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On Media: Autism Speaks, Beating "Awareness" to Death

Fish_on_bikeBy Anne Dachel

In a press release Wednesday, it was reported that the Advertising Council, in partnership with Autism Speaks, would be launching a new series of public service advertisements (PSAs)  featuring Grammy award-winning recording artist Toni Braxton and her son, Diezel.  The announcement said that "the purpose of these ads would would be to raise awareness about autism and to urge parents to learn the early warning signs of this developmental disorder, now diagnosed in one in every 150 children."

On the video, Toni Braxton tells us what the odds are of having an autistic child.  She urges us to learn the signs of autism and visit the Autism Speaks website. (HERE)

Autism Speaks has been promoting awareness since its beginning in 2005, holding walks throughout the U.S. and getting publicity in the national media.  They joined with the United Nations representative from Qatar HERE announcing the first World Autism Awareness Day on April 2, 2008.   

Autism Speaks often compares autism to other health issues involving children in terms of rates and funding:
Leukemia: Affects 1 in 25,000 / Funding: $310 million
Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
Autism: Affects 1 in 150 / Funding: $15 million

To the general pubic, raising awareness sounds important.  It tells us that this is something we need to care about, but it doesn't make autism seem like crisis.  It's no real call for action.  Awareness sounds a lot like acceptance. 

What happens next?  There are now hundreds of thousands of parents painfully aware of autism.  Why isn't there a huge cry for answers?  When does autism become a national health care crisis?  How bad do the numbers have to get? 

Why isn't the medical community following up on the countless reports that bio-medical interventions can recover autistic kids?

How long will we be hearing that one in 150 children has autism?  As alarming as that figure is, reality is far worse.  The CDC gave us that rate in Feb. 2007, but it was based on studies of eight year olds done back in 2002 and 2000.  Those children are now 14 and 16 years old.  This can hardly be considered a true picture of the autism disaster.  In Minnesota, the recognized rate is one in every 81 kids.  Others put the national average rate at one in every 67 children.  Among the Somali immigrants in Minneapolis, the autism rate for American-born Somali children is one in every 28 kids.  Despite these numbers, health officials still promote the claim that there's been no real increase, just "better diagnosing."

Findings by Michael Ganz at Harvard make a chilling prediction of the future economic impact of autism.  Ganz projects that it will cost about $3.2 million to take care of ONE autistic person over his or her lifetime.  His findings are felt by others to be a gross underestimate of the eventual autism price tag. (HERE.)

How long can we afford to simply raise awareness?  We will soon have a generation of young, disabled adults to care for, in addition to the children being diagnosed with autism.  This is an economic nightmare that will continue to get worse and worse.  In the face of this disaster, why are we only calling for awareness?

The words of Laura Bono of the National Autism Association are a grim forecast for the future: "As those children reach adulthood, the U.S. is ill-equipped to care for them. Not only do we not have enough services for adults now, the light at the end of the tunnel is a train. Frankly, we don't know what we're going to do."   
--
Anne Dachel is Media Editor of Age of Autism.

Comments

Cherry Sperlin Misra

Look at the effect of the endless media articles about the importance of EARLY DIAGNOSIS !! (conductor the drums please!). For those who have no autistic child, this implies one thing- If you just diagnose the child early , you can get therapy and all will be well.
I have a friend to whom I had often spoken about autism. One day she actually saw an autistic child at her clients house. She was clearly shocked and asked me when he would improve or change. I informed her that that probably wont happen at all and she was really surprised. She said "Oh, I thought they got better!" This is the subtle psychological effect of all the therapy, awareness and early diagnosis talk. This truly represents a challenge for us- How do we get people to REALLY understand what autism means? And one person here has brought up the very important point- How do we get people to look beyond what their doctor tells them?
Occasionally the idea has been posted on AoA that people are only concerned about disorders which they think could happen to them ! This may be a clue to getting people interested in autism - That is- presenting it as something that could happen to anyone.
Regarding statistics of autism incidence- Just look at the numbers for the Somalis. What does one in 28 tell you- It tells you that any public health doctor ought to be able to go out there and study the history of those children and in a few weeks time tell us the cause of autism and save us many many millions of dollars and many years of research. Isnt there even one public health employee who can get Alice(the autistic) out of Wonderland ? How much longer are these highly educated people going to go on saying that the emperor is wearing beautiful clothes?

Chris

Great analogy, Kim. Perfect.

And I'll elaborate on that. Not only does your doctor tell you to go ahead and plan your funeral, when you ask about any kind of treatment options, he tells you that you need to get therapy because by not accepting and embracing your breast cancer, you are not "accepting yourself for who you are".

You know, that breast cancer is a part of you. Let's not try to find a cure for cancer, let's celebrate it! Diversity, people!

Anne Dachel

Great points Kim! And I'm sure the doctor who failed to focus on the cancer would happily prescribe all kinds of pain meds with deadly sick effects as you got sicker and sicker.

Anne Dachel
Media editor

Stagmom

Imagine the same scenario for breast cancer.

"Examine your breasts monthly. If you feel a lump, it could be cancer. Early diagnosis can save your life." All true. So you find a lump, you go to your doctor, he hems and haws and tells you many women have lumps in their breasts. Go home. The lump grows and gets painful. You go back to the doctor. He says many lumps grow and get painful before they fix themselves. Go home. You feel a lump in your throat and your stomach hurts. He go to the doctor. He diagnoses cancer and then tells you, "Now go out an create a treatment plan for yourself and you should probably call a funeral home. There's no cure for your cancer. You'll have to pay for much of the treatment you find yourself. See me again in 6-12 months."

