David Kirby on HuffPo: Autism Speaks, Don't Rule out Vaccines
The Power Plant and the Assassin

President Obama: The First "First Father" of the Autism Generation

Obama_calendarManaging Editor's Note: This is the first in a series of letters to the President.

By Mark Blaxill

Dear Mr. President,

Congratulations on your election. Like so many other Americans, I was inspired when you were elected as the 44th President of the United State of America: inspired that Americans could look beyond race and vote in overwhelming numbers for an African American man; inspired that so many young Americans saw their future reflected in your leadership; and inspired that the world’s faith in the American dream was renewed by our choice. In a more direct way, I guess, I was also relieved that we now have a President who can use the English language with skill and grace (no more “nucular” weapons of mass destruction), formulate a complex argument in real time and communicate it clearly. As a bit of a politics junkie, I stand in awe of how you conducted yourself in the campaign, always disciplined, unfailingly eloquent, never seduced by vanity and consistently focused not on your own ambitions, but rather on the hopes and struggles of ordinary Americans. You ran an extraordinary campaign, and you deserve the opportunity to serve our country as President.

In addition to your constitutional duties, like many in the community of autism parents, I am hoping that we can be inspired by another feature of your life history. As head of the First Family, you also play a leadership role that Presidents often overlook, that of First Father. And like most of us in the autism community, you’re the father of children born after 1990. That places you in the generation of families that have first confronted the horrors of the autism epidemic.

In other words, you’re the first First Father of the Autism Generation.

Like so many other things he didn’t get, George W. Bush didn’t get the autism problem. His twin daughters, Jenna and Barbara, were born in 1981, a few years before the autism rates began their dramatic upward climb starting in the late 1980s. For him, the fear of autism was never more than an abstraction and the rate of autism never more than a remote 1 in 5000 possibility. Bill Clinton wasn’t much better. Chelsea Clinton was born in 1980, and faced essentially the same low odds. Their children’s birth dates placed both the Clinton and Bush presidencies in the baby boom parent generation. And neither distinguished themselves on the autism issue: the Clinton administration failed to raise the alarm as the numbers started to turn up in the mid 1990s; to say the Bush Administration fiddled while Rome burned would be generous in the extreme. What an unmitigated disaster the last eight years have been for autism families.

The sad consequence is that the autism problem has raged for over a decade now and the entire apparatus of the Federal Government has done worse than nothing, it has actively opposed the recognition of the problem and its swift resolution. There is plenty of blame to go around, but the lions’ share of it rests in the Department of Health and Human Services (DHHS) and its troika of agencies that have utterly failed to perform their most basic responsibilities: the FDA, the NIH and, of course, the CDC. It’s long past time to clean house in these agencies, so your choice of Secretary of DHHS holds special importance for all of us in the autism community.

I have high hopes, Mr. President that you will have the insight and wisdom to act differently on autism than your predecessors. Some of that hope is just a personal feeling. We actually have a fair bit in common. Like you, I have two beautiful daughters and an equally beautiful and well-educated wife; I was born at the tail end of the baby boom; I got my graduate degree from Harvard in the 1980s. I was even celebrating my 5th Princeton reunion the same year that Michele got her Princeton diploma. So in our young adult lives we’ve shared many experiences and perspectives. The biggest difference (other than the obvious one, you got elected President!): Malia and Natasha are developing beautifully. My youngest daughter Michaela started out that way, but then she regressed into autism. And that, like so many other autism families, changed our family’s life forever.

But let’s be clear, I’m hopeful not simply because we have some superficial things in common. Most importantly, I’m hopeful that you might actually get it. Your Chicago colleague and legal counsel Michael Strautmanis has a child on the autism spectrum. That puts you one degree of separation away from autism and what it can do to families. Strautmanis has done his best to reach out to the autism community and has certainly got an earful from a large number of parents in return. He has proclaimed publicly that you do get it. Meanwhile, your disabilities team has been active and diligent in spreading the word that families with disabilities should expect more from an Obama administration. I certainly hope they’re right, although as a member of the autism community, I don’t so much identify with the broader agenda of Americans with Disabilities, although I support them, I simply want us to solve the autism problem: to find the cause, to treat my child, and to stop the epidemic so other families won’t have to suffer as we have.

