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Thursday

Frontline, Autism and knotted Knickers at Age of Autism

I agree with Anne Dachel that the Frontline Show "The Vaccine War" is getting a great deal of reaction from the online autism community.   Just for Fun, Giggles etc I have corrected the rest of her write up to suit myself.
WARNING!!! CONTENT MAY BE UPSETTING, RUDE, SARCASTIC, HURTFUL ETC TO SOME READERS.  GET OVER IT.
Sarcasm by A Sodee

Tuesday night’s PBS Frontline show, “The Vaccine War,” is getting a lot of reaction within the autism community today.  Before watching Frontline, I’d heard enough about the show not to expect the typical false 'two sided' coverage. The very title was misleading.  The word “war” makes one think of a conflict with two sides.  That’s what PBS presented to the public and anyone with even a rudimentary understanding of the vaccine controversy could recognize that finally the media was getting it right.  There are indeed two sides to this battle-facts vs feelings. 

On their website, PBS promoted this show saying, “In The Vaccine War, FRONTLINE lays bare the science of vaccine safety and examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools -- including Facebook, YouTube and Twitter -- and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety.”

In truth, what we witnessed on PBS was an example of media  reporting of the facts.  Logical parents have grown weary of the mantra, “vaccines cause Autism, it's a conspiracy!.”  How many times has this issue been declared settled?  How many studies have been announced showing vaccines don’t have serious side effects like autism?  This debate shows no signs of stopping, despite the ardent efforts of shows like Frontline.

The emotional yet unfounded claims of parents were noted and dismissed on Frontline.

A growing number of parents say that vaccines can cause autism and that more studies need to be done.  Frontline reported that the science is in.  There’s no need for more research because multiple, large-scale studies from around the world have looked at the question and the answer is no. 

Ten of thousands of parents report that they feel that their children were normally developing until they were vaccinated.  These parents believe that their children regressed and became autistic due to vaccinations.  While discussing these parental concerns Paul Offit, MD, Anthony Fauci, MD and Eric Fombonne, MD explain that regression following vaccinations is mere coincidence-after a decade of extensive research scientific studies have ruled out vaccines as a cause of autism.

Some parents are worried about the number of vaccine in the schedule, another feeling based theory that is contrary to scientific findings.  Frontline had Melinda Wharton, MD, MPH in her Public Health Service uniform telling us about all the disease-preventing vaccines that are out there now.

The autism numbers have been portrayed as "skyrocketed coincidentally with the dramatic expansion of the vaccine schedule".  Frontline called autism “mysterious” and said it “appears” to have increased.

On their website, PBS included this interview with Montreal psychiatrist, Eric Fombonne.
In it Fombonne explained why autism is not an epidemic.

I think a better name for the show would have been, “The Anti-vaccine Movement: Misguided and Dangerous.” 

PBS portrayed parents as impassioned and determined but totally without any science on their side.  We see Jenny McCarthy, JB Handley, Barbara Loe Fisher, and Robert Kennedy Jr, along with a number of non-vaccinating parents.  To the general public the message was clear:  The medical community is lined up against them.  Their movement is based on fraudulent research (Andrew Wakefield) and celebrity leadership (Jenny McCarthy). 

Thank goodness Frontline did this show.

It is about time mainstream media gave publicity to these dangerous emotional based claims and allowed the experts to explain the facts.
The sad truth is that despite the best efforts of health officials and their few followers in the media, the public was not listening.  Some parents were scared.  Autistic children are more commonly diagnosed and no one can reasonably explain to hysterical parents who are determined that vaccines cause autism, where they’re  coming from. 

A lot of the Frontline show was about the power of the Internet.  Offit explained that people are getting phony information from watching YouTube videos for example.  The Internet is the dangerous influence, further explain some  health experts.  Fisher, McCarthy, and Handley use this forum to influence the public.  Parents are exempting their children and we’re losing herd immunity.  This has become a national health threat.

There was nothing new in what the trained experts had to say.  We were reminded that they’re focused saving lives.  Nothing was new from the other side either.  Parents continue to hang on to the false belief that vaccines can harm children.  It’s easy to imagine what PBS hoped to accomplish with this show. A logically balanced view of the so called 'debate'.

Frotnline thankfully did not use the shady tactics seen too many times:

They did not play into the conspiracy theory aimed at spreading fear and hatred.  The did not lend weight to the handful of emotional parents that 'just know, just feel' that autism was caused by vaccines.  Media sources like PBS demonstrated that this controversy is over.  Logic and facts (Scientific studies) have proven that vaccines do not cause autism.  Any logical clear thinking person can accept this.

