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.
Mark F. Blaxill