There was a single moment in this campaign that, as an autism father, I remember more than any other and I’m sure I’m not alone. I hope you remember it clearly as well. It was your radio interview with Coy Barefoot, a Charlottesville radio talk show host who also happens to be an autism dad. In his gracious way, Coy put you on the spot with what many of us thought was the best and most consequential question posed to any candidate during the entire campaign. Here’s what Coy said.

“Let me ask one last question. And I ask you this question as a journalist but also as a father to a father. If [dramatic pause]...we had 1 in 150 kids disappearing off of playgrounds and schoolyards and swimming pools in America we would have a national crisis and you as President would be on television every day telling people we are going to find these kids, we are going to put the resources of this government behind a search to help these children and find them. But we do have that going on and it’s called autism and we have 1 in 150 kids disappearing right before our eyes and my six year old boy is one of them. I speak for tens of thousands of families when I say we are desperate for a political leader to stand up and say, ‘We have a national crisis, and we are going to help these children. And we are going to find out what is going on.’ Are you that guy?”

And you said to Coy “I am.” You mentioned Mike Strautmanis and his son and another friend in Chicago with an autistic daughter; you empathized with the hardship that autism families face and, most importantly, you acknowledged that “the rates have grown to epidemic proportions.” More than any other debate line, attack ad or newspaper interview, this campaign promise to Coy Barefoot is the one I remembered. You promised Coy, father to father, that “I am that guy.”

So, Mr. President, in another father to father plea, indeed now to the new First Father, I’d like to repeat Coy’s request. Be that guy. Declare autism a national emergency. Make sure that the first Autism Generation is the last one. Help us beat the rates back down to 1 in 10,000 or lower. And help us redress the damage that has been done to our kids and help them recover their ability to function and live full lives. There are a lot of people out there who say we’re nuts to hold out that hope, that our kids are toast and that we can never hope for anything beyond a bleak future for them. But there are a lot more of us who are saying they’re wrong. We’re saying:

Yes we can.

We can face the tough questions and get past old orthodoxies; we can stop the autism epidemic; and we can help our children recover. We just have to face reality and get to work. Mr. President, please help us put the failures of the Clinton and Bush administrations behind us. Help us help our sons and daughters. Be that guy. We’re all counting on you.

Sincerely,
Mark F. Blaxill
Cambridge MA
Michaela’s dad

Comments

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anonymous

Thanks, Deja Wine, for your eloquent post on this thread (which I would've missed otherwise).

I think the letter should be submitted to publications nationwide (newspapers and magazines) for publication as an Opinion essay.

Here's an outstanding media tool for sending the letter out widely (with permission, of course):

Click here to get in touch with the media now. http://capwiz.com/arab/dbq/media/

deja wine

HI MR. OBAMA I WANT 2 THANK YOU FOR BEING WHO YOU ARE TODAY WELL, I LOVE YOU BEING MY PRESIDENT AND TO TELL YOU MORE AND ME IM IN THE SEVENTH GRADE I GO TO HIGHLAND MIDDLE AND MY NAME IS DEJA WINE SO THANK YOU FOR ALL YOUR SUPPORT FOR HELPING THIS WOPRLD BECAME A WAY BETTER PLACE THANK YOU GOD BLESS AMERICA

PS. I VOTED FOR YOU WELL MY MAMA DID BUT I WOULD HAVE TO BUT IM TO YOUNG

MAC

Mark, "Thank you" for such a great letter to the President. I actually have tears in my eyes...not sure if it’s all the pain we ALL have been through over the years, or the (hope)happiness I believe we shall endeavor in achieving our common goal. You are saying the same thing, I have been feeling during this election and why I voted the way I did. Here is an email I sent out earlier asking Lenny to direct a strong push for our kids.
------------------------------
Hello Lenny - President Elect Obama has a new website that asks for input from the American people. I posted this below on his website; you may want to include it in your Schafer News daily report sent out to all. I would love to see a huge grass roots effort from the autism community in getting his attention for a cure. Nothing less. ============================================
Congratulations President Obama and your entire staff, you have achieved your dream!

