Wired?
It's late and mostly quite. It's the time of day I like best. My boys are asleep. Teri is too. Some folks are morning people. I'm a night owl.
There was a recent article in Wired magazine about AutismOne. I'm guessing the magazine is looking for some official response or others may be wondering if we plan to respond. And the short answer is, no.
We have always attempted to stay above the fray. I would much prefer helping a mom, working on something positive or playing with my boys than addressing mainstream trivia.
We are going through an odd time in so-called mainstream journalism. Historically, it has been the print publications that devoted the time and resources to "get the story." TV gussied up the story, re-edited, and sold it sandwiched between ads. Print media is taking a page from its TV competitors by defining news as creating controversy.
With the advent of the Internet print publications seem to view us as the enemy (and by "we" I mean any website that does not primarily derive its income by charging consumers for information).
Print publications are going through a tough time looking to remain financially and intellectually relevant in a time that transitions between the past and the future.
Print publications are well aware of what happened to the music industry - an industry that self-destructed in 5 years when its business model was challenged - and are desperately clinging to any model that will keep them afloat until a "killer" ap is discovered that will provide long-term viability and growth. The killer ap will probably be subscription aps on iPhones, Blackberries, Twitter, Facebook, and their own websites that deliver the publication as a digital product.
Still, it's hard as a publisher with newsprint on your hands to move away from a model that took decades to establish and perfect to the unknown. Technology changes quickly. People don't.
For our community the Internet has been a godsend and will only get better over the coming years.
By the way, my younger boy, Ian, had his triennial IEP today and he is making remarkable progress. I'm going to go kiss him and then go to bed.
- Ed Arranga's blog
- Login or register to post comments
AutismOne Radio
Michael, Deb and I are pleased and proud to support the Community of those who care for and love boys and girls on "The Spectrum" by being part of AutismOne Radio. We have endured countless drivels of meaningless diatribe in a vane attempt to convince us that what we were doing to help Michael recover was ill conceived and without merit. We couldn't give up, We Didn't Give Up!, We Don't Give Up!!!
When I log on to the new AutismOne site, I am proud that we have contributed, if even in a small way, to this marvelous living resource for helping people recover their loved ones. Michael, Deb and I are committed to doing whatever we can do to draw and encourage people to find AutismOne and then, by finding it, give another person on the Spectrum a better chance at recovery.
"For our community the
"For our community the Internet has been a godsend and will only get better over the coming years" Ed Arranga. I think Ed is a godsend!!!
My 9500th tweet dedicated to AutismOne Thank You ED
Here is my 9500th tweet Dedicated to www.AutismOne.org My goals are 1,000,000 Retweets 100,000 tweets 10,000 followers 1,000 Groups United 100 Senators on Same Page 10 Commandments Followed 1 Answer to Autism
"For our community the Internet has been a godsend and will only get better over the coming years" Ed www.AutismOne.org #FAY #Autism #UWAC
#FAY is Fee Autism Yet
#Autism Is a Mystery and we need more answers now!
#UWAC Is Unity Within Autism Community
Thanks ED
TannersDad Tim Welsh
Follow me on Twitter @TannersDad
First, thanks for the
First, thanks for the support. Second, I'd like to clarify something that may have come across as ambiguous at best.
My statement, “I would much prefer helping a mom, working on something positive or playing with my boys than addressing mainstream trivia,” may seem to convey a sense of non-engagement and nothing could be further from the truth.
My idea of engagement is to do it in the most productive manner possible. To build something that helps families that is measurable, meaningful, sustainable, and growable. I am not interested in the negative side of the conversation. The exception to this would be in a court of law that is by design adversarial.
In the court of public opinion engagement means building a better conference. Then it’s not my voice it’s the voice of 130 experts engaged in a constructive conversation.
Without giving too much away we plan on adding a track to train advocates. We help train practitioners, we train attorneys - it seems only fitting we train parents, too.
Some will take exception and I would be glad to meet. I live in Fullerton, California. I can’t travel too far from home but would be willing to drive a reasonable distance. Plus, I am in Chicago for a week every year and am available to talk.
It’s late and my guard is down. Wait until you see what we have lined up for next year. Talk about engaging! It’s engaging the way a 600-lb gorilla is.