Sound familiar? Awareness? Feh.... TACA, GR, NAA, A1, SM, ARI many local autism groups, whether biomed or educational or both are LIGHTYEARS ahead of mere awareness.

Keep your awareness, we'll provide us action.


Ben's Dad

Clearly there are people who need to know more about autism, but does this PSA do that? Does the punch line of 1:150 odds really scare anyone? Does the dominance of this message water down a discussion that has advanced beyond awareness? I am not attacking Toni Braxton because I appreciate her work and I am sure that someone else wrote it, but my other issue with this PSA is that comparing the odds of an illness to the odds of divahood comes off as distractingly self absorbed. Its just a poor and vacant concept. The public good obligation that gave rise to PSA's demands more substance. The parents, friends and family who pour their resources into AS are not looking to fund the building of a pyramid of awareness. They want to end this thing.

I went on the AS (multi million $...) website as the PSA suggests and read the tag line – “its time to listen” – what exactly does that mean from this organization, one that Offit does not appear to single out for criticism? I went to a number of other advocacy websites and saw words like fight, hope, and cure. I saw an appeal for urgency.

John Stone – I think your reference to the ideological burden of autism is an important one. Awareness and listening imply nothing else can or needs to be done and provides some comfort to those who stop there. A focus that stops at being merely aware does undercut the other A's – Advocate, Analyze, take Action and ultimately Avoid. When that is accomplished, then we can all rest on our AwareneSS.

The apparent need for awareness and self motivated early diagnosis just highlights that it is too easy for doctors to miss at risk kids. If identification of warning signs by parents is necessary to provoke a proper evaluation, how can you attribute the autism epidemic solely to better diagnosis, especially before the age of awareness? The Somalis immigrants in Minnesota apparently lacked awareness of autism, yet are seeing rates closer to 1:28 according to school records. How do you dismiss an epidemic of uneven regional and subgroup ratios to better diagnosis when you see higher rates in those who lack awareness?

Sue

Just want to say to Chris, that while yes there are folks out there who are blindly obedient to the vaccine schedule and deaf to all reports of problems, and also unable to comprehend or sympathize with the real difficulties of parents of autistic kids, and even rude in real life, I also think it is very possible that some of the "parents" in these groups you are talking about might be paid listserv/comment board trolls. Having had the wool pulled over my eyes for some time by Quackwatch, (see www.quackpotwatch.org if you haven't already), I now view all listserv and comment board posts, especially those that are rude and disparaging towards those who question vaccine safety, with some suspicion. Not all are who they say or claim to be on the internet.

Christy

You have to consider the poorer counties within the United States. Rural areas where people don't have or don't watch that much national television. Awareness is sorely needed for these areas where finding answers is much harder.

John Stone

Just to make a fundamental point about the way "awareness" cuts the ground from under our feet. The ideological burden of this is that if the experts did not go around diagnosing it the problem might almost go unnoticed - of course, did do, on their account, for generations. So, it is no wonder that people don't take it seriously - and Autism Speaks is just fostering disdain and indifference.

Chris

I hear you Julia @@. IMO, I always liked the debate boards better on BBC also. They might have gotten heated from time to time, but at least 90 percent of the posters on them had a decent helping of brains and tact. The birth boards were exactly the opposite.

I just read yet another post about how "I would rather have a HEALTHY autistic kid than a kid dead from rubella" (rolls eyes). I wish these airheaded morons knew just how UNHEALTHY so many autistic children are - racked with yeast infections, immune deficiencies, etc. etc. But no, thanks to PBS showing nothing but adult autistic savants they have no real clue. And they wouldn't unless it happened to them.

christine

Chris,
I don't blame you for lashing out at those know it all "good mommies" who do everything their doctors tell them to. When I was a first time mom at 24 I always followed my pediatrician's instructions like a good girl. My 13 year old son has Autism. While my 11 year old daughter is NT as a toddler and young child she got strep throat, ear infections and even pneumonia. I now have a 2 1/2 year old daughter. She has never been vaccinated and she has only been sick once. She had a virus 2 weeks ago. I didn't take her to the doctor and I only give her homeopathic remedies. I nurse her(something else for those without knowledge or understanding to judge me for) and I give her clean, healthy food. Her immune system is strong. After a week she was running wild again. My older children had both been on antibiotics by her age. I believe the whole vaccination program is just a giant experiment on our children. Disease cannot be eradicated. Viruses mutate! This idea of herd immunity is not truly feasible. When our children are born we see beatiful new souls. The CDC sees them as germ carriers that need to be neutralized. Anyone with half of a brain has to realize that giving a hep B shot to a baby who is only hours old is unnecessary and unsafe!

Mary

Powerful post Chris. I remember when I knew little about autism. As I took my son for his sedated hearing test, I prayed that he had a hearing problem and not autism. Anything but autism. I feared what I did not understand. I still don't like the diagnosis, but it's becoming less painful.

Because I love my son unconditionally, and he has autism, I now know having autism is nothing to be ashamed of. This allows me to accept that I might be on the spectrum myself in some small ways (something I would have been defiant against previously). Healing my son is leading me towards my own recovery.

I don't know how Moms put themselves through the torture of commenting on those message boards. Everyone seems to have tunnel vision and comments from their own perspective, which doesn't apply to others. I no longer participate in those neurotypical parenting boards. There is such lack of respect and understanding. I don't need to voluntarily add stress to my life.

I loved the Toni Braxton PSA. I don't think we can overdo spreading awareness at all. The more we openly talk about autism, and the more people understand just how many people this affects, the better for us all.

Julia C.