Now for the father of a nine year old boy, my dream is very much unsettled. My dream, and for so many other families dream, and my son’s dream (I’m sure if he could communicate properly) would be to find out what is causing autism and then find the appropriate cure. This is possible, much like JFK's putting a “man on the moon.” You have to be our beacon in making things happen, with a very much intended goal.

I ask that you develop a strategy in finding a cure, make it very aggressive because our children’s lives, our country’s future depends on it. A plan that calls for a cure to be established within three to five years, but it will take funding and proper research at unprecedented levels by the federal government.

In all honestly, we families of autistic children do not care much about anything other then finding this long elusive cure. The reason is that we are drained of emotional, financial, social, and personal resources and energies in fighting for our children – the only resource we have had is our Hope. We don’t have much time or energy for anything else.

In noting that, our Hope is in you, so please make a commitment that we will spend and do whatever it takes to cure autism as quickly as possible, because so many children and American families are leaning on that Hope. Our Hope is in you.

Sincerely,
Michael A. Chernoff, for Alexander and So Many Others...

http://change.gov/page/s/yourvision

Jim

Carla, Please be careful with how you paint the picture of us with SKEPTICAL views of the promises of Obama. It is easy to confuse skepticism with cynicism. There IS a difference and cynicism has a much more negative vibe as being pessimistic of "good things". Those of us who are not completely sold on the promises of an eloquent orator are simply giving our opinion too, as you, and it isn't that we said we are CONVINCED we won't see him do anything, we doubt it, but will hope and pray for the very best. I believe ALL our opinions are useful and help to keep the people in charge, (the Father of the Autism Gen.) in check and doing what is right and just for our children and our country.

Carla Jenkins

I understand the cynicism about what Obama will do for kids with autism, but I don't think it's particularly useful. I agree with Mary, an open letter signed by hundreds (or thousands) would be great. Alternately, we could all write our own letters. Thanks, Mark. Great letter.

Vicsmom

I have given my opinion before, supporting and questioning some things posted on AoA. This time I will say, as a bankrupt family struggling along the autism road...IF Obama turns out to be the "absent" Father of the Autism Generation, I hope and pray we see some serious questions and articles directed at him and his staff and family. I pray they will not be soft questions but hard hitting to the point-put him on the spot questions. And, I hope and pray that the glowing admiration expressed in this letter is followed by much honest attention to REAL results. Let's keep a close watch on what is really done for our children.

Kathy Blanco

Mark
Your letter, though well intentioned, is not going to even flitter to Obama's eyes. He has appointed Tom Daschle to be DHHS, who has been tied to pharmaceutical SH#$ heads. So good luck with Obama making a dent in anything. The priorities will be to bail out banks, automakers, FREDDY MAC and whomever got us in this mess. Our kids are just dust in the wind to them. Until, and only until we totally boycott vaccines,boycott having out babies in hospitals (to avoid immediate cord clamping them into autism), nothing will be mentioned in the news about this disaster, until it hits someones pocket books. The pharma people will never suffer, because they create autism, alzheimers, cancers, and the like illnesses, and always have a poison remedy for it, or let's say, coverup bandaid. Now today in the news, people are getting alzheiemrs at forty! So, then again, until we refuse flu vaccines, childhood vaccines, and the like, let it hurt them in the ole pocketbook, then, and only then, will autism get mention in the WH.

As for Obama, I have no hopes he can turn this page, or turn it around. He is not for change, just look at his CLINTON cabinet.