Sign me up
I would be eager to learn how to be an effective Autism Advocate. I have been at this for almost 8 years now and have a lot to learn. Also I would be happy to help facilitate a discussion on this topic in Chicago next year at Autism One. You are right our public front must be solid. We are not "Hysterical Parents".
TannersDad Tim Welsh Autism Advocate
Nice comment about Ed from a fb friend I wanted to share
Irma Canfield says I am right there with you, THANK GOD for Ed! Many of us parents find the need to develop strong advocacy skills in order to obtain medical and/or educational services that best meet the need of our individuals under the AU spectrum or related disorders. When a young adult w/a disAbility is aging out of the school system, us parents will need to research the types & quality of programs & services that will best meet our individuals needs. This is critical time when the parent's advocacy skills will once again be required. Thank you ED for all you do bringing forth such a wealth of resource information through Autism One within every arena.
Maybe, it's good Big Pharma
Maybe, it's good Big Pharma is attacking Ed and AutismOne. I sense fear!! Now,I will go in for the kill in vaccine court. Yeah Baby!!
Faith, Love & Hope,
Interesting attack, however I
Interesting attack, however I have absolutely nothing to do with BigPharma. I'm simply a person who values quality scientific information and critical thinking.
Scientific information
Huronhome, I've posted an article here http://www.autismone.org/content/bibliography-science-regarding-treatmen...
Some of the references should touch upon mechanisms that would have bearing on questions concerning metabolism, susceptibility, etc. Of course, there is additional, more recent research. Some of this includes the study published in Neurotoxicology, the leading scientific journal in its field, which cited brain damage in newborn monkeys given the hepatitis B vaccine containing the mercury preservative thimerosal. Additionally, researchers from Stony Brook University published a research abstract for an epidemiological study in Annals of Epidemiology that revealed findings suggesting that U.S. male newborns vaccinated with hepatitis B vaccine had a three-fold greater risk of autism spectrum disorders.
Addendum
By the way, congrats to Ian (and Ed) on the IEP. Remarkable progress does not happen by chance; it results from hard work by both parent and child.
Ditto Wade
Good job Ed and Teri on Ian... nite nite Ed!
I'm proud of Ed and Autism One
It's doubtful that huronhome has ever been to an Autism One Conference, as anyone who has done so knows that a lot of time is devoted to discussing topics other than whether vaccines are the major cause of the epidemic (is huronhome even willing to conceded there is an epidemic?). To be sure, there are sessions devoted to the medical, legal and political issue of vaccines, but there's a lot of medical information that has nothing to do with vaccines. Has huronhome ever attended any of the sessions dealing with educational issues? Has he/she ever attended any of the sessions discussing the latest developments in traditional behavioral therapies?
As has been recently demonstrated, the organizationally held views of Autism One are not always shared by all of its constituents. The organization, however, provides the forum for discussion of a wide range of opinions -- even the opinions of huronhome. Unfortunately, huronhome forgets that opinions should be expressed with a degree of moral responsibility.
To imply that Autism One as an "anti-vaccinationist" organization, Ms. Wallace took the lazy route of spending a few minutes walking around the conference, and then getting spoon fed by Paul Offit. Huronhome shows the same intellectual laziness.
I join in the Waters' praise of Ed, Teri, and the entire Autism one organization.
HURONHOME
While Ed Arranga may choose to remain above the fray, (and rightfully so as far as I'm concerned) I will not. I am so sick and tired of shill idiots like huronhome and being a born fighter, I would just as soon "jump into the fray" and call morons out on their "scientific" statements. To think for one minute that something as invasive as vaccines (being as how they contain viruses, carcinogens and toxins which are facts that cannot be denied) are completely exonerated from any adverse reaction by complete and total simpletons like huronhome is what is so scary! How could people with this limited brain function actually make it to adulthood without stepping into traffic?
The FDA has stated that OTC cold medicines should not be given to children under two for fear of adverse reactions! I have an allergic reaction if I drink grape juice for God's sake! So to say that vaccines do not cause reactions simply show these idiots for what they are. In fact you idiot, the Federal government also tends to disagree with you, since they have conceded hundreds of cases stating that vaccines HAVE caused autism. It just sickens me that there is a mindset out there that still kling to obvious flawed science. I will gladly volunteer to do the injections if Huronhome would like to prove Paul Offit right. Let's do the 10,000 vaccines in one day idiot. Until then, perhaps you should rejoin your propaganda sites that make up the bulk of your idiotic groupthink, and allow the adults to handle this.