Wow Chris! Those birth boards on Babycenter are unbelievable, aren't they? I could never stomach them. The vacuous, mean-spirited, mainstream crap that everyone posted made me want to tear my hair out every time. The debate boards were much better, and attracted much more intelligent types.
I have not encountered people like this in real life very much. I guess most of my friends and family know better than to go there with me. I do have a couple of friends that I have spoken to about vaccines, and even though they vaguely understand my feelings, they still don't really get it. Just yesterday my friend told me she had taken her son in for a flu shot. Apparently, his doctor recommended it because he has seasonal asthma. I didn't have the heart to tell her it was ineffective or ask if she even requested thimerisol-free. I just bit my tongue. Poor kid.

Twyla

Chris -
What awful comments from those other moms! I can't believe anyone would be so judgemental! They have no f-ing idea what they are talking about!!

Anonymous

Garbo -
Regarding not being able to cut through denial... My family lives on the other side of the country, but we have always been very close. I often forward emails about vaccines and autism. I even bought some of them DK's book Evidence of Harm. So it really floored me to hear that my nephew who has developed asthma received a flu shot, and when I asked if it had thimerosal in it my brother and sister-in-law didn't know (which means it probably did). My nephew also tends to have trouble fighting off cold viruses etc.

When I tried to explain the importance of avoiding thimerosal, their response was that they would ask their pediatrician about it.

My parents, too, who have various health issues, received flu shots and when I talked about thimerosal (and about whether the flu shot is even necessary or effective) they too said that they would ask their doctor about it.

So frustating -- we are up against a unified medical establishment, and how can our advice outweigh what people hear from the CDC and FDA and AAP and NPR and NYT and their own doctors?

Cherry Sperlin Misra

Oh, if only autism were an infectious disease- we wouldnt be in our current pickle- trying desperately to educate people about autism . You know this when you look at Zimbabwe today. Some hundreds of people have died of cholera and western leaders are calling for the president of Zimbabwe to "step down" Yet , with a million or more autistic kids in the U.S. we dont see anybody stepping down.

Regarding the claim that in the past ,doctors failed to recognize autism and it was therefore not diagnosed as often as it is today, Dr. Stephanie Cave has made the excellent point that in earlier years, if a child had suddenly regressed and stopped communicating " We would have called it SOMETHING!"

Shauna @ Together In Autism

In response to...
Posted by: aware already | December 12, 2008 at 05:26 PM
"I wish there was a website dedicated to sharing the details of everyone’s story."
------------------------------------------
AoA viewers,
My site togetherinautism.org has been taking not only stories of recovery, autism journey stories, but stories of injury as well. Pictures are welcome. Anyone wanting to share their story. Please submit them to togetherinautism@aol.com. I am taking submissions for my radio program as well. If you are an advocate, parent, physician, ect. and want your story heard, please do not hesitate to contact me as we have various options for you to be heard. Our best to you and your loved ones...

Shauna-Founder
Together In Autism
www.togetherinautism.org
togetherinautism@aol.com

Cindy

What kills me is that they keep taking in millions of dollars -- for WHAT exactly?

Don't these corporations see that their money is being wasted?? We need to make them AWARE that AS IS WASTING MONEY that could be going to research -- like, oh, mitochondrial disease and its association with autism??

Patrick

Autism Speaks lost direction in what awareness means.

Few people know what autism IS. They know what an autistic child looks like (speech issues, flapping, lining toys up etc...), but not what causes these issues. The general public knows autism is so prevalent we can't wrap our minds around it. The public has just enough information to induce fear. The epidemic is scary enough to throw a lot of money towards in hopes of making the increase stop.

Fear is reduced with knowledge. The unknown (what is autism?) IS scary. If the public knew biologically what autism was and that there were cures for many of the symptoms, autism would not be looked upon as hopeless. The public would also be outraged that a child with this condition would go without treatment from their Doctors.

We would be dealing with a more sympathetic public that feels an urgency for treatment or prevention for the underlying causes. There would be a demand for immediate research into biomedical ways to help each child.

It is a shame the public's money goes into an organization that has lost hope.

I do feel AS is worried about losing support ($$$) from the public. It is hard to keep showing the huge numbers AS has profited without any research progress.

Amber

Excellent, stagmom...

Thank God the ambulances get there early!

Jeff Ransom

To Chris great post.

To Julie Swenson: your post, got me thinking.
"Perhaps we could launch a campaign using teachers with decades of first-hand knowledge that today's ASD numbers are far, far greater than they were years ago would be useful? It might help dispel the 'better diagnosis' myth. Just a thought".

Here is my ideal, the autism community could develop a comprehensive study that all (or most all) would respect, of vaccinated & non-vaccinated children, overall health, including autism, etc, etc.

The question is, how many would we need to study and how much would it cost per child? Would 20,000 children, be enough? Half vaccinated & half non-vaccinated, say it cost $1000.00 per child, could we if we all, worked together get 20,000 people to give $1000.00 for this study, using Julie Swenson's ideal, of older teachers talking about 30, 20, 10, years ago & now autism rates in schools, a TV campaign asking people or a group of people to sponsor a child, or maybe 10 children. We could say, we have been trying to get the Government to do this for years but due to lobbyist we could not get the Government to do the right thing.