BARBARA

YES WE CAN.

Ben's Dad

Sorry, that should have been Tanner, not Tuner.

Ben's Dad

As Doris Goodwin said on Meet the Press Sunday, “You can’t predict history.”

Obama will have to earn his reputation as a president, just like everyone else, but there is a tremendous amount that can be undone quickly. From a WSJ piece –

“Asked what Barack Obama was elected to do, and what legislation he's likely to find on his Oval Office desk soonest, Mr. Emanuel didn't hesitate. "Bucket one would have children's health care, Schip," he said. "It has bipartisan agreement in the House and Senate. It's something President-elect Obama expects to see. Second would be [ending current restrictions on federally funded] stem-cell research. And third would be an economic recovery package focused on the two principles of job creation and tax relief for middle-class families."

I believe Schip will help provide autism services for struggling families in some states, and the other two items will help families with autism as well.

Kim, Lin, Tuners Dad, and others whose families find themselves looking for answers, care, and financial sanity, you remain in my thoughts and prayers. I see someone started an autism group on linkedin, but I don’t think it has an employment networking mission.


by the way, I remembered this week that Ben used to have just one song he would entertain people with. Something about Bob the builder, can we fix it, Bob the builder, YES WE CAN!

Lin

Kim,

We have dire hardship, too. I've already spoken to a bankruptcy lawyer. Selling our home is not an option where we live. No demand. We both currently work full time. Additional jobs are most likely in store for us. I empathize with your situation but do not believe Obama is the second coming or the cure all. Time will tell how much, if any, he will help our situation. I have very little to no faith he will help our children.

As for Palin, McCain continually spoke up and out about our kids, look where it got him…

Stagmom for PhillyLisa

Thanks so much. I do think the economy might brighten a bit faster under Obama. Faster as in walking to say, Illinois from CT rather than walking all the way to California! :) Palin is on her "victory tour" (as Andrea Mitchell called it this morning.) and it's all about Sarah. After all, love her or not, she is a born politician. McCain DID mention kids with disabilites on one of the late night talk shows, which I thought was great.

I say it again, LET'S TAP INTO MCCAIN'S KNOWLEDGE, EXPERIENCE AND WILLINGNESS TO LISTEN!!!! That's a positive next step we can all agree upon, yes?

Again, PhillyLisa - thanks a million. It's important to have support and encouragement. That's for sure. A cheesesteak would help right about now too! If I hop on the train I can be in Philly by 10am!

PhillyLisa

Kim, I'm so sorry your husband lost his job. I may not think much of Obama, but I do hope he has answers for this economy because so many families are suffering, and we all know it's especially difficlut financially for special needs families. My own family is just one paycheck away from financial disaster.

To be fair to Sarah Palin, is anyone even asking her what she wanted to do for our kids? No, the media is only interested in the political back-biting and squabbles within the McCain campaign. They're asking those kinds of questions, and she's answering them.

I don't think Obama's proposed autism bill is going to give us much more than we have already. There is a lot of work to be done, and at this point it doesn't appear that he wants any input from our community. I'm going to take your advice and keep working on McCain while he's still in the senate.

Willie

Mr Blaxill

That was a sincere and heartfelt letter to Mr. Obama. I hope that he hears you as we all need much more than lip service. My recommendation is that you also pursue changes in the law for those people responsible for these needless vaccines with generous jail time per injured child and fines and further that you and others like you (and myself) seek legal avenues that will change the face of autism into a crime to be punished and not an accident that should be pitied. Only then will we get more than speeches proclaiming "I feel your pain"

Lisa Sigismondi

Thank you so much Mark,
Now any idea on what Strautmanis is doing for his child or any way to get hold of him?

Since we are pretty much viewed as parasites and nut-jobs for our views (on how our kids were injured and in how we try and sometimes succeed to recover them) - who has access to Obama that knows exactly what we go through? Whether our country's 'science' agrees with us or not?

