Nancy Pelosi's Sarah Palin Moment

Good God in heaven - it's been a rough week for anyone who loves a person with autism. I'm rather fond of three girls with autism, my daughters Mia, Gianna and Bella.

Earlier this week, Nancy Pelosi excluded autism from H.R. 3200 the healthcare bill. You can read about that sharp stick in the eye over at Age of Autism. Way to go, Nanc, hope that new grand baby you toted around at your swearing in (kinda like Sarah Palin, doncha think?) is talking and pointing and able to have one formed poop a day instead of seventeen explosive, acidic bouts of diarrhea like some kids I know. I saw you surrounded by your grandchildren. So touching. Really. My mother would like to know why you threw her grandchildren under the bus.

On Friday the 17th, there is a major briefing on Captol Hill on the current state of autism research and treatment (HERE)courtesy of Reps. Carolyn Maloney (D, NY) and Christopher Smith (R, NJ) and featuring both David Kirby (original HuffPo blogger) and Mark Blaxill of SafeMinds. Only 39 of 158 members of the Coalition for Autism Research and Education were signed up to attend as of Tuesday. W-T-F?

Meanwhile, the government will spend $1,000,000,000 for a fast tracked (that's FDA shorthand for holy shit you got this to market how fast and did you bother to test it?) swine flu vaccine for a flu that as far as I can see, hasn't knocked out a small street in E. Elbow, Rhode Island, let alone reached pandemic proportions. I saw a headline this week, "27 Cadets with H1N1 - none hospitalized." Don't go getting all bat guano on me about the Swine Flu - that's not the point of this post. yes, we need to be prepared for an epidemic. And no I don't want children to die of a preventable disease. OK? The point is, that when the US Government feels there's a real (or perceived) threat, or at least an opportunity to accomplish some other goal, they can mobilize money and "stuff" reaaallly fast. Think Iraq war after 9/11 for the Republicans and now H1N1 "prevention" for the Democrats.

So it seems to me that all this autism "awareness" we've been talking about for so many years now hasn't done jack squat to convince our leaders that families are falling apart because of autism. Loved ones are suffering. Kids are creeping up to the end of school. You think turning 65 is scary? Try having a kid with autism about to turn 22 and age out of school - and there's nothing for him to do and no where for him to live. Now imagine you're turning 65 with a 40 year old adult with autism to care for all by your lonesome. Makes that colonoscopy you need every year look like a walk in the park, eh?

A few years back, I had the pleasure of meeting both David Kirby and Suzanne Wright (Founder of Autism Speaks) on the same day at an event in Boston. I asked Suzanne Wright a simple question: "Is Autism Speaks going to find out if we're creating autism in our kids?" (She answered, "yes" at the time, but I've since realized she is a figurehead there and not responsible for the research. Shame). I believe we are creating autism just as we are creating diabetes, nut allergies, cancer, asthma, MS and other chronic diseases.

Frankly, if you still believe autism is fully genetic and you're just "born that way" your head is either in the sand or up your ass. Or, if you've been at the beach recently, it may be up your sandy ass. Either way, if this is your belief, I suggest you stop applying for research grants. You're squandering precious resources that we need to prevent another generation of autism. Get the flurk out of the way. And then read Autism: It's the Environment, Not Just Doctors Diagnosing More Disease" from SFGate.

Autism awareness is not enough. In fact, it's really nothing, as has been proved by the disregard our leaders show toward people with autism. Of all ages.

I'd rather no one I know ever have heard of autism, if it meant my girls would have more treatments to hone in on a cure. Call me selfish, but I sure would like to hear my Bella say, "Hi, Mom. I'm hungry, could I have something to eat?" Or watch my Mia go to a movie with a group of friends. Or wonder how my Gianna is doing at sleep away camp, missing her every minute.

Of course, "cure" is a dirty word for autism. We live in a world where docs will give an 87 year old man a pill to get an erection. They routinely give chemo and radiation to patients with a next to zero prognosis of survival from rare cancers. Fifty and sixty year old women can give birth thanks to new fertility techniques. Heck, my 86 year old Dad was offered heart surgery to correct his heartbeat so he could live out his final years more comfortably. But parents are told, "Take your 3 year old home. He has autism. There is no cure. Get him therapy and call a group home." Unacceptable, friends. Un-freaking-acceptable.

I have a wishlist for autism. First, I want prevention. I don't want another family to go through the hell of struggling to help your precious child with autism. For those for whom we can not prevent autism, I want a cure. Meaning I want those kids to be able to function in the world. And for those for whom a cure is not possible, I want care. Meaningful, safe, dignified care.

It was a rough week for all of us who love someone with autism. What's next?

Comments

[autismnostrum]

That article on the California study was pretty alarmist. Even people who believed that autism was purely genetic could still argue that a huge increase in California is pretty easy to explain. Silicon Vally and lots of geeks having kids and thereby increasing the likelihood of having autistic children.