Considering what all Lyn Redwood has been going through at the IACC Meeting it looks like this maybe the only way to get this study done.

http://www.ageofautism.com/2008/12/iacc-meeting-fr.html

Chris

Well, I can say that I certainly thought autism would never happen to me because we didn't have it in our family, either. Not a trace. But I never would have spoken so nastily to someone whose child DID have autism the way I see so many other people who are not living with it think they have the right to do. I am truly shocked at the lack of compassion for mothers of autistic children and other people of non-autistic children thinking they have ANY right to make such horrible statements. I'm not saying that I want pity, but geez louise, what ever happened to a little bit of empathy, compassion, and maybe just a little of "well, I don't UNDERSTAND exactly how you feel because I'm not LIVING it, but I don't judge you for your decisions" sentiment. That is all I have ever really asked.

I will admit that I finally lashed out so viciously in return once to a hurtful comment that I seriously thought I was going to get thrown off of Babycenter. I had had enough of trying to explain where I was coming from that I finally turned the tables on them and said something incredibly nasty and cruel right back.

There was a mom on my youngest child's birth board whose son had a definite, within-one-day regression after his MMR vaccine, and her pediatrician AGREED with her that it triggered his regression! I seriously hurt more for this woman than I did for myself at some of the comments I was reading, a doctor who was a first-time mother actually told this woman that "at least if my child gets autism I'll love her for who she is instead of trying to blame "The Man" for all my troubles the way YOU do". The comment that finally did me in was the one about "Well, even if vaccines are causing autism that's okay because it's not like autism kills you and most kids with it learn to talk anyway". It was THAT remark that I finally flew off the handle at. The whole "greater good" sentiment. I angrily informed that woman that no, not every autistic child grows up to be a high-functioning Temple Grandin, that my daughter is five years old, nonverbal, still in diapers, and did not get a good night's sleep for three years straight because of night terrors. I then said an incredibly horrible thing - I told her that if her child were to ever become autistic, it would serve her right and I hope that you get the same flippant disregard shown to your child and that it tears your heart out the way it does mine.

Well, yes, it was a nasty thing to say but I do not care. I am so sick of my child's suffering and struggles being trivialized by the rest of society. That other mother actually e-mailed me and thanked me for having the balls to say what she has wanted to say out loud for a LONG time.

Well, then of course they all started a thread about me, saying that I wished autism on the whole birth board, a few of them actually said they wished they knew where I lived so they could come beat me up, that they felt incredibly sorry for my daughter and that I obviously did not love her or see her as a blessing, yada, yada, yada and scooby-dooby-doo. Another mom actually said "it's so sad that she's so ungrateful for the beautiful child God gave her, apparently she has never had the pain of having miscarriages before; I'll bet she'd have a better attitude about her child if she did". Umm, WRONG lady, I have had TWO miscarriages.

Why these people cannot read over what they post, place themselves in our shoes and think to themselves "would this hurt if it were said to me and I were in her shoes" before hitting the post button is beyond me. I figured it was time they got a little taste of their own medicine. But no, they always take your anger as a sign that you do not love your special child@@. Make me puke.

I actually don't understand why my remark made them as angry as it did, hey, before I made the remark, they were carrying on like autism was something "cool" or "easy to deal with, just a little extra school, no biggie, get over it". If they really believe in their hearts that autism is "not that big of a deal" then they shouldn't have even gotten angry at me saying it would serve them right if it happened to their child and no one showed them any compassion.

Yes, they want to tell themselves its "genetic", that "there is just more awareness" and that those of us who believe it is environmental or vaccine-induced are just a bunch of pathetic whiners looking for someone to blame so that they can go back to their comfortable little worlds of color-coordinated nurseries and elaborate first birthday parties that their child won't even remember. I lived in that world with my firstborn child. I certainly never say never anymore, that's for sure. We had absolutely no family history of autism, either.

What an unholy waste of money!

"Apparently AS operates at least 21 awareness locations. Wouldn't it be nice if these were actual research centers instead of PR portals?"

Can someone explain to me what the purpose of the awareness portals might be? Does AS think that the parents who have an ASD child need to be made aware their child has ASD? Does AS think the parents might not know this? Have we not heard moms complain that they have gone to the pediatrician time and again to say their child has a problem but have been dismissed by the doc saying Billy will catch up? If that's the case should the AAP not be doing this - telling the peds to get aware of ASD to inform the parents. But wait, shouldn't the peds know this already? Golly I am getting all confused over here. Who is supposed to be aware again? Oh right, the parents. Its always the parents isn't it? Its not like AS is going to do anything, or the AAP, or the pediatricians.....

Stagmom

I liken Autism Speaks incredible waste of money to watching thousands children get run over in the street and responding by buying hundreds of ambulances to cart them to the morgue.....

Garbo

The problem with "awareness", as so many have mentioned already, is that even when people are "aware" of autism, they are not REALLY aware of it unless it happens to them. And NONE of the extremely educated mommies that I know believes that it will ever happen to them. They think it's probably genetic and it doesn't run in their family so no worries. None of them wants to hear about vaccines causing problems. "It would be irresponsible not to vaccinate. Oh, don't let her scare you." This is the response I get when I try to tell them the truth that I live every day, so they can protect their toddler who stims on vacuum cleaners and their newborn who already has gastro problems. They. Don't. Want. To. Know. Awareness cannot begin to cut through Denial. Denial is far more powerful and comfortable. The ONLY thing that is going to change denial is for the truth to be recognized very publicly, with mountains of scientific data to back it up. And AS, and their pitiful little PR/fundraising campaign, is doing NOTHING to facilitate that. In fact, they often are at cross-purposes with the truth. Their raison d'etre has become the social fundraising circuit -- cocktail weenies and a Park Ave. address.

jen

Julie and Chris,you are right, there is no way that this increase in learning disabilities (whatever you want to call it-ADHD, Aspergers, autism, learning disabilities)is normal. I think it's all soft sign brain damage from environmental factors, one of which is vaccines. Those new young mothers are just scared and ever farther removed from the "dreaded diseases" like chicken pox or measles to even think about not getting the shots. Older people are much liklier to be open-minded about this possiblility of vaccines being harmful since they are not threatened by having to directly make the decision for their young. Today (I work as an ed-assistant at a public school) I saw a gang of public "stealth" nurses in our school and realized they were giving vaccinations to the students (mostly grade 5 hep b and dpt's). I felt like yelling at them to get the fuck away from my kids that I work with and leave them alone, but,of course, I didn't/couln't.

