, executive vice president of Operations for Royal Caribbean International. "Royal Caribbean is a global leader in taking guests to unforgettable destinations and is committed to catering to vacationers of all abilities. We have worked with Autism on the Seas for more than seven years to better provide accessible cruise vacation options for families with autism."
About Autism on the Seas Cruise Line “Autism Friendly” Certification Standard & Training
Autism on the Seas Cruise Line Autism Friendly Certification Standard is designed as a guideline for cruise lines to ensure their pre-cruise and onboard services, venues and amenities are accessible for inclusion and participation by the autism and developmental disability community. The reasonable accommodations to comply with this Standard are, and can be, customized to each cruise line’s policies, procedures and ships, to ensure sustainability and effectiveness in retaining the scope and intent of the certification. Certifications are awarded by individual ship. Depending on the certification level, ships may be required to conform to seven categories, including:
Feb 20, 2014, SFARI: Social skills, contentment evade adults with autism
Feb 20, 2014, Everett (WA) Herald Net: Website spews Facebook health myths
Feb 20, 2014: Pittsburgh Post-Gazette: Training to help police respond to people with autism
Feb 20, 2014 : Echo-Pilot Greencastle PA: Police and Parents Share Autism Stories
By Tim Welsh
One of the most frequent questions I get being on the front lines of social media is " My child just got a diagnosis of autism, now what?" This is where I offer a disclaimer. If you are still fragile and faint of heart you may want to pass on reading this post. I am happy to consult with you in a more gentle and private way if you give me a call, direct message me via twitter or Facebook . This blog is intended to give those that have already strapped on their warrior armor and seriously ready to go to battle this is the boot camp overview.
I would much rather somebody tell me the truth day one, than string me along. We often say you meet one individual with autism, you have seen one version of autism. The same goes for treatments, services and support plans. There is one major wrench though, your geographic location plays a huge role in what is available and how to proceed. I am going to give you the mile high version as I see it. I would love for others to jump in and correct me if they feel something is incorrect or missing.
Once your loved one gets the diagnosis you will be pointed in a few different directions. Within the medical system you will be directed towards therapy at the lowest and most basic levels. They will offer up vitamins, minimal speech, occupational , and maybe physical therapy. This of course depends on your state laws and your personal insurance program. The educational system will offer some basic instruction. Usually this is along the lines of PEC (Picture exchange communication system) Discrete trial training, Floortime, Play or modified ABA (Applied Behavioral Analysis)
When you pose the question to the general public. You will first be pointed towards Autism Speaks. They offer a 100 day kit which outlines what to expect and the major national service organizations. If you are lucky in residing in a geographic location supported by these systems there may be resources available to your family. I have reviewed a number of versions of the kit, little applied to rural areas, and very little focus is provided on getting started with biomedical intervention.
Feb 20, 2014, Forbes: On Autism, Environmental Toxicants, And Bias
Feb 19, 2014, DigitalJournal.com: Vaccine Industry Watchdog Obtains CDC Documents That Show Statistically Significant Risks of Autism Associated with Vaccine Preservative Thimerosal
Feb 19, 2014, Houston Chronicle: State-by-state look at how many parents aren’t vaccinating their children
By Teresa Conrick
From 1984 until 2003, I worked in two, private, for-profit, psychiatric hospitals. During those years, I witnessed situations that were indelibly sad and some that made me excruciatingly angry. I stayed on year after year, as I always felt that I was making a difference, that my relationship with the teens that I helped in a school setting was both positive and influential in their journey towards discharge. I must say that too many of the doctors and staff treated the families and the patients poorly. There was the one psychiatrist who called some of his child patients, “FLK,” ( Funny Looking Kids), and then the staffings, where parents were bombarded with off-label medications to be trialed on their child, and of course the never-ending talk behind the families, of blame, dysfunction and other Freudian musings. I could take it no longer, especially as AUTISM began to appear on more charts beginning about 2001. My own daughter, who regressed into an autism diagnosis by age three, was vividly on my mind. The many medical symptoms, labs, GI issues, allergies and immune symptom abnormalities that she was experiencing were never discussed in any of the charts of those psychiatric, hospitalized patients. I had to get out of that environment as it was so wrong on so many levels.
It is worth repeating, and I will continue to do so to sound the alarm that in 1943, over seventy years ago, Dr. Leo Kanner, the psychiatrist that first started seeing these new and unique SYMPTOMS in children, had this to say --
“SINCE 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits - and, I hope, will eventually receive - a detailed consideration of its fascinating peculiarities”
What happened after that is unfortunate and heartbreaking. The “fascinating peculiarities” that Kanner described, the SYMPTOMS that the children exhibited, became the focus, and because they were “peculiar”, psychiatry dissected and savored them for years -- including present day. What also was ignored? :
• The timing of 1938 -- Why then?
• The MANY gastrointestinal issues and immune red flags of those first eleven children
The Use of Psychiatric Hospitalization for Symptoms In Autism?
“Engaging in self-injurious behavior (OR = 2.14), aggressive behavior (OR = 4.83), and being diagnosed with depression (OR = 2.48) or obsessive compulsive disorder (OR = 2.35) increased the odds of hospitalization.”
• “As seen in Fig. 3, aggression and self-injurious behavior were the most common chief complaints.”
• “Medication is commonly used to control aggression in children and adolescents in inpatient units….The use of atypical antipsychotics has expanded to treat a broad range of psychiatric diagnoses for children and adolescents despite the limited empirical evidence supporting their efficacy.”
• “Restraint methods have been associated with a significant number of client deaths in the United States. Some behavioural interventions have incorporated restraint as a consequence for aggression.”