Let's do 100,000 vaccinations
It's unfortunate that you resort to personal attacks on my character instead of attempting to refute my claims concerning the overall safety and efficacy of vaccinations. Calling me an "idiot" does nothing to bolster your argument, and degrades you post to the level of name-calling.
The arguments in your post attempt to equate food allergies and the recommendations not to give OTC cold medications to young children with the risk associated to trace quantities of chemicals contained in vaccines, including your claim that vaccines contain carcinogens. What recognized NTP/IARC carcinogens are you referring to?
I won't respond to any more of your character attacks and assertions ofther than this: If Paul Ofitt gives the OK, I'd be more than happy to be administered any amount of vaccines he would state is safe. I'd trust a scientific expert such as Offit over a graduate of "Google Universtity" any day of the week.
Respect on the site
Huronhome, I think Curt's reaction was to the disrespectful tone in your original post, which preceded the disrespectful tone in his post. Personally, I'm not pleased with the level of disrespect in either of the posts. As long as everybody is being sincere, being diligent about "doing their homework," and everything is first and foremost said and done altruistically, then we should be able to keep everything on a respectful level in an honest discussion.
There is another blogger who has posted information on this site who is in favor of vaccines and actually partially includes sentiments expressed by you. However, the information was presented in a respectful manner.
Parents want some really basic and reasonable things for their children: these include clean and safe food, water, and biologics, and accountability on the part of commerce and governmental entities in ensuring these. In the discussions about vaccines, even mainstream practitioners and public health and governmental entities admit that there is some risk as evidenced by their words and legislative actions. While there exists risk in any medical procedure, Americans' human and civil rights must ensure the principles of informed consent and choice.
With regard to Paul Offit: he is not infallible. I interviewed him in person at an AAP convention on live radio. He remarked about chelation being dangerous because a boy named Tariq had passed. Of course, we mourn this. However, Paul neglected to mention this being due to a medical error where the child was given Disodium EDTA instead of Calcium Disodium EDTA. This represents an iatrogenic artifact, just like what happens every day in American hospitals, with mainsteam doctors, pharmacies, etc. I commented on Paul Offit's remark immediately, following up with a comment to him about Vioxx, at which point he dropped that train of thought.
Wired Magazine
Of course a blogger on the Autism One website won't answer any of the scientific facts detailed in the Wired magazine article An Epidemic of Fear as published in the November, 2009 issue. Instead of answering the primary criticism leveled at Autism One in the article (that the organization insists that too many vaccines given too soon cause autism), Mr. Arranga prefers to insist that Autism One has "always attempted to stay above the fray".
This is a convenient shield to hide behind while an organization irresponsibly encourages parents not to fully vaccinate their children by featuring speakers at the recent Autism One conference in Chicago such as Barbara Joe Fisher who scream nonsense about children being "injured or killed by mandatory vaccinations" without a single solitary shred of scientifically recognized evidence or proof, or while that same organization gives the keynote speaker slot at the same conference to a celebrity (Jenny McCarthy, a well-known anti-vaccination advocate) instead of a recognized scientific authority on autism.
Mr. Arranga ends by intoning that "for our community, the internet has been a godsend." Perhaps Mr. Arranga might like to address the parents who have lost children to preventable diseases that opted not to vaccinate against those diseases after finding unsupported and unsubstantiated anti-vaccination information on the Autism One website. How much of a "godsend" would these parents believe the Autism One internet information has been for them?
Show Me The Science
www.fourteenstudies.org
Now I want to know why everyone is trying to scramble to cya. I have the science I need to prove to me what happened to my son when he recieved his vaccinations at the age of 20 months that caused his regression into autism. I have test results, video before and after, and the very mainstream doctor that administered the vaccines has stated to me that the vaccines caused his regression into autism. The doctor I mention attended Autism One last year and is researching for every patient the opportunities of safe health strategies. Why do both sides insist on cya. Why not study why our children have regressed? Why not study the differences between the children who have no adverse health events after vaccination and those who do. Why not study the recovered children, why not more research period? Explain to me why the new numbers from the CDC state 1 in 58 boys now have an autism spectrum disorder and when my son was diagnosed I did not even know what the word autism meant.
