"Prehistoric Autism Neurodiversity"
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Study Time

Study timeBy Cathy Jameson

In our ever-growing world where the science can never be settled, we need passionate and dedicated scientists.  Scientists are known to spend a great deal of time studying and learning from the natural world around us.  Their discoveries are based on their observations and experimentation and then presented for others to see.  Data is important, but one thing I sometimes see being forgotten in the field is recognition of the actual human being who has contributed to scientific findings and statistics.  I was reminded of that after catching up on reading a few studies last week.  One in particular, which was about using social media to help parents understand and improve their attitudes about vaccines, brought me right back to the time when I began to question vaccines, my doctor, and Science. 

Before I had kids, and even after having them, I would never have said that I had an attitude about vaccines.  Back then, I honestly never thought too long about them.  I just knew I wanted them without any sort of hesitation.  But, after observing my son fall ill post-vaccination, I started having doubts.  As I began to question them, I realized that I didn’t have enough information beyond what the doctor was telling me.  Since she only offered positive vaccine thoughts and a very strong opinion supporting them, I set out to find the facts I wanted and needed.  Like parents today who also have questions, I had to learn how to look for unbiased information.  I had to learn how to discern what I heard from other people.  Putting emotions aside, I had to learn how to weigh what I was being told by the pediatrician and also factor in what my gut was telling me.  She said that they were necessary and would help my children be healthier.  But after seeing reactions while also learning that they were not required for school entry, I really wasn’t sure what I was being told about vaccines was completely true.  As she kept pushing them despite the problems Ronan was having, I became one of those parents who was “on the fence” about vaccines.  I needed more help.  But from where? 

I needed rock-solid Science.  Surely, that could help me. 

As a child, I never liked Science.  I didn’t hate it, I just didn’t appreciate it.  The sicker Ronan became, though, I was drawn toward it.  Spending countless hours at the library (think pre-internet days) and finding myself spending the most time searching for and reading books from the Science section, I was forced to learn more about topics I should’ve paid better attention to when I was in school.  Being the parent of a chronically-ill child, I’ve had to rely on Science as well as people in the medical community in order to support my son and his intense needs.  In the long run Science did help.  So did keeping my son, and what he was dealing with, forefront in my mind. 

In retrospect, that should’ve been proof enough.  But my naiveté kept me from seeing reality.  Plus, others, like our doctor, refused to see the human in front of them, too.  Eventually, I knew that I couldn’t discount what was happening right in front of me.  And when I discovered that other people elsewhere were reporting similar issues with their kids, I knew that I was onto something. 

I hadn’t yet found those other people but soon would. 

In those early days when I had gotten as far as library searches could take me, I began to use the internet.  Unsure of how to navigate it like I can today, I wasn’t always confident in what to look for.  Thankfully, I kept at it and explored all that I could.  What a treasure trove of information!  Even so, I wasn’t prepared for the rabbit hole I was about to walk into after a family member told me to check out something called a discussion board.  Tip toeing into one, I was overwhelmed, but I was also glad to discover that other people were asking the very same questions about vaccines that I also was.  Thank God for those early Yahoo! Group days. 

From what I remember from those groups, parents shared experiences and facts.  They posted providers’ input, recommendations, and credentials.  Existing research was distributed, dissected, and debated, too.  Those Yahoo! Groups might be considered prehistoric now, but that sort of social media, which dictionary.com states as websites and other online means of communication that are used by large groups of people to share information and to develop social and professional contacts, gave many of us exactly what we needed: the confidence to keep educating ourselves. 

Those early days gave us a chance to sort through valuable information that our doctors wouldn’t discuss.  Not only that, it gave us much-needed support and the chance for friendships that, for some, are still going strong. 

Fast forward to today. 

Discussion boards still exist.  Doctors are still pushing vaccines.  And parents are still pressured to go against their instincts. 

Vax out of fear

Photo Source: A share on vactruth’s FB page.

Years ago, we didn’t so much create attitudes about vaccines, we paved a new path for our children and their health.  That included knowing how to make rock-solid informed medical decisions.  It also gave us strength to create a more public platform about vaccines where parents were invited to ask more, share more, and speak up more.  On the one hand, being able to do that has been a blessing.  On the other, when the ill-informed media gets involved, it can sometimes feel like a curse. 

With how the media has twisted our viewpoints and frequently blames vaccine-educated parents for all sorts of things, vaccines have become what the media likes to call a hot topic.  They don’t have to be a hot topic, the source of a heated debated, or the cause of a broken friendship.  But, over the years, that’s what I’ve seen happen.  The more vaccine headlines we see in the news, the more convoluted the once-private topic has become.  Worse, the hit pieces that make the rounds on social media tend to gloss over important information, like the fact that all vaccines come with risk, that adverse reactions do happen, and that our government has a vaccine injury compensation program set up for those who are harmed by vaccines.  

More than anything, I think it’s the media who fuels the controversy surrounding them.  They have more than enough outlets—print, radio, television, and online sources, where their vaccine news and views can be cycled in whenever and practically wherever they want.  Just when one vaccine story dies, another one surfaces.  This week, it was this study about vaccine attitudes and how using social media can improve them.  The week before it was about the waning pertussis vaccines and that we should go ahead and get an extra booster anyway even though they aren’t working.  If I was a betting woman, I’d say that next week’s hot topic will be all about the ebola vaccine.  I can’t say for sure what it’ll really be about, but mark my words.  At some point, a vaccine story will be cycled through next week’s news. 