Chris

"I think this perception of autism is actually surprisingly common among many young moms. I have been posting various articles/research about the links between autism and vaccines on a mom's online group. Many of the moms respong by saying they would rather have a child with autism than with any of the current vaccine-preventable diseases they fear are much more terrible or life-threatening."

Rachel, I have seen this also on parenting message boards, particularly Babycenter. Other mothers seem to think that having an autistic child is "neat", that if you have an autistic child you must have this little savant that doesn't talk but sits there and writes concertos all day on the family piano. They do not really realize what is involved in caring for a severely autistic child. I remember before my first child was born I saw a video of a toddler with regressive autism screaming in pain and writhing around on the ground and he could not be comforted and it brought a chill to my heart and I remember thinking please God, don't ever do that to one of my kids. Why He let it happen to one of my kids anyway, I do not know.

When the whole vaccine debate always comes up on birth boards if there is an autism mom who says she is delaying or not doing vaccines because she has an autistic child and would rather take chances with the measles she always gets majorly bashed. I know, because I've been that mom and I've angrily stood up in defense of other mothers who've been torn up, down, and sideways by fellow moms who feel that way. I have had multiple mothers from parenting sites tell me that they feel sorry for my daughter, that I obviously do not love her, that by delaying my subsequent children's shots that in effect I'm saying that I would rather my daughter be dead, and on and on and on. Some of these sentiments have even come from nurses and doctors who are also mothers.

There are "mommy wars" in every single parenting choice on those stupid message boards. From spanking versus nonspanking, to breast versus formula, to natural birth versus give me the drugs, you get my drift. And now that there is an autism epidemic, there are "autism mommy wars". If you are one of those mothers who doesn't believe that vaccines EVER cause autism and that we are just more aware and it is all about genetics and you still worship Western Medicine like it is God, you are a "good autism mom". If you believe autism is sometimes tied to vaccines or environmental causes and you have hopes of someday healing your child, you are a "bad autism mom" in the eyes of the other mothers.

I am so damn sick of the mothers out there with normal lives and normal kids that only THINK they have real problems in their lives acting like we "bad autism mommies" are all just a bunch of irresponsible selfish parents who cannot accept that we are genetically flawed and that we hate our children because they do not act "normal". What a load of crap.

I also do not understand the hatred towards biomed autism moms from everyone. Before we started biomed, my daughter would get such horrid yeast infections that she dug in her crotch and dragged her bottom on the ground. She didn't sleep through the night for YEARS and is just now starting to get restful sleep. So in the eyes of all the other "normal moms", I'm a bad mom for treating her yeast and viral problems and now she isn't suffering? I do not understand this concept - that if I loved her, I would have just taken her to a traditional doctor and put her on mind-numbing drugs, but because we see a DAN doc and address her entire body, I don't "love her for who she is"?

People's thinking is insane. And parenting message boards are stupid. Like I said, it is usually a bunch of middle-class women who freak out over the stupidest problems, like not being able to decide what color to paint the nursery to crying because little Princess Caitlin's ice sculpture melted and her first birthday party was ruined for ever and ever and ever.

Like I said, I wish my problems were that trivial!

jim

How about we go back 4 years ago before Autism Speaks was formed and ask the general public to talk to us about autism. Many if not most who are not affected would have no clue! The bottom line is, whether you agree with the goals and objectives of the organization or not, Autism Speaks has and will continue to bring a voice and raise awareness for the autism community. We should be commending the organziation for its efforts and accomplishments. The employees, volunteers, sponsors and family's associated with the organization work and fight day in and day out for the lives of those affected by autism. This is something we should be thankful for, thankful for its research, advocacy, tools, resources and assistance. Thankful to know that a new parent may not have to have the same struggles with an initial diagnosis because there are now people and tools to help them along the way. People always have a need to criticize but how about taking a step back to when this all began and truly think about how far we have come. I commend Autism Speaks on their Ad Council campaign and mission as a whole and hope it continues far into the future.

aware already

I really dislike the AS commercials I have seen on TV. I feel that they only serve to generate anxiety, while sending a message that some sort of comfort can be found in recognizing the signs early enough. Recognizing the signs is not the end and in no way offers deliverance. These public service announcements are ineffective at truly making a difference in the autism epidemic. Parents want answers, even parents like me who have not yet been affected by autism.

What was effective in reaching me was reading true, detailed stories of regression, treatment, progress, and recovery. I have been able to make informed decisions about what my child is exposed to without feeling paralyzed into just watching for the signs to appear. In addition to AoA (which I thankfully check daily), I wish there was a website dedicated to sharing the details of everyone’s story. It’s the details that hit home to parents like me who have not yet been affected by autism. It’s watching a youtube video and realizing that your child was just like my child at 12 months. It’s knowing the words your child was saying were some of the same ones mine is saying. It’s knowing your child went in for same grouping of shots at 18 months that my child will be on schedule to get. It’s knowing the number of days or hours after the shots that the fevers began for your child. It’s knowing that the eye contact was lost, the response to his name was lost, and the words were lost instead of me thinking they were never there to begin with, as many outsiders tend to assume. It’s knowing that other than your child, you don’t have any other relatives with autism either...

