Diary goes to the White House. Please click on the links below (in blue) to read the full story.
After each of the breakout reports had been delivered, we heard closing remarks from Seth Harris, Deputy Secretary, US Department of Labor and Tony Miller, Deputy Secretary, US Department of Education.
Following Deputy Secretaries Harris and Miller, Michael Strautmanis took the stage. According to the agenda, Mike is the Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor Valerie Jarrett. For his sake, I really hope there’s a shorter version of that that he can use at cocktail parties. For my sake, I hope it’s OK to call him Mike.
Mike has been with the President since before he was the President. I am told that he was the one to whom (then brand-new) President Obama referred HERE.
I found it impossible not to like Mike. He is one of us. He is the parent of a child with autism. He gets the joke. He also understands why we’re not laughing.
As the last speaker of the day, Mike took the stage to wrap up the day’s events. He spoke first of the administration’s commitment to our community. He described their “intense focus” on making a difference today - each and every day – in the lives of people living with autism. He used words like “the fierce urgency of now” and spoke of the “sense of impatience” that the administration not only understood, but shared.
I desperately wanted to believe him. I was so grateful to be there – for the energy that was being dedicated and for the important work we were doing. But I just couldn’t reconcile “intense focus” with our President rolling Easter eggs on the lawn a hundred yards away and never coming into that room to acknowledge our presence. As parents of autistic children, we spend an awful lot of time with our kids standing behind closed doors, peeking in on a world in which our children can’t participate. Sadly, it seemed that our parallel universe was intact that day.
But Mike had far more to say. After speaking about the administration, he spoke about US. He leaned over the podium. He spoke without notes. He spoke to us as one of us. An in so doing, he reminded us of what seems so painfully obvious and yet somehow manages again and again to fall on deaf ears in our community.
“As a community,” he said, “we cannot stand divided. We cannot fight amongst ourselves. We must come together, we must stick together. We can argue behind closed doors, but when we open those doors we MUST be holding hands. We need to seek partners. We can only do that TOGETHER.”
It was all I could do not to rush the stage and shout hallelujah and amen.
How many times do we need to hear it, friends? How many different ways can it be said before it finally sinks in? We have turned ourselves into a political nightmare. Politicians who would help us – any or all of us – are terrified that if they do, they will bear the wrath of ‘the other half’ of the community.
We shoot ourselves in the foot every time we take aim at one another. We wrap our arguments in the rhetoric of extremism. We create then propagate division. We sneer at those who would seek a different path for their child – or themselves.
We write and speak of each other with careless disregard for one another’s pain – a pain we ALL should understand. We revel in snark and sarcasm, amusing ourselves at the ultimate expense of progress. We tear each other down when so much more could be achieved by holding one another up. We plant our feet firmly at autism’s poles and lose sight of the entire spectrum of humanity in between. (See Part Five – A Spectrum of Words)
And we spend our precious time and energy screaming that research dollars are being squandered because they don’t follow OUR thinking about OUR child.
Let me say this right now, my friends. There is value in ALL research.
Let’s say that you believe that vaccinations have never caused a single case of autism and that the anti-vaccination movement is reckless and endangers public health. (And if you believe the exact opposite, please keep reading.) If that’s what you believe, then I believe you should be the first in line PLEADING for more research into vaccines. Why? Because if you’re right, then you should desperately want the research to prove it seven ways to Sunday so that we can allay the fears of a generation of parents who are opting out of vaccines and leaving all of our children vulnerable to potentially fatal diseases.
If you believe that the anti-vaxers are akin to the birthers, then produce the damn long-form birth certificate and let’s move on. Because they’re not going away. And if I believed that my child were vaccine-injured, I wouldn’t either.
There is value in ALL research. And far more in research that is done cooperatively by scientists who can build on one another’s findings.
If you believe that the causes of autism are purely, 100% environmental, for the life of me I can’t imagine why you wouldn’t still be fighting for genetic research. It can lead us to an understanding of what it is that makes our children vulnerable to the environmental triggers that you believe are to blame. It can lead us to earlier identification of those at risk and help us find novel ways to both build immunity before the onset of the disorder and – most importantly to our kids RIGHT THIS VERY SECOND – mitigate its effects thereafter.
And biomedical research, as far as I’m concerned, is simply undeniably necessary. Too many of our kids suffer with GI issues and dietary sensitivities for anyone to argue against the need to find out why. For the record, my child suffers neither of these, but that fact doesn’t make it any less valid nor necessary. Thousands upon thousands of parents are following completely untested treatment regimes in their desperate search for help for their children. Test the programs. Research their efficacy and, for God’s sake, test their safety.
The system sucks. It does. Period. We can all agree – at least I hope we can all agree – that it’s mired in procedure and bogged down by process and it’s just too damned slow to affect real change in real time.
But we don’t have time to change the system. Our kids need help NOW. So if we are to move forward and get help, we have to find a way to work within it. As Mike says, we need partners. If we continue to scare them off, we’ll have nowhere to turn.
If we stand outside the walls of the legislature and throw stones at the gates, we may get ourselves on the news, but we have accomplished little else. If we make nice and play the game just enough to get ourselves inside we can change laws.
If we scream and shout at the autism organizations that we believe are doing our kids wrong or who we think are recklessly stoking the fires of fear and anger, we may manage to discredit them to the public, but then what about all the GOOD work they do? What happens to that once they’ve all lost credibility? And what about all the good work that they COULD do if we helped guide them toward it?
Autism Speaks just made a massive commitment to a GI study. It was a long time in coming. But it came because stake holders were wiling to stay at the table and TALK about what needed to be done.
Nothing will happen as quickly as we want it to. Ever. But it won’t happen at all if we allow ourselves to remain divided.
Mike’s last words were these.
“Change happens from the bottom up. We can try to execute change from the White House, but you are the ones who are going to make it happen. It is going to happen block by block, school by school, community by community. This is about people. And we’re losing time.”
We’re losing time.
Those words haunt my dreams.
I introduced myself to Mike before I left. I thanked him for his leadership and for all that he has done for our kids. I told him I was a mom. No longer did I say just a mom. I’d long since banished the just. I stood up straight and said simply, “I am a mom.”
He pulled me into a warm, knowing hug.
And somehow, standing in the EEOB, right in front of the very presidential stage, hugging an advisor to the President of the United States seemed like the most natural thing in the world.
We are parents of children with autism. That connection transcended the fact that we’d never met. It transcended the bizarre setting in which we stood.
We are parents of children with autism.
God willing, that will transcend our differences as a community. Because we’ve got work to do.
Ed note: I tried to take notes as Mike spoke, but I had trouble keeping up, so quotes are pieced together from memory. I believe the quotes to be accurate, but if I misquoted or mischaracterized his words in any way, I hope that others who were there will let me know.