This is exactly why some people are so angry and frustrated and vent on sites such as this, when as parents of a child who was perfectly normal and healthy and then recieved vaccines and is no longer normal and healthy.. We want answers and are not getting them. Just my 2 cents.
huronhome
Hello Huronhome,
I read your post and I hope I can address some of your concerns. Fourteen years ago my husband and I opened our home to a baby girl who was born with Down syndrome. I wanted the best for this beautiful child, so besides our unwavering love for her I was determined to give her the best medical care I could. Our biological son was 10 years old at the time we opened our home and took in our new baby girl. Our son had been fully vaccinated with the routine schedule used at that time and we had no complications. In fact he was then, and continues to be now, a very healthy person. I had no reason to ever question the safety of vaccines, so I willingly took our daughter with Down syndrome to get her routine vaccines. It is a long story with many details that describes our experiences with her vaccinations. At the time, I totally believed the doctors when they explained away her complications to vaccines as being coincidental - after all, our son did not have these problems. With mounting coincidences, it soon reached the point where I would have been a fool to continue to believe in such an explanation for her troubles. I therefore embarked upon a search for why this child functions so differently than other children when vaccinated. I turned to the most reputable source I could find in my quest for understanding. This source happened to be the published medical literature. I am not an anti-vaccine parent, but I do believe parents need and deserve to have all the information about vaccines so that they can make an informed consent for their child. My search through the medical literature has brought me answers that explain all the “coincidences” in my child’s medical history.
I am truly thankful for Autism One allowing me to relate my findings to other parents who are likewise seeking out answers for their children. I have presented at the Autism One conferences on the topic of Down syndrome and vaccination for the last 3 years. NEVER has anyone at Autism One instructed me on what I should or should not say. They have NEVER censored my material or told me to only show negative things about vaccinations. It has been my experience that they have presented material at their conferences on a very wide base of information that includes so much more than just talk about vaccines. Sometimes I hear a speaker I agree with and other times I may disagree, and that is OK.
My sense about you is that you want to see the science behind some of the claims being made. There is science on what is known and then there is the information that should be known but is not being looked at. Therefore, I am giving you my personal invitation to listen to a free webinar I am doing called: Don't Look, Don't See: What Medical Literature Actually Reveals about Vaccinology.
This talk will give you plenty of what I think you are looking for; fact not opinion, and science not hearsay. This presentation is being given on November 23rd at 8:00 PM central time. You can sign up for it at this link: https://www2.gotomeeting.com/register/921922770
Here is brief description of what the talk will be about:
Parents are often told the adverse reaction their child has had to a vaccine is fully coincidental. This dedicated mother reveals the published scientific literature that supports the validity of her child’s multiple adverse reactions to vaccines. If you have been told “it is all a coincidence,” then this talk is for you. Topics to be covered include vaccine-associated ear infections, Strep, mitochondrial dysfunction, immune overload, childhood cancer and the effect of celiac disease upon hepatitis B vaccination.
Because I have now read the Wired magazine article along with the over 340 responses to the material contained therein, I will be specifically addressing some of the concerns brought up by the readers. The material I present will include the citations to the published medical journals so that you can obtain these for yourself and draw your own conclusions about what they are saying. Perhaps we will have the same interpretation of a study, but maybe not. At least you will come to know where some of us are coming from when we question the safety of our current vaccination program.
Respectfully,
Laurette Janak
Show us the science...
Dear Huronhome,
I am not going to criticize your comments, and I thank you for posting them. For the record, I used to think just like you. You see, I worked in the healthcare industry for over 20 years. I have been taught that vaccines save lives, and I still agree that they are important for diseases which we have no known cure such as polio. I had a normal healthy baby who was beginning to speak and had a vocabulary of about 25 words and smiled in every photo. Shortly after his 1 year checkup, which he received 8 vaccines, he lost eye contact and speech. He developed significant gastrointestinal distress, and could not sleep more than an hour at a time (even through the night). Doctors had no answers or explanations. We have spent the past 8 years trying to heal him, and our endurance and efforts have paid off because he is now free from many symptoms and can communicate. We have searched the entire world to find the best doctors and therapists. I know most of them by name. Autism One is not an anti-vaccine conference but a scientific and educational conference. Experts from each field are brought in to share the latest research.