Alison MacNeil

Dear Mark, I am your neighbor and also an Autism parent. I've admired your advocacy work for a long time and just wanted to let you know that. We live in Cambridge and my older daughter goes to Shady Hill. Sarah Lazarus saw my bumper sticker "Hell Hath No Fury Like The Mother of a Vaccine Injured Child" in the school pick up line and suggested I write you. My son Nick has Autism, and I am a Rescue Angel and another parent looking healing for my son and our family and someplace productive to put my rage. If you ever need any activism legwork done locally, ask me I'd love to help out. Oh and those 500 vaccine ingredient business cards that started popping up all over Cambridge (that was me!) Thank you again for your voice for our families.Alison MacNeil

Mesha Watkins

Very Well written and said . I am very impressed that you took the time to research to carefully deliver such a powerful letter to President Elect OBama. As a mother of a terrific recovering child on the spectrum, I find it gratifying to know that our newly elected President will at least commit to listening to our issues.

Thank You so Much .

Gatogorra

Thank you, Mark. I hope President Obama reads this-- I hope the Michelle Obama does as well. My husband and I have hope for real progress for the first time in a long time (and yes, we're also relieved that we're not going to have to hear "nucular" again). I hope we're not all disappointed because there are many children who aren't going to make it otherwise.

Laura Kozlowski

I wish people would stop treating Obama as the second coming. He is just another politician who won an election. Big deal he can read a teleprompter-I never heard much of anything that inspired me. Do not get me wrong I do not like President Bush and what he has done. I have seen no evidence that Obama will do nothing wonderful for this country except block free speech, raise taxes on businesses forcing them to either lay off people or at least not hire more people and start a "citizen police force" (whatever that means)
I hope I am wrong and that he can help my 2 children on the spectrum but am not hopeful.

Stagmom

Well, Lin, my husband lost his job on Monday. So I'm damn glad Obama is in office as I think he will do more, faster for our economy. I'm not much good to my kids if we're living in the YMCA = it's hard to find GFCF food in a soup kitchen too. I'm not kidding.

I implore the folks who are disappointed that their candidate lost to PLEASE stay in touch with Senator McCain and help him to stay at the forefront of the autism debate in DC. He's not dead! He's just not President- Elect. Let's use his knowledge, his concern and tap into it.

By the way, I've been listening to Governor Palin's post mortem for days and not once have I heard her say, "I was so looking forward to helping people with disabilites. My son. My nephew. I had a big plans and I'm sorry I won't be able to help those Americans who voted for me because of my passion for this area." It's all, "Oh those mean people twisted my words."

I hope Senator McCain comes to our aid via his role as a senior Senator. He can do it. Let's encourage him.

Kim

Lin

While I appreciate your efforts, Mr. Blaxil, it is beyond me how so many long serving autism advocates could have voted for Senator Obama. The writing has been on the wall for several months and despite that, we are now supposed to hope to educate the man who ignored and avoided us his entire campaign? As if he isn't aware? As if he hasn't answered us already by his actions and words previously?

Why so many refused to support the man in this race who outwardly supported us, our children and our cause in both word and deed for the entirety of this race is a complete and utter travesty and injustice to the children and their loved ones. And why remains to be seen....because we are supposed to hold onto HOPE????

We were proud to have supported Senator John McCain in our house, because he was sincere in his commitment to us. He was the true beacon of HOPE!


luna

As a grandmother of a four year old Autistic boy I want to thank you for your beautiful and caring words. We (my daughter and I) struggle each and every day as tens of thousands other to care for Joseph and appreciated your letter...
Perhaps a an answered prayer is in the making...

Alex

I can only say...hang on there families. Autism can not only take away your child, but your job, your family, your sanity.
Have faith, have hope. Be tolerant, be patient. Look for the smiles, rejoice with the moments. Learn to be an "out of the box" parent.
It is one the most difficult things to endure, but your child needs to see you SMILE, needs to here you say to him...GOOD JOB, and needs to see mom and dad together...IN LOVE.
HANG ON WE WILL MAKE IT!!!