Just because my baby smiles and coos, doesn’t mean I’m out of the woods and can tune out the AS psa’s after a fleeting feeling of sympathy for the people I don’t relate to on TV. It’s taking us by the shoulders and shaking us until we realize that regression happens. You will do this through your stories. Three professionals involved with my child, including my child’s pediatrician have indicated that they don’t really believe regression happens. Hearing about the laughter, the words, the smiles, the shots, the fevers, and the changes are compelling experiences that can never be denied, despite what the studies and our pediatricians tell us. Thank you so much for writing, posting comments, and continuing to reach people like me, who I believe have healthier children thanks to you.

Ben's Dad

Apparently AS operates at least 21 awareness locations. Wouldn't it be nice if these were actual research centers instead of PR portals? This mother ship organization is far too passive. I think that is one reason why Jenny McCarthy struck such a nerve. A soothing lullaby voice is great, but right now we need the roar of lioness.

Autism Speaks, 1930 S Alma School Rd Ste B202, Mesa, AZ 85210 Map, (480) 293-4373
Autism Speaks, 304 E St Ne, Washington, DC 20002 Map, (202) 544-4240
Autism Speaks, 1166 W Newport Center Dr, Deerfield Beach, FL 33442 Map, (954) 421-9997
Autism Speaks, 3301 Buckeye Rd, Atlanta, GA 30341 Map, (770) 451-0570
Autism Speaks, 85 School Ln, Watertown, MA 02472 Map, (617) 924-3300
Autism Speaks, 60 Brook Mill Ln, Chesterfield, MO 63017 Map, (314) 439-9074
Autism Speaks, 1121 Olivette Executive Pkwy, Saint Louis, MO 63132 Map, (314) 989-1003
Autism Speaks, 4530 Park Rd, Charlotte, NC 28209 Map, (704) 561-0003
Autism Speaks, 216 Haddon Ave, Collingswood, NJ 08108 Map, (856) 858-5400
Autism Speaks, 1060 State Rd, Princeton, NJ 08540 Map, (609) 924-7874
Autism Speaks, 2 Park Ave Rm 1100, New York, NY 10016 Map, (212) 252-8584
Autism Speaks, 168 Irving Ave, Port Chester, NY 10573 Map, (914) 934-5138
Autism Speaks, 181 Westchester Ave Ste 8, Port Chester, NY 10573 Map, (914) 935-1462
Autism Speaks, 4700 Rockside Rd, Independence, OH 44131 Map, (216) 573-0877
Autism Speaks, 8035 Mcknight Rd, Pittsburgh, PA 15237 Map, (412) 367-4571
Autism Speaks, 6380 Lyndon B Johnson Fwy, Dallas, TX 75240 Map, (972) 960-6228
Autism Speaks Inc, 380 Oakwood Rd, Huntington Station, NY 11746 Map, (631) 521-7853
Autism Speaks Inc, Port Charlotte, FL 33981, ,
Autism Speaks Inc., 5455 Wilshire Blvd, Los Angeles, CA 90036 Map, (323) 549-0500
Autism Speaks Nonprofit Corp, 1990 K St Nw, Washington, DC 20006 Map, (202) 955-3111
Autism Speaks Two, 2700 S River Rd Ste 203, Des Plaines, IL 60018 Map, (224) 567-8573

Rachel Ford

I don't think the Toni Braxton PSA is going to have a noticeable impact because it ends with a picture of Toni and her son in what looks like a normal, sweet, beautiful interaction. People don't get the gravity of the situation when it is presented like this. In fact, this may have the opposite effect by lulling people into thinking that autism is not really so bad, or maybe just conerning enough to keep the contributions coming but not really DO anything about it.

I think this perception of autism is actually surprisingly common among many young moms. I have been posting various articles/research about the links between autism and vaccines on a mom's online group. Many of the moms respong by saying they would rather have a child with autism than with any of the current vaccine-preventable diseases they fear are much more terrible or life-threatening.

Keith

"I think sometimes that we are so immersed in autism that we don't realize how many people, people with power, haven't the slightest interest or awareness of it. "

My point too John.

Again I'd state I think it's really important to remember this when writing/approaching politicians.

I knew of autism before this happened to our son because of a program I worked in. But I didnt really know autism till our son.

Unfortunately, my experience (our experiences) are bound to continue with the status quo public health agenda and pharmica profit engine.

John Gilmore

A few months ago I would have been skeptical of Autism Speaks launching yet another awareness campaign. everybody knows how serious this problem is, at least that is what I thought until recently. lately i have been having more than a few disturbing encounters with influential people with responsibilities directly related to autism who don't know anything at all about autism and don't seem that interested in learning anything either.

I have participated recently in a committee headed by a very powerful county executive here in New York who is on the shortlist to replace Hilary Clinton. He doesn't get it. Yesterday I spoke to the Director on a non-proft that runs 14 clinic's in poor areas of New York City. She doesn't get it either. I am not talking about vaccine issues. They don't get that autism is a huge public health catastrophe.

I think sometimes that we are so immersed in autism that we don't realize how many people, people with power, haven't the slightest interest or awareness of it.

On this issue I would have to say that there is a real need for continued awareness raising. It will be interesting to see what happens when the 1 in 150 number morphs into the 1 in 90 number which seems much closer to the mark these days. perhaps then people might pay attention.

The money AS spends on awareness raising is aloso that much less to be spent on the genetics mafia.