You bring up some valid concerns, but they are ones that as parents we have all wrestled with. Not all autistic children have suffered an adverse vaccine reaction. Some were considered to be born with autism. There is heterogeneity among the different types of 'autisms' which most of us will tell you. Not all of our children are recovering, either, which is very sad.
I attended the 4th International Vaccine Conference organized by Barbara Loe Fischer. I can assure you, it was not an "anti-vaccine" conference because she encouraged both sides of the vaccine debate to be presented and it was. There were 44 states and over 11 countries present, and many physicians on both sides of this discussion who presented the science. Vaccine science is not perfect. In fact, what's more in question than 'whether or not to vaccinate' is 'should we be using a one-size-fits-all vaccine schedule' for all children? Some children, due to a genetic & neuro-immune predisposition cannot tolerate multiple environmental stressors at one time whether it is from an infection, a vaccine, or a toxin such as lead or mercury. This has been shown in the thousands of vaccine injury cases pending in Federal Vaccine Court at this time as well as three very well publicized cases last year.
Think about it this way. 1 in 3 Americans suffer an adverse drug reaction to a prescription drug during their lifetime. This has led to the very exciting and emerging field of pharmacogenetics. Our genetics determines the way we metabolize drugs. That has been proven. Look at P450 blood test for assessing drug metabolism. So why are we still adhering to the "one size fits all" vaccine schedule? When I have spoken to many pediatricians in the past few years, they themselves have expressed concern over this schedule and have opted to delay or stagger vaccine schedules especially in children with a family history of immune disorders.
The science and proof that vaccines are 100% safe does not exist. Individual safety studies have been performed, but the only study to date of all vaccines in the CDC schedule did show neurological regression in primates. Clearly, there is much more research that needs to be done in this area. Especially because there are 150+ vaccines in various stages of clinical trials as we speak. If we continue to expand the CDC childhood vaccine schedule, will be giving children 200 vaccines before their 2nd birthday? This is a critical time of ongoing development of the immune system, and we have not studied the neuro-inflammation that can occur at this young age.
I know my comments will likely not change your mind, but please know that many of us who have children on the spectrum are also scientists and we ARE looking at the science....hourly, daily, weekly. We are researching around the clock to find out how to help our children and we can tell you what studies have or have not been done. It's our new job as parents of an autistic child. I never thought my graduate studies in molecular genetics or immunology would someday help my child. All we are asking is "Show us the science...."
Thank God for Mr. Ed Arranga
I have a scientific facts for you Mr. Huronhome (if that is your real name)?? Here it is, my beautiful 9 year old red-headed daughter "Candace" who has regressive severe autism. Candy was talking, pointing and hitting all of her developmental milestones. I have video's of her doing this. Then with each vaccination she started losing all her skills.
Now, at 9 years old she is non-verbal and still in diapers!! That is all the recognized scientific authority I need to see. Also, why do you think the Government created vaccine court if vaccines are safe?? My daughter was vaccine injured and I will prove that in court!!
Now go back and tell your Big Pharma bosses to put that in their pipe and chock on it!! And, I also have to say "Thank God for Mr. Ed Arranga" and the great things AutismOne does for the autism community!! God Bless You!!
Faith, Love & Hope,
Wired Magazine
How much are you getting paid by Big Pharmas huronhome???
Your comments are pretty despicable...
Have you received your flu shots yet?
Flu vaccines
I received my seasonal flu vaccine yesterday, and am receiving the H1N1 vaccine today.
Best wishes
Well, huronhome, we wish the best for you. Desiree Jennings
(http://www.youtube.com/watch?v=E4MIm1mB7GM) and Melissa Ellingson
(http://www.kpho.com/video/21282473/index.html)
are not doing well at all after their flu shots. One of our aims here is to provide additional information that might not otherwise be available to the public from mainstream media sources but that could benefit certain individuals' health. Informed consent and choice are important principles in this discussion. No doubt, from your other posts, you have received information on both sides of the question and have made your choice. We wish the best for your health. Sincerely, Teri