Vax existI don’t always go back in time in my head to when things were much different than they are today for Ronan, but it’s commentary like this from that vaccine attitude piece that keeps me writing about a topic I’d never thought I’d ever write about:    

“Vaccinating children has become a hot topic in the last decade, as arguments often play out on social media, leaving some parents unsure and doctors scrambling to get them the right information.”

The right information is there.  But with how the media continues to feed the public their one-sided vaccine articles and such, parents will remain unsure.  Contributing to that uncertainty are those doctors who refuse to fully inform worried parents.  And because parents are oftentimes under pressure to make a decision right there in the exam room, parents will likely continue to ignore their instinct as well.  Ignoring one’s instinct—I’ve been there, done that, and oh, how I don’t care for how that panned out. 

For those who’d rather avoid what I did not, read.  Research.  Look up what you need to look up.  Question everything, and never be afraid to ask for help.  If you’re not getting help from the person in front of you, go elsewhere.  The Scientific information is out there.  While you search, remember this, too.  Facts about vaccines can’t just come from a scientific book, journal, or study.  While professional input has its place, credible information can also come from those who didn’t make it on the panel of vaccine experts that your medical provider is telling you to listen to.  Information could very well come from a human, including from the parent of a child who was injured post-vaccination. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Grace Green

Autism Mom, if your genetic councilor has known since 2014 that autism is not genetic why was she giving you counseling? They don't mind contradicting themselves do they?

Beleaguered Autism Mom

I asked a genetic counselor why no one could tell me my son's "genetic" cause of autism so I could join the right support group. She said "your son has had appropriate testing and his 'autism' can't be fixed by diet". She also said "we have known since 2014 that it is not genetic. There are over a dozen known diseases with autism-like symptoms - maybe hundreds. Take your son to a university-affiliated doctor and find out which one". She predicts that fifty years from now, autism will no longer be a diagnosis.
So I agree with the quote attributed to Abraham Lincoln in this country - "you can fool all of the people some of the time, and you can fool some of the people all of the time; but you can’t fool all the people all the time." I do believe there are doctors who do not want to be in the fool category.

go Trump

Our present American news media secures 90% of their funding from the drug companies and the billions of dollars of political campaign ads placed every two years. They are also very well paid for “talking about FLU shots” and other medical issues, trying to “sound like the news” when it is simply another commercial

Six corporations own nearly all of the news media networks in the United States. Freedom of the press has been gone for over a decade.

The 7th amendment to the US Constitution does not apply to American infants & toddlers. They want to move Gardasil to the infant schedule to avoid the “freedom of those who can talk” about the shot...

The internet is a pretty good spying machine which goes far beyond what any typical user can control. However without the internet most parents would still simply have to believe what the American news media tells them, which is that Autism is a “new genetic disease” and there is no cause for concern.

susan welch

Thank you, Cathy, for this excellent post.

Gayle

Our level of trust in government, the justice system, politicians, religion, the media has been eroded by scandals and dishonesty on all levels in today's world. Our secure level of trust in all of these is gone.

David m burd

Cathy, excellent Post, and it drags up my personal experience (pre-internet) of going to the National Library of Medicine on the grounds of NIH in Bethesda, Md to search medical topics in their vast archives of hundreds of millions of references. It's probable I 'rubbed shoulders' with Dan Olmsted in the Library reading room long before he founded Age of Autism.

Starting about 15 years ago these Journal archives (and also new publishings) were scanned into a virtual library resource and became available via the Internet. Thus, anybody, like parents, so motivated could with persistence find almost countless medical journal papers on the extreme dangers of today's vaccines along with "pro-vaccine" papers/studies that were clearly biased and virtually all written by Federal Govt. Agencies and/or Pharma paid doctors and so-called scientists who were already vested in the pro-vaccine religion (what else to call it?).

So, today and thanks to you and the other AoA founders and numerous other Allied websites (and the myriad journal papers web-accessed via the National Library of Medicine), the public can in fact discover the terrible lie that "vaccines are safe and effective" - a lie that keeps wrecking every year millions of American families and scores of millions of families around the world. Thanks again, Cathy.

bob moffit

"More than anything, I think it’s the media who fuels the controversy surrounding them."

I have come to believe the greatest threat to our country is the collapse of a free and independent press ... and ... vaccine coverage is just ONE of the issues where the main-stream media exercises great influence in the Court of Public Opinion .. simply by exercising their greatest power .. that power being the power to IGNORE whatever information THEY choose to deny providing the people.

On the subject of vaccines .. our mainstream media is nothing but an echo chamber .. denying any and all opposing views .. simply regurgitating whatever "information" they receive from public health officials, pharmaceutical industry advertisers, medical organizations and academic university research studies .. all bought and paid for in some manner or another .. by the extraordinarily wealthy vaccine industry.

The sorry state of our media is bad enough .. but .. I cannot think of a single institution in our country that I have the same trust and confidence that I had forty or so years ago. Justice system? Religion? Military? Politicians? Education? NOT ONE.

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