These OXYMORON quotes are from actual research papers:
• “As with normal individuals, proper medical intervention will probably lead to the improvement of behavioral symptoms caused by acute or chronic medical conditions in individuals with ASD”
• “The unique needs of the ASD/ID population require specialized psychiatric programs that involve assessment of the “root causes” of the patient’s symptoms.”
• “No single biological or environmental cause of aggressive behaviour in people with autism or intellectual disability has been identified”http://www.wpanet.org/uploads/Education/Educational_Resources/autism-part4.pdf
Are There Biological or Environmental Causes of Aggressive Behavior Associated With an Autism Diagnosis?
There is MUCH research showing that the roots of aggression in autism are associated with PAIN and also immune dysfunction. Let’s look more closely at Gastrointestinal Issues - Immune Dysfunction - Chronic Infections:
Feb 18, 2014, Observer newspapers of Dutchess County (NY): Anderson Center for Autism celebrates a strong history
Feb 18, 2014, KY3 Springfield, MO: Researchers making progress in finding answers about autism
Feb 18, 2014, Fox News: Air pollution exposure may increase risk of autism, schizophrenia
That’s how long our current president has been in office. A lot has happened in that time. Some people like the changes that have come under this administration while others do not. I guess taking the good with the bad is part of politics. But I’m getting tired of the bad. Something that I don’t like, is that in the last 1,856 days, autism hasn’t decreased. In fact, since inauguration day 2009, the autism rate has jumped from 1 in 166 to 1 in 50.
What does that mean? It means more families are affected by autism today than ever before. It means that more children are facing a life-long disorder that negatively impacts their future. Every day is a day to overcome or to learn to live without. Every day our children fight to overcome struggles while living without necessary skills that can make those struggles go away.
Autism. I naïvely thought I may get a break from it. I thought I might get some down time with the holiday on Monday. But on Monday, when others took time to celebrate, we simply carried on where we left off Sunday night. Presidents’ Day was a regular day. Ronan had school. He later had therapy. As the day continued, we stuck to his routine. As much as we’d like a day off from autism, I appreciate his routine. Ronan does too. The routine, as well as other strategies we’ve put in place, secure Ronan’s safety. They also keep our lives and his health needs balanced. It takes a great amount of work, but when I focus my energy on those strategies for Ronan, things do get done.
I haven’t yet figured out a personal strategy to reach those in Washington, D.C. I’d love to sit down with someone who has the authority to finally do something pro-active about the rising rate of autism. I’d love to share our story with them and have them witness what a regular day looks like for Ronan—it would include an ugly side of autism, the side that national television commercials dare not broadcast. What he lives, and what we must balance for him, is no picnic. It takes no days off, and it often leaves us working both day and night.
Feb 17, 2014, HealthImpactNews.com: 58 Bills in 24 States Threatening Right to Refuse Vaccines
Feb 17, 2014, The Hill: Lawmaker: Stop putting kids in 'scream rooms'
Feb 17, 2014, Salt Lake City Tribune: Editorial: Utah legislators should require autism coverage
Feb 17, 2014, TIME Magazine: Galileo Galilei: Scientific Ignorance is Still With Us
I try to find ways to communicate parents, siblings, caregivers, extended family and individuals on the Autism Spectrum experience and feelings about ASD through examples and quotes. For years now, I have used the Hashtag #FAY Feel Autism Yet? to organize and highlight these quotes from around the world and share on social media. I think the Olympics gives us examples of how different our lives are. This blog will explore and discuss just one example of the hopes, fears, dreams and lives we lead using a sports analogy.
Shaun White is an amazing Multi medal winning Olympic athlete. For the majority of his career it has been said he has shown no fear. He participates in one of the newer Olympic events, snow boarding. He was sent to Sochi Russia to represent the United States and hopefully bring home two medals in 2014. The conditions and course were so extreme in one of his events that at about 24 hours before the event he pulled out and did not compete.
I have been thinking about this for a few days. Our lives take many unpredictable twists and turns. Some are more predictable and avoidable than others. Snow boarding is a young persons game. I do not presume to tell Shaun White how to live his life but as a snowboarder he is considered the OG ( old guard ) now. Others just like in the military, are young enough not to question the danger that may be lurking on the other side of the hill and will follow the order to charge.
Feb 17, 2014, Worcester (MA) Telegram & Gazette: Autism after 22
Feb 16, 2014, Sunday (UK) Times: Measles legacy of disgraced doctor
Feb 15, 2014, Santiago (Chile) Times: Special report: Vaccine law a battle between science and society
Feb 14. 2014, AutismDailyNewcast: Research on chimpanzees gives new insight into autism spectrum disorders
Feb 14, 2014, Fox News: Number of chemicals linked to autism and other disorders doubled in past 7 years, study shows
Feb 14, 2014, Toronto Star: Doctors fear kids' brain disorders tied to industrial chemicals
Feb 14, 2014. Salt Lake City Tribune: Utah autism treatment coverage bill clears first hurdle
Feb 14. 2014, Columbia (SC) State: New definition prompts almost 1,000 to seek autism-related services from SC
Feb 14, 2014, Salt Lake City Tribune: Utah couple’s dilemma: Sell house or skip autism therapy for sons?
Feb 13, 2014, KDLT-TV Sioux Falls, SD: Autism Bill To Help Cover Cost Of Therapy (VIDEO)
Feb 13, 2014, KWGN-TV Denver, CO: Conference to raise awareness of autism
Feb 13, 2014, WJAC-TV Dubois, PA: Program to help GPS track autistic children
Feb 13, 2014, WEAR-TV Pensacola, FL: Firefighters trained on dealing with Autistic children in dangerous situations
Feb 13, 2014, Georgetown (University) Voice: In an ideal world, there would be a vaccination against ignorance