There was another element that was thankfully missing from the PBS coverage.  The fake experts ranting that regardless of science, facts and evidence they know better!   PBS clearly demonstrated that while some parents are concerned about vaccine safety their concerns are emotion based and contrary to evidence.  PBS also demonstrated that none of  the well-credentialed scientists and doctors disagree with the main-stream medical community regardless of what the anti-fact profiteers would like us to believe.

 While PBS had  interviewed Jay Gordon, MD and Robert Sears, MD they were not included on the airing. Neither of them had any fact based information to share, perhaps.

The only way the story presented by Frontline works is if we just forget about hysterical ranting and face facts.  We have to understand that there’s been no real increase in autism  The vaccine schedule has not been upped to three times what it was in 1983.  The only epidemics we need to worry about are the ones caused by non-vaccinating parents.

The real problem is, HYSTERICAL PARENTS ARE NOT GOING AWAY.  They will continue to misprepresent statistics (example "One percent of children have it.  One in every 70 boys")  We’re talking about hundreds of logically impaired parents who will live long lives, many severely active online and totally misrepresenting and twisting facts

These parents may try to change the subject and ignore the reality of what’s happened to our children.  The resurgence of preventable disease, the stereotyping caused by misrepresenting children with autism, the harmful alternative medicine being practised on children by their misguided parents- but the public will hear more and more about autism everyday in the news.  Parents and self touted experts that are fear mongering with statements like this "As these affected children age into adulthood, they will cost billion of dollars each year for their support and care and their numbers will be replaced by another generation of children.  This is the scariest scenario I can image.  And no one is talking about it." will have their small followings of loons but very little clout.


Those that think Kate McMahon should have asked these two questions: What if vaccines turn out to be the cause of the autism epidemic?  What if all those questioning vaccine safety are right?- well persons who still are asking the questions we already have answers to can not take in the answers.  Vaccines have been proven to not cause autism.  The theory of an autism epidemic has been thoroughly debunked, the persons who claim vaccines are a conpiracy causing autism have been proven wrong.   

Perhaps now it is time for parents to learn acceptance for their children and advocate for better support and inclusion in schools and communities.

Sunday

Toys R Us supports Autism Speaks, wtf

Friday I had little man in Vancouver.  We had stopped at the mall to check out the toystore.
As a side note I told the clerk we should cure stupidity first...

1-800-Toysrus (1-800-869-7787).
Email us at customer-Service@toysrus.ca

Dear Sir(s) and Madame(s),

My name is Angela XXXXX.  On friday, April the 9th, my son and I purchased some items from the Toys R Us store in Metrotown Mall in Vancouver, BC.
As we were paying for our items, the clerk asked if I would like to donate $1 to support research for a cure for autism.My son, who happens to be autistic, was crushed.  He does not understand how people-who are supposedly better at social understanding than he is, can say such hurtful things.
Autism is not contagious, not a disease and not curable. To say it is devalues him as an individual.

Entering your website to obtain this email address and seeing the 'Autism Speaks" logo was dissapointing to say the least.

The general consensus in the Autistic Community (North America wide at least) is that Autism Speaks does NOT speak for autistics. 

Autism is not a curable disease. Straight from ACT ( Autism Community Training, a Canadian resource found at http://www.actcommunity.net/AI/FAQ.htm#Sec1Autism )
(begin quote)
----------------------------------------
What is Autism?
Autism is a developmental disability that typically appears during the first three
years of life. It is a neurobiological disorder that affects about 1 out of 500
individualsstar. Individuals with autism demonstrate characteristics in three areas:

. Difficulty forming social relationships
. Impaired understanding and use of language
. Restricted patterns of activities and interests

Although all three features must be present for a diagnosis of autism, the specific
behaviours exhibited can vary widely from person to person. Autism is considered a
spectrum disorder because the symptoms and characteristics can be present in
different combinations and at different levels of severity.

The disorders on the autism spectrum are:

. Autistic Disorder
. Asperger’s Disorder
. Rett’s Disorder
. Childhood Disintegrative Disorder
. Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).
--------------------------------
(end quote)

Autism speaks recently released a video that had Canada and USA Autistics and their families in an uproar.
The video itself gave autism its own entity that can sneak up and steal your child.  In it Autism Speaks insinuates that Autistics are 'lost' 'shadows' in need of curing -completely devaluing them as individuals.

Here is the transcript of Autism Speaks Video Release "I am Autism"

I am autism.

I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

I know where you live, and guess what? I live there too. I hover around all of you.

I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.

And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.

You have no cure for me. Your scientists don’t have the resources, and I relish their desperation.

Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism.