Angie

Another great read here at AOA, thank you!
I agree with just about everything we all have said here.
I believe that those who are not personally directly involved with someone on the Spectrum, they do not have any REAL ideas of the gravity of the situation...no matter how much information we share with them or no matter how much the WANT to understand, they just cant...ya know?

I think its a FANTASTIC idea for a Superbowl commercial, something simple and dramatic...a song in the background and either just pics of kids on the spectrum and then at the end have a simple statement like 'your child here' ......'autism, its out there waiting for your child, stand up and DO SOMETHING!'
Talk about fear tactic, if big pharma and AAP and ECBT can do it, why cant we? I know we are better than them and dont want to sink to their level, but I think its time we start playing 'the' game here..get the REAL dirt out there, how about a commercial with short clips of family's/parents sharing their worst poo/icky story...then at the end, something fearful like, 'whats your story'...oh, dont have a child with Autism? Just wait, you will' then give the REAL stats on Autism.

I surely dont mean that I want to 'get down to their level' and play dirty like them, because I want FACTS out there, not lies and 'tactics' ya know? Just the plain ole truth, put frankly and honestly...
I would give every penny i had if a commercial like that could be made and played during the superbowl..or heck, even on you tube, as long as it got millions of hits and promoted...

Anyway, that is my honest and dirty opinion on that...I believe 'awareness' is just a 'stall' tactic 'they' are using to push away from any treatment info/cause info...we need to stop helping people become 'aware' and start demanding that people 'get up and DO SOMETHING' about it, or it WILL happen in their family. Heck, even our family on both sides, doesnt have a clue, and surely they are thinking 'it wont happen to me, Angie is over the top, she is exaggerating/etc'..insteat of supporting or GETTING UP AND DOING SOMETHING, they think its 'over dx'd' and 'been around forever, no real increase/etc' all of they typical naive and hurtful things...which is directly caused by these 'awareness' campaigns rather than 'action calls'...
One more idea...what about a campaign that just doesnt call for action about Autism, but a campaign that calls to action all of the 'new' childhood 'epedemics' and educate the public that they are all related, the truth....get rid of one, you can get rid of the others..our family is a great example of that, my boys, before GFCF, bio med, BOTH were on 3 different allergy meds, and reflux meds, and Ethan was on 2 asthma meds and a 3x per day nebulizer as maintenance, and they were STILL SICK..now, they are on NONE of them and when they get a cold...its a 'normal' cold rather than it turning into pneumonia, flaring up the 'asthma' and collapsing a lung and a hospital trip....heck, ear infections, which once were every couple of weeks, even after tubes, are GONE! I know I dont have to tell you guys this, but we need to get this word out too, its not 'just' about AUTISM, its about HEALTH, and its all related...
ok, I really have to stop myself, or this post will get even longer and go more OT....

Basically, AMEN to all who have written comments, I couldnt agree more, and WISH I had your abilities to make clear, to the point, short, well written posts..LOL!
Angie
Mom to Ethan, Alex, and Megan

Julie Swenson

My worry is that the general public will continue to believe whatever the media tells them about autism: that it's strictly genetic and thanks to better diagnosis, it's able to be discovered far earlier than before. The average person is not going to spend hundreds of hours on Google (like we all did) to discover the real reasons behind the autism numbers- not unless they become part of the rapidly growing group of parents who realize everything they were told about vaccine is a lie because their children regressed after vaccines.

The public needs a swift kick in the arse.

This whole "better diagnosis" thing is pure BS. My aunt, who is now nearly 80, worked as a preschool and kindergarten teacher for many, many years. She told me that in her years of teaching, she never EVER saw the number of neurologically disabled children that are in schools now. I believe she said that she saw only one child that might have fit the criteria for ASD in all her years of teaching.

Perhaps we could launch a campaign using teachers with decades of first-hand knowledge that today's ASD numbers are far, far greater than they were years ago would be useful? It might help dispel the 'better diagnosis' myth. Just a thought.

K Fuller Yuba City

The general public still has the attitude that 1in150 kids is not *their* family. They believe that *their* family will remain untouched by Autism. Until everyone understands that this could happen to *their* child, grandchild, niece or nephew, they wont get it. Public awareness campaigns need to let people know that unless the cause is found and stopped it is only a matter of time until they are personally affected.
We would contribute to a Superbowl Ad Fund!

Twyla

I love Toni Braxton's music. And I thought she was great on "Dancing with the Stars" - to me she deserved to be one of the finalists.

I really appreciate that Toni is out there advocating for people with autism. And I have seen her speak out on behalf of biomedical causes and treatments for autism.

I know people within AS who work very hard to help out community, and I feel it important to acknowledge this even while castigating the leadership.

To some extent an awareness campaign is very important. Early treatment can make a big difference.

But sometimes I wonder whether some of the zeal for greater awareness/diagnosis is actually for the purpose of masking any decrease in autism caused by the decrease of thimerosal in vaccines. I don't believe that thimerosal is the only vaccine ingredient that can knock a baby's immune system, nervous system, and biochemistry off course. But I bet there are some people who feared that with less thimerosal we would see less autism and the connection would become too obvious.

It's odd to see the same people who are so sure that "better diagnosis" caused most of the increase from 1 in 10,000 to 1 in 150 (from about 1980 to 2000) insist that the rate not decreasing in recent years proves thimerosal's safety.

In addition, "awareness" is sometimes used to bolster the genetic theory, because any slight signs of introversion or slow development during the baby's first year are pointed to as evidence that autism existed before the MMR/V/DPT/flu vaccine onslaught (at age 15 or 18 months) caused seizures, regression, IBD, etc.