Claire

Great letter! It would have been a little more effective if you had gotten his children's names correctly. It's Sasha and Malia. Not Natasha. Oops.

Editor's note: Actually, the letter is correct, we checked it. Sasha's full name is Natasha. Here's the Wikipedia entry on Obama's familiy life:
Obama met his wife, Michelle Robinson, in June 1989 when he was employed as a summer associate at the Chicago law firm of Sidley Austin. Assigned for three months as Obama's adviser at the firm, Robinson joined him at group social functions, but declined his initial offers to date. They began dating later that summer, became engaged in 1991, and were married on October 3, 1992.The couple's first daughter, Malia Ann, was born in 1998, followed by a second daughter, Natasha ("Sasha"), in 2001

John Stone

Mark

I do believe that there must be with good government the basis of trust. We have lived with the situation for years of the scientific and political classes lined up against a segment of the community saying in effect "Don't trust them, they are just ordinary people", although as a matter of fact as a group we are not defined by a special lack of intellectual or scientific competence - while those scientists who have disagreed have not been engaged in respectful debate but have had very often to pay with their careers.

I remember some years ago an article in the British Medical Journal (which was followed by a heated on-line debate) in which the author called for greater openness with the public over MMR - but this all too evidently was simply a code for shouting the public down ever more effectively. And this is the great game - just as we have seen Nancy Snyderman recently insist that there is no controversy over vaccines, thus by now dismissing the experiences of hundreds of thousands or millions of people in a single breath. It should be said, apart from anything else, that this is not in medical science a secure basis upon which to proceed.

How many times before have we seen ideology combine with pseudo-scientific rhetoric in order to oppress or eradicate some some sub-group of humanity? I fear that when we see all the focus on genes it may not turn out to be very different this time: only this time the defining criteria might not be race or sexuality, but susceptibility to industrially produced toxins.

I think President Obama needs to understand that the institutions which are presently defining this "scientific truth" may be no more inherently objective than any other political or industrial institutions (for instance, the banking industry?), and just as they suit themselves they also often deceive themselves. Too many children and their families are now paying the price for this vanity.

Regards,

John

DD

Wasn't Obama the guy who said (when asked a vax question), "He wasn't in favor of reduced/delayed vaxes because diseases like polio will return" ????? I have little faith in O because he rec'd the most $$ amt from big pharma. I think we would be fooling outselves to think he won't have to keep those "favors" in mind.
Great letter tho' !!

Elizabeth

I love your letter. As a realist, I have to say...HERE is your audience. Too bad your nice letter is going to be skimmed over and filed by some staff member in a file labeled "Administrative - Health Care Issues - Autism", if I researched I could probably tell you exactly the file it would go in.

I think we need to start sharing our stories with everyone we know/see/have contact with...then, with growing numbers of people seeing the connections between amalgam illness, fibromyalgia, autism, asthma, diabetes, allergies, etc. etc. etc., our message will get out - and people will fight for health.

Tim Kasemodel

Mark,

Briliant letter. After the toughest two months of my life with our son Thomas and his severe gastro issues, I am out of tears - If my eyes were not deserts I would be wiping off the keyboard right now.

Thank you so much for being able to put to words what I have hoped for these past few months.

meg929

Beautiful letter. Well done!

Jan

on behalf of my 23 year old vaccine injured son, THANK YOU for writing this. Although my son will never recover from Autism (he probably would have if the therapies available today were available back in 1988/1989) I am hoping against hope that President Elect Obama will get it and not only help prevent more children from developing Autism BUT will do what is so desperatly needed (provide services) for these beautiful young adults, many who were also vaccine injured.
thanks again for an awesome letter!