I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.

I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be.

I am autism.

You ignored me.

That was a mistake.


Talk to your own local autism community-do some research, please. 

As for myself and my son who mistakenly shopped at your store-we will be unable to patronize your business for as long as you are supportive of such a group.



I am also taking my screenshot of your website with its Autism Speaks Logo to my own autism websites and local community. 
For the purpose of disclosure, a copy of this email is also being posted online as well as printed and shared with my local community.
If you require contact information aside from email, let me know.
Sincerely,
Angela XXXXX

Some online Resources demonstrating how autistics feel about Autism Speaks

http://counteringageofautism.blogspot.com/2009/09/autism-speaks-should-learn-when-to-shut.html
http://www.aspiesforfreedom.com/showthread.php?tid=15482
http://www.change.org/autisticadvocacy
http://autisticbfh.blogspot.com/2006/07/autism-speaks-poisonous-ideas.html
http://autisticamoeba.wordpress.com/2010/03/30/why-autism-speaks-doesnt-speak-for-me/
http://www.nowpublic.com/culture/autistic-people-protest-autism-speaks-walk-osu-columbus-oh
http://www.squidoo.com/autistics-speak-for-themselves
http://www.bonbongazette.com/2010/04/why-autism-speaks-doesnt-speak-for-me.html
http://www.dailykos.com/story/2007/5/19/223159/715
http://www.facebook.com/group.php?v=wall&gid=22231492801
http://leftbrainrightbrain.co.uk/2009/09/autism-speaks-media-campaigni-am-autism/

Friday

HURRAY! Autism Awareness Day!

There are so many good posts out there already:

Kim Wombles at Countering  talks about awareness and how even is this there is a 'divide' between those of us wanting to create awareness and acceptance and those who want to create an awareness of the need for a cure.
I agree with Kim-but more importantly SCIENCE shows Kim to be correct-autism is not a disease.  Screaming for a cure is akin to screaming for a cure for red hair.  Autism is genetic. 

HERE is another wonderfully enlightening post discussing bullying, language and the R word.

And, yes, there are many blogs hollering about the epidemic (woo) of 'autism on the rise (more woo).

But the long and short of it is that people with autism are just that-people.  They have the right to be loved, treated with respect and dignity and the right to live life to its fullest. 
This means they also have the right to accommodation where required, the right to programs as needed, the right to understanding and support and the right to independance.

Just like everyone else.

Regardless of your stance on autism (genetic vs mercury poisoning) all persons with autism have the right to happiness, the right to an education, the right to be themselves.

It was a tragic as a blue clear sky after days of rain

trag·e·dy (trj-d)Of course I can remember, more than a decade ago, watching my son and worrying. So many little things that each by themselves were nothing to be concerned about, yet when put together it seemed obvious, to me, that something was going on.

But not every moment of every day was filled with worry. There was so much joy and peace in my house. With Little Man only one year younger than Princess I had my hands full, true, yet I love my children. Thank Goodness for BB (Big Brother) who was always there to hand me a diaper, catch the Princess and rock Little Man when I needed the help. Princess loved Little Man so very much.

She loved him as she let him take the blame for the toilet paper incident.

She loved him when she dumped that 5 gallon pail of flour on his head. (Just as a side note to other parents out there-you can NOT wash flour out of hair. Water and Flour = Glue).

And I am sure she loved him when she decided to paint his fuzzy head with diaper cream too.

(You might have guessed that Princess was one of THOSE toddlers that gets into everything.)

Little man rarely got into mischief-and never on his own.

While I found watching him figure things out to be a fascinating pastime, I was concerned about his seeming disinterest in the people around him.

I talked to the health nurse, my doctor, my husband, my mother and my friends. Yet no one wanted to look at the whole picture-they all assured me that each of the behaviours I pointed out were so very typical. I was so tired of being told that children each develop and learn at their own rates. I was frustrated and in all honesty, worried too that maybe I really was imagining it all.

Looking back I realize that I was not explaining myself well and the feedback from family and doctors was well meaning. My family, friends and husband all love Little Man-just the way he is-which is a beautiful thing. Princess spoke for him-that could indeed explain the speech delay. Heck, there were days where I SWORE they had a secret language, just like twins.

My son did not look up at me when I spoke to him. He could hear me just fine-he would stop moving for a moment when I spoke, but he rarely would look at my face.

He did, however, like to lean back against me.