As Anne pointed out, what is also very unfortunate is that, at the same time as promoting awareness of autism, there is no effort to promote awareness of trying, for example, dietary intervention, or using a safer vaccine schedule.

Gatogorra

Lol. I thought that cartoon was from when Gloria Steinem married Batman's dad. The point is clear in any case.

And thanks for putting into words this itch I've had in the back of my mind. Can I say it? I hate these empty awareness campaigns. I don't see them as drawing more funds to the cause as a whole, just more funds to the organization throwing the awareness campaign. And as Katie Wright pointed out, that's a dead end considering who's running the show over at AS.

Sure, the campaign will alert hordes of new parents: Hear these symptoms? That's YOUR kid; you're in denial and his lining up objects, spinning and hand-flapping aren't cute traits. The campaign will also alert the acquaintances of families with kids with suspicious behavior so that the acquaintances can transform into annoying armchair experts and shove parents into taking action before these families have really explored all their options (and all the theories of cause, most importantly).

Once "aware", parents and effected kids are then thrown into the waiting nightmare of mostly inaccessible state programs and the machinery of for-profit allopathic "remedies". There's so much more these parents need to know and to see it unsaid is pretty tragic.

I don't feel my family has benefited from this partial "awareness" of the public. As they say, a little bit of knowledge is a dangerous thing. I'd rather get the mystified, perturbed stares from strangers when my kids melt down than the unbidden advice offered from buttinski's who once saw an awareness campaign ad and think they know everything about the genetic nature of autism and what we "have to" (the language these types always use) about it.

Braxton knows the truth and perhaps if people follow her thread, they'll come to her true opinions on the matter. Otherwise, they land in the As resource and half-truth quagmire.

Marni

I'd personally like to see the money made at various Autism events such as Walks, go to progressive action-oriented organizations, rather than to Autism Speaks. Or one big collective non-mainstream Autism organization. One that puts the funding toward researching vaccines and biomedical treatments. Period.

Is there one big biomed/alternative Autism organization that everyone could get behind, to rise up beside (not necessarily against, but possibly) Autism Speaks? Would it be Generation Rescue? I don't know.

I think we need a big umbrella organization that includes Katie Wright, David Kirby, and Jenny McCarthy, among many others.

Just a few thoughts to ponder...

Nora Brock

Please the only way to get help is by combining forces and fill in the blanks with your own campaign. You have Jenny McCarthy,Jim Carrey ,and their freinds in our camp. What about hitting back on youtube. Talk about the numbers let people know this is an epidemic. People have to be educated.
You cannot depend on others to do this for you. Our government covered up AIDS for years. My brother was a peace corps volunteer in what was formerely Zaire working in a hospital. Our government at the time knew that AIDS was present, but did not tell any of the staff. He was lucky enough to have not been infected, but others were not.
Let people know this is THE AGE OF AUTISM.
The numbers of children with autism are growing and the numbers of passionate family and friends are growing also. Utilize us, call us to action, organize a campaign and we will follow.

Steve

It is sad that this article has to be written, but I hope this is the beginning of a change of attitude toward the hackneyed "autism awareness" drone. That mantra is not about education, it is about political correctness.

I think we have to be careful about throwing the word "autism" out there over and over again without a qualification for how serious this disease is.

If you look at posts from any mainstream discussion board (the NPR Amanda Peet article is a great example) where "average Joes" with no connection to the autism crisis start weighing in, it’s obvious that there is a fairly common perception that this is just a label thrown around. Having not seen people with autism first hand, they do not realize that there is no such thing as a "mild" case of autism, and there is no way that you average finger flicking, shirt chewing, not potty trained at 5, echolalic child could not have somehow simply been "missed". They do not understand that autism is diagnosed in a very systematic and reasonably consistent way and is not a simply a pediatrician saying "yep, I think your kid has some sort of autism".

It certainly does help that you have a small group of reasonably well spoken and what appear to be fully functioning adults other than perhaps a touch of mental illness self-diagnosing themselves as "autistic".

I say screw "awareness". What we need is some REAL education to extinguish the ignorance and not this silly slogan that ultimately does more harm than good.


Tanners Dad

On the Vaccine Autism Issue 12/12/2008 at the Interagency Autism Coordinating Committee meeting today...

"What we know is that there is a diversity of views"

Alison Singer MBA Executive VP Autism Speaks

Keith

While I too am concerned about the money spent on "awareness" campaign I keep sensing an issue here and on the board - we assume everyone knows about and thinks autism is as important as we do.

I really don't see this as the case when I meet and talk with others. Autism, especially as an agenda our political leaders should be dealing with, is not something I think those without some kind of first or second hand knowledge ever think about or even consider as being important.

I think this has to be remembered when we are knocking on political doors - there are many others knocking on the same door who probably feel their need is the most important. Autism is but one ill in this country and many who don't have direct experience with it are really not going to be that aware or even care because of their own matters. So I think we need to keep that in mind overall and when approaching politicans.

Yes unfortunately most of us probably dont agree with AS's choices. Still, I think some element of awareness is important. Awareness gets people thinking and I really do believe that in the last 7 years that we have been dealing with this that I have seen a change among parents asking questions about potentials for autism especially in regards to vaccinations. If not, why would pharmica feel the need for million dollar PR campaigns contrary to that message?

If people start looking around to find out about autism they do somehow hear the vaccination message. What I would like to see is a more aggressive campaign of simply parents speaking out saying "this happened to my child". Could you imagine the effect of a Super Bowl ad that simply ran a string of short clips of real parents stating the truths they experienced?

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