That said, we've certainly come a long way in ruling out one potential environmental factor. Vaccines. Let's move on to more productive research, shall we? And instead of jumping to conclusions on what causes or prevents autism or how to treat it, let's do some research there, too. I'm tired of seeing parents getting bamboozled by people and organizations that are just out to sell things. I'm tired of seeing parents torture their children with "treatments" they've deluded themselves into thinking work.

My son is currently enrolled in three university connected research studies. In all three cases, they confessed that they'd been having a really hard time finding volunteers. None of the studies actually involve anything painful, invasive, or unethical, and one just involves parents filling out surveys, but those studies have a hard time finding volunteers. If you really believe in autism research, it's time to put your money where your mouth is.

[LeEcole]

As a conservative, cancer patient, and parent of a child with Autism, I find this opinion piece counter productive. Insulting those like me is hardly going to present a unified front in legislating for Autism care, science, and funding.

[command67]

Kim, I am the parent of one autistic child, and I think we have had very different experiences with autism. A cure or a prevention is not something on my radar. Respect, tolerance and understanding by others is very much on the top of my list. Autism is not like cancer or polio. I don't want my son to be anything more than what he is. I just want him to be comfortable with who he is. Are you in favor of pre-natal testing for autism? I worry that all of our autistic children will be aborted because of this type of attitude. There is a fundamental difference in our beliefs of what autism is. I just don't want everyone to think it's a curse or a plague or a burden. My experience is truly wonderful.

[gocatholic]

Speaking as a disabled mother of four (two of whom have a mental illness that makes life rather interesting for us all, at times) I gather from your article that you expect the government to cure your child and you won't be happy until that happens. I'm really disappointed in your angry attitude about disabilities, as if you've been robbed of something and want government to bail you out. I don't appreciate your attitude toward either Nancy Pelosi or Sarah Palin. What do you want them to do? Hide their children/g­randchildr­en? You make a few debatable points but it's kind of difficult to consider them when they're clothed in so much anger.

[Kim Stagliano - Huffpost Blogger]

Hi - sounds like you have a very full plate too. I hope your kids are OK and you're hanging on as best you can. No - I don't expect the gov't to cure my kids. I do expect access to healthcare for my children, and not to have their claims kicked out of the system because 299.0 is a "get out of paying the claim" freebie for insurance companies, as is the case so frequently right now. I do expect to be able to get insurance for my kids - my husband lost his job last Nov, and Cobra was over $1400 a month. We looked for individual insurance and were turned down by 3 companies because of the kids' autism diagnosis. Yes, I am angry about the exclusion. I think speaking for my pre-verbal 8 year old is as important as having sex for an elderly man. Yup. I'd like speech therapy covered.

I write w/ anger/pass­ion/frustr­ation and a need to share what we face with those outside our community. Vanilla verbiage wouldn't get the job done and isn't my style.

Again, I wish the best for your family.

[autismnostrum]

I agree with you that speech therapy should be covered and autism shouldn't be considered a pre-existing condition for finding coverage. I worry that my son will never have insurance aside from what I can get through work, and then what happens if I ever lose my job?

But it's less than helpful to imply that some are more deserving than others when it comes to treating their health issues. Except for Viagra. The whole birth control pills not covered but Viagra is thing gets me every time. And I have had insurance that worked that way.

It's also less than helpful to speculate on causes and cures. Keep with the message - we need insurance. Save the other debates for another time.

[Mindy Poist]

Kim,

Love you and I love the spirit and intent of your latest article. You are so funny and you are my hero in so many ways. However, I don't understand why so many in our community are willing to throw Sara Palin under the bus. This latest snub (of our children's needs) by our political leaders in Congress has nothing to do with her. Palin is one of the few actually doing good things for our kids. Why drag her into this crap--hasn't she had enough? Isn't she (at the end of the day) just like you and me -- a mom of a child (or children) with special needs? Like we need a bunch more $#!+ to deal with at the end of the day. What do you know that I am too slow to realize? I am still trying to understand why so many in our community don't take her at face value, but rather use every opportunity to kick dirt in her face. She could be such a lightening rod for our cause! Please give her a break and find ways to draw her into our camp!

Mindy Poist

[Kim Stagliano - Huffpost Blogger]

Hi, Mindy. And thanks. The press made a big deal out of Sarah Palin bringing her infant son on stage at the Republican convention. Many Democrats berated her for it. Lo and behold, Nancy Pelosi had HER family, including and infant, on stage at her swearing in. So you seen, I wasn't really slamming Palin at all. Just drawing a comparison. And just between us girls? Her name in a headline gets way more attention than "autism" or just plain "healthcare." Shameless, I know.
KIM

[autismnostrum]

She'll never really know what our kids face. She'll likely have fabulous insurance and the best treatments money can buy. She'll never struggle with paying for speech therapy or making the mortgage.

When she stood there on stage and told me that as a mom with a special needs kid, she'd be my "friend in the White House" I yelled at the TV. No she wouldn't have. She was very new to her journey of parenting a child with a disability, and she'd never face the issues we do every day.