Allison

"My son will recover" I chant this to myself everyday when I face another day of challenges with my him. Hope for recovery is strong in my heart no matter what obstacles have been thrown our way. We need a leader who understands the possiblities of recovery, has the guts to go after cause no matter where it leads us and will give us tools to help uncover our children's mysteries.

Thank you Mark, this letter is beautiful and filled with deep emotion. I only hope that somehow he is reading what we are sending.

Karen McDonough

I rarely comment on this blog as I am always quite busy; however, I could not pass up the opportunity to express how impressed I am with this extremely well-written and articulate letter.

I am so glad Mark Blaxill is in our corner.

Ben's Dad

Thank you Mark for writing that excellent letter. It has many points that hit home for me. I think it is refreshing to see a president with young kids move into the white house - a young father like so many of us who is still adjusting to where life has taken him, settling into a new house and trying to make it work for the whole family. For this president, having someone with great needs who looks up to him with great expectations is a literal experience.

For our own part though, I think we can claim the dubious distinction of being the founding fathers and mothers of autism, raising the first generation of children with an impaired manifestation of a trait that necessitated a new diagnosis by shear numbers in the waiting room. Children who in another age, or some future age, may have grown into leaders in their fields. And as if by the voyage of the ghost of Christmas future, we are beginning to see how the problems of our world today suffer the absence of the healing benefit of some important contributors that are for now sidelined.

Perhaps the letter, or the collection of letters amassed in this series, could be sent to our First Father for his acceptance and public reading, signed as a declaration by the founding children, fathers and mothers of autism and our supporters. Remember it was not the King of England who gave recognition to an independent grieving United States of America, but a united people who released themselves by declaring it so.

Kelli Ann Davis

“There is plenty of blame to go around, but the lions’ share of it rests in the Department of Health and Human Services (DHHS) and its troika of agencies that have utterly failed to perform their most basic responsibilities: the FDA, the NIH and, of course, the CDC. It’s long past time to clean house in these agencies…”

I agree Mark. These agencies, especially the CDC need some major overhauling.

Unfortunately, Obama has sponsored a bill which actually directs *the CDC* to do the following:

“Establish” a "National Center” in order to:

(A) Provide training and technical assistance to frontline autism service providers; and;

(B) Enhance autism program evaluation support in order to—

(i) facilitate the rapid dissemination of evidence-based and promising practices

(iii) enhance the utilization of a national data repository to support basic and applied autism research.

As I’ve said before, I don’t see how this *advances* reform within the CDC and in actuality, this bill gives the CDC even *more power* to hinder any real progress towards “righting these wrongs” which you’ve pointed out in your letter.

Bottom Line: Only “time will tell” in regards to what advances Obama makes for our children and our community. In the meantime, I’ll be focusing on trying to modify a bill that in my opinion does NOT bode well for our children in its current form.

Kelli

Anne Dachel

Nov. 10 the Washington Post had the story,

Expecting Longer Lives With Greater Risk, Reward,
Down Syndrome Generation First to Outlive Parents
http://www.washingtonpost.com/wp-dyn/content/article/2008/11/09/AR2008110902189_pf.html

The Post reported, "The life expectancy of people with Down syndrome has increased from about 25 years in 1983 to more than 50, thanks largely to medical advances. Although achieving independence has long been the goal for any person with a disability, increased life expectancy has made the goal more urgent now that the baby boomer generation is graying."

One advocate quoted described the impact of all the upcoming dependent adults as 'a serious crisis brewing.'

The Post story focused on Down Syndrome, but I doubt if many people will be concerned about the impact of these disabled Americans. Down Syndrome is relatively rare, affecting one in 800 to one in 1,000 people.

It's amazing that the Washington Post is worried about how we're going to provide for those with Down Syndrome, and yet is seemingly unaware of what autism is going to do to this country. The autism rate in MN is one in every 81 kids. In NJ, it's one in every 94.