He did not initiate play with his sister and unless she made incredible effort to be part of his play he would not acknowledge her. He would only play with his trains. He threw incredible fits for no reason that we could discern-the first time he did this I thought he was having a seizure. He did not seem to react to tone of voice appropriately, or facial expressions. He walked on tiptoes and never did crawl. He had no interest in potty training, freaked if his hands got sticky, would not play in the sand box if it had any damp sand. He did not talk. He had a half dozen words until he was nearly five. Sometimes they were used in context, sometimes not. He rarely reacted to what was said to him. The sound of music brought on fits.

As a mom, of course I was worried. I had his hearing screened, his eyes tested (try those tests with a child that does not let you know that he understands!) When he was approaching 4 years I used his fascination with Thomas the Tank Engine to potty train him-it was incredibly simple yet he still wets the bed frequently.

When he started school the teachers did notice some difficulties. He received speech therapy (still does) and they recommended a psych-educational assessment. He refused to participate in circle time, gym, singing, dancing and various other activities. My days were spent in the classroom with him as temper tantrums were frequent. I waited for the psych-educational assessment and continued to teach my son coping skills.

Having the school teachers recognize that something was going on with my child was wonderful. More importantly, to me, was a parent I met who's son was also starting school that year. Her son was simular to mine in many ways. I pointed it out to her the one day with a flip comment like "Both our boys ignore the other kids, huh?"
She answered me with "My son is autistic too." I remember being startled. Autistic? Isn't that banging your head, flapping your hands and talking in a monotone?
I told her the truth, that I had no idea what was going on with my child-other than he was frustrated and struggled with things that other children his age seemed to have no problems with.

(Interestingly enough, our children took a shine to each other. )

That day marks the beginning of my education concerning autism. I remember how relieved I was to have a name for what was going on! Having another parent to talk to that had experienced all the same concerns was also an extremely wonderful experience.

Of course there were days and moments of worry, coping with behaviour I did not understand, dealing with people in public who also did not understand.

But it certainly was not a tragedy.
It was not a disaster.
No loss of life.
No devastation.
No disastrous event.
Heck there was no event-there was no one thing that happened where we could say AHA! That event there! That was AUTISM!

As for other mistaken beliefs I have come across in my own personal experience:

My son does have feelings, an incredibly sharp sense of humour and the ability to express compassion. And by the way? He heard you ask me that. He is not deaf either. I was amused when he asked me "Does it not show a lack of compassion to say such things?" in reference to your words.

My son does know right from wrong. And it is very rare that he will do something that he knows is wrong. If there is a rule he has been taught he follows it. And expects you to follow it. He will happily let you know if you are not following a rule-not to be mean, but rather because sharing what you know is the right thing to do.

While my son does need the safety of routine he does not start yelling and hiting his head (rainman referrence) if his routine is disrupted. There was a time when every seemingly minor change in his schedule did result in agitation (as in anything from needing to rub his hands over his side pants seem, over and over while humming softly to typical tantrum that all toddlers seem to throw from time to time)-yet this has lessoned over time.

My son can speak. Eloquently. His speech does lean toward more formal and slang is rarely used. In social situations it takes him longer to respond than a NT child might need. My child does not name-call, insult to hurt (although if it is a truth he will say it not understand why this truth might hurt feelings, ie 'please do not sit in that chair. That chair is not for fat people. Use this chair. This chair is safe for fat people') and he does not say things he does not mean. In twelve years he has lied to me FIVE times. Three of those were an attempt at sarcasm.

My son does not equal autism. He, like every other person on our planet, has his own combination of personality traits. He does have autism. He does process situations differently. If you met him you might not even notice.
(Depends on the day and what he was doing and the context of the situation you meet him in.)

My son does have a sense of humour. He has a very sharp sense of humour.

My son had to be directly taught and coached in social situations. He points out that there are rules for social sitations that NO ONE follows. That some of these rules require telling LIES.
He is right. Sometimes he simply does not find it important to 'fit in'. I have noticed that this happens when his NT peers are being...well... mean. My son does not bully. He does not crave popularity either-he will happily tell the popular child that their choice are incorrect and why.

My son does not see physical differences in people. He can not tell me if his classmates are white or purple. He does not notice speech impediments, or care if you are in a wheelchair.
Same with facial disfigurement, stims, twitches and any other such thing that a NT child might feel is a stigmatism. He classifies people as 'nice' 'not nice' 'my friend' and 'not my friend' as well as 'child', 'adult' and 'teenager'. Lately he is differentiating between 'boys' and 'girls'-mostly because one young lady has decided she will in fact by my sons girlfriend.

Yes my son does have behaviours and speech patterns you might find unusual. Feel free to ask him about them. He values people that are honest enough to ask. He will talk frankly about pacing in a circle. Some 'stims' he does not even seem to realize he does.

Little man is working on his own post.


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