Obama, on the other hand, truly knows what it is like to have a mother in her deathbed calling up insurance companies to argue over coverage. While I don't know how he'll handle disability issues, I know he at least understands what we face with insurance.

[bensmyson]

In North Carolina a family is fighting a court battle at a personal cost of over $200,000 against the school board to win a couple of extra hours of help for their 4 year old autistic child. http://educatingowen.wordpress.com They actually won but of course the school and their bottomless pit of taxpayer backing is appealing the decision. Had this been about abortion or the right to say "God bless you" in school, people would be out in the streets with torches. But this is about "autism" a "personality quirk", something kids "outgrow" as a neighbor said recently to my face, a neighbor with her own autistic grandchild.

God help us all if our kids are further ignored. All we are asking is a little respect. It's not like we are asking for the government to spend trillions of dollars in order to pretend to save a mismanaged car company or financial institution(s) or insurance company from bankruptcy. We just want a few hours of speech therapy, ABA, OT and research into causation. We want the right to have our kids insured. Many states allow insurance companies to deny claims of autism related services. We are a nation of individuals, it's about time we were treated individually rather than like a herd of sheep.

Thanks Kim for your work and advocacy but mostly thank you for your dedication to your girls, you are an example for us all.

[Cherie Pearce]

I totally agree! We're in medical debt up to our eyeballs and have been fighting the fight for out son for ten years now. It seems that no matter what parent's of children with ASD's can't get a break. Thanks for speaking out about this, Kim!

Cherie Pearce
Mom of Sean

[Barbara Fischkin - Huffpost Blogger]

Kim

I hope this got our pols off their rears, sandy or otherwise. If anyone can inspire them, you can. You hit all the right notes. We need insurance and better research on autism or we will have a large cadre of sick young adults within years with scant resources. Many many thanks for this, Kim.

[jlu626]

Thanks for saying it Kim...

[wiedb]

Perhaps it's time to bring out some of the old methods we used to get politician's attention. A few years ago, Unlocking Autism lead this fantastic 'protest' against the Whitehouse for going back on promises made during the 04 election. It was unbelievable - and got some national attention. Maybe Pelosi's office should experience just how determined the autism community can be. It was a beautiful thing.

[usna73]

Hi Kim. I've never been misdirected by our so-called "representatives." I began looking for justice on behalf of my brain damaged son by suing,.... early and often.

I think of this the same way I see so many struggles for justice. It took hundreds of years for African-Americans to be give anything that resembles "civil rights." Thousands died. Millions marched.

WW II took 50 million lives to "save the world." A million Vietnamese and 50K plus Americans dead in Southeast Asia in the 1960's and 70's. The extermination of 6 million Jews in Europe.

Power must be met with POWER. We need the leadership to really FIGHT; funding to do this via civil disobedience. I've said from thestart that Autism Speaks is useless as it is now.

Our numbers are too small unless and until we can mobilize, peacefully or not.

[AStouch]

Way to go Kim! Articulate, accurate and funny as always.

When our kids keep getting tossed under the bus by both parties and more children are being effected every day this is a HUGE CLEAR message to us as a community. Do all of you know that WHO has specifically called for "chronically ill" children to be immunized with the bullshit swine flu (toxic soup) vaccine as a first "at risk" group? Then Perpetrator Pelosi excludes ASD's. What does that say about our kids plight on a global front? That tells me we are screwed and now is the time for UNITY and ACTION once and for all. We need to OUST EVERY SINGLE CORRUPT, LYING POLITICIAN that is in the pocket of pHARMa. All of our elected leaders need to remember who they work for and what they are in DC to uphold. THE F'IN CONSTITUTION PEOPLE!! Live, Liberty and the pursuit of Happiness for ALL!! The utter disregard, lack of compassion, corruption, greed and criminal activities going on in our government supposedly for WE THE PEOPLE makes me want to puke. We need to take back America so we can save future families the suffering that we all know and endure courtesy of our government.

[brettsmomsue]

Amen, Kim!
I keep hearing these ads on the radio, about how the federal government will give you $8000 if you're a first time home buyer. Really? The government is OK with spending money (that they don't have) to help someone buy a house. How about an $8000 grant for REAL autism research for every kid who is diagnosed this year?

The whole think makes me ill.
~Brett's mom Sue

[dugmaze]

Good point !!!!

[autmarfcvsmom]

I've spent the better part of the day trying to think of something fabulous to say about your post. You've said it all and said it fabulously (I would have sworn more, but that's just me).
I'm disappointed, and disheartened. I'm thinking about showing up on my congressperson's door stop and begging.
Thanks for speaking up Kim.

[nowGo4ward]

Thank you for putting into words some of what I'm feeling. I've had a very similar wish list for a while now also.

On top of having to try to figure out how to recover my daughter's health

without medical help,

and do this before her accelerating approach into adulthood leaves her with

an uncertain prospect for humane care if we are not able,

it's the waking up every morning with "this is still happening to babies across the world...,"

"this is STILL happening..."