I'm convinced the press has repeated the long time claim of the CDC that all the autism is just the result of "better diagnosing" so many times. they actually believe it! Mark writes, "The sad consequence is that the autism problem has raged for over a decade now and the entire apparatus of the Federal Government has done worse than nothing, it has actively opposed the recognition of the problem and its swift resolution."

I usually say that the only thing that will wake everyone up will be when our kids are lined up at every Social Security office in the country applying for disability. But someone in Obama's camp must have the numbers. Someone must realize that children haven't always been like this. Someone, somewhere in the new administration is going to have to start listening to the parents if for no other reason than because of fear. Fear over what the cost of all these disabled Americans will mean for everyone.

My two favorite points when addressing this issue are 1) the Ganz research and 2) the words of Laura Bono. Michael Ganz at Harvard 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. http://www.hsph.harvard.edu/news/press-releases/2006-releases/press04252006.html

Laura Bono of the National Autism Association has given us 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
Media editor

Nicole

Beautiful letter! Mary Holland, that's an excellent idea.

Mary Holland

Mark,
Excellent letter.
What about an open letter to be published in national newspapers, signed by hundreds of people, challenging the Obama Administration to call autism a national emergency?
Mary Holland

Barbie Hines

THANK YOU...you are welcome to speak on my behalf anytime!

cindy

Autism Speaks keeps saying Obama is going to mandate coverage for kids with autism. SHOW ME THE MONEY. Where does the news or his campaign say this???

jennifer

beautiful, Mark. You reminded me of why I feel so angry-this mass poisoning of children started around when I was having children (I'm 48 now). We can all see the destruction around us. When will someone do the right thing?

Teresa

Mark,

Well, I had to grab some tissues about halfway through because you did such a great job describing the past hopelessness while projecting future hopefulness with President Obama.

It has been a rough road these past eight years and it's hard to imagine that it's a new day. I especially agree with your thoughts here:

"Meanwhile, your disabilities team has been active and diligent in spreading the word that families with disabilities should expect more from an Obama administration. I certainly hope they’re right, although as a member of the autism community, I don’t so much identify with the broader agenda of Americans with Disabilities, although I support them, I simply want us to solve the autism problem: to find the cause, to treat my child, and to stop the epidemic so other families won’t have to suffer as we have."


The crisis of autism, with its staggering and increasing numbers, with its consistent yet baffling array of symptoms, and the familiar family tragedy of a normal child regressing after a vaccine(s) exposure and/or proximity to an environmental toxin/trigger ie. mercury.

I am hopeful too, that our very smart president-elect will accept our invitation to turn autism history around. I believe.

Travis Kennelty - Seeking Hope for Connor

This letter made me teary eyed as well. I'm overwhelmed with the notion that it is even remotely possible for our government to step in and put the wheels of change in motion. Our kids are sick and they need help! Thank you Mark for your hard work and dedication.

Maurine Meleck

Mark, with tears in my eyes I thank you for this incredible letter to the President. It speaks so eloquently that which is in all of our hearts. And there it is again--that hope for a new day that will come with the new administration.
Maurine Meleck
grandmother to Joshua, raising and hoping to recover him

John Stone

Well said, Mark. In Britain we have not a single politician who would be prepared to dip a toe in the water on this: the courage and vision are completely lacking, and we have an affair - the Wakefield affair - which is rank enough to topple a government, but it is I believe United States' affair too. One day - and perhaps sooner rather than later - this is going to come home to roost. I think President-elect Obama needs not to be misled on this.

Andrea

Thank you Mark. Perfectly stated as always.

Kim,

I notice you said this is the first of a series of letters to our new president. Besides publishing them here, who are they being sent to? Are they actually being forwarded to a person in the Obama camp?

Sargent Goodchild

Beautifully written letter. I sincerely hope that we can say Obamanos to the Bush administration, the folks at the CDC and to autism as well.

In health,
Sargent L. Goodchild, Jr.
Exec. Director
Active Healing, Inc.
www.activehealing.org

Michelle

Wow Mark - All I can say is wow!! Very, very, very well said!

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