what i heard



*
Last Thursday evening, I attended a talk at Boston University with Dr. Geri Dawson, Chief Science Officer for Autism Speaks. What follows is the letter that I felt compelled to write to her after hearing her speak. 

Ed note: I have written before about Autism Speaks and why I have stuck with them through some difficult times. If you’re interested, please click –> HERE <– to read a post that I believe pretty well sums up my position. 

Geri,
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It was such a pleasure seeing you last  week . I’ve never been one to attend a science lecture – at least not on purpose. But of course, I do a lot of things these days I never thought I would. (Like saying, “Yes, we met at the White House.“)
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Life has changed.  
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So I actually thought I was looking forward to listening to you speak.
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Lady, I had no idea.
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You proved that night that Autism Speaks is not just speaking, but listening. You made me, as a parent feel like a partner. You made it abundantly clear that you have taken in what you’ve heard from the community and incorporated it into what you say, what you do, how you think, and where you spend your (our) time, energy and money.
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I heard it in the Vision Statement, newly reflective of the diversity of perspectives within our community. In words carefully chosen to recognize and embrace radically different – even opposing – views on cure and acceptance. In a driving theme that seeks to unify, not further divide.
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“A world in which suffering because of autism no longer exists.”
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Amen.
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I heard it as you espoused the values that drive your research. Urgency – above all urgency. “We CAN hurry science,” you said. Scientific Excellence ensured by rigorous standards and consistent and in-depth review. Families as partners. Above all, I heard it when you referred to the individuals affected by autism as True North – always the guide, always the driving force of all that we do. 
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I heard it as you talked about dissemination – the need not just to research, but to execute. To share knowledge, best practices, and to MAKE INNOVATION IMMEDIATELY ACCESSIBLE TO THOSE WHO NEED IT NOW. 
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I heard it as you talked with pride about ‘buying careers’ - when you told us with obvious pride that while 85% of AS funded fellows were brand new to the field of autism research, 95% remained after the fellowship and 100% – every single one - credited the AS fellowship with the decision to devote their careers to autism research. I had to process that for a while. 85%. 
I heard it when you talked about the leverage of funding from grants. When you told us that federal funding, private grants and other sources added ten dollars to each dollar spent by AS on the first 107 grants seen to completion. Ten to one. 
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I heard it when you said the words I use constantly – “There isn’t AN autism. There are autisms.” The place came this close to sounding like a Baptist revival as I nearly shouted “Amen, sister! Preach on!” from the audience.
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I heard it as you connected the dots that so many parents have been connecting without support when you said, “Autism is not just a brain disorder; it is a whole body disorder.” Did you see me nearly trembling in the audience? YES, I thought, YES.
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I heard it when you said, “Behavioral challenges can be due to underlying medical conditions.” I thought I knew how badly we all needed to hear that reflected back to us by those with the power to affect change. I underestimated the emotional impact of hearing it out loud. It turned out to be pretty intense. Validation can be like that I guess.

I heard it as you talked about sleep issues, seizures and epilepsy, GI disturbances, food sensitivities and depression and anxiety. I heard it as you said, “We are working on understanding the obvious connections between the gut and the brain.” and when you talked about the M.I.N.D Institute GI study which you funded recently to the tune of nearly $800,000. 

I heard it when you talked about the need for comprehensive care. When you talked about the Autism Treatment Network’s (ATN) academic center model. I heard it as you talked about these centers of excellence combining specialties in neurology, pediatrics, psychiatry, GI, sleep, genetics, pain and immunology and the need to create so very many more. I heard it as I said under my breath, “Yes.”

I heard it as you talked about the need to investigate nutritional deficiencies, bone density issues, creatine deficiencies, iron deficiencies, oxidative stress, mitochondrial disorders and metabolic issues.

I heard it when you said that you’ve got Dr. Martha Herbert working on establishing working groups to study the biomedical interventions that parents have been begging scientists to research. Thank God.

I heard it when you talked about the high risk natal study following more than 2,000 infant siblings of children with autism, who are at higher genetic risk for developing the disorder. I heard it when you explained that the infants are followed from close to conception through early childhood, with researchers tracking and investigating EVERYTHING in their world, from maternal infections in pregnancy to vaccines to nutrition to environmental toxins. I heard it when you said that they are collecting dust samples from the homes and using new brain imaging technology to monitor development on a level never before possible.
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I heard it when I asked you if you are looking at the effects not just of individual vaccines, but of administering them in combination and you said, “I simply believe in good science. If the science has integrity, I’m open to investigating anything that will help us find answers.”
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I felt it as my breath caught in my throat and my eyes filled with tears when you talked about the mind-blowing progress being made with genetically altered mice and the very real differences being seen in their socialization, vocalization and repetitive behaviors after treatment. I knew it wasn’t just me as my dear friend Rachel broke down next to me.
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I heard it when you talked about innovation. About the potential being shown by early trials of drugs like Memantine and Arbaclofen. I heard it when you talked about the possible, relatively near-term tractability of single-gene and possibly even multiple-gene mutations.
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I heard it in everything you said that night.
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It was the sound of US – of OUR stake in this, OUR community, OUR words, OUR HOPE.
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On Friday morning, my husband, Luau wrote the following on his blog. He typically writes about running, which doesn’t tend to overlap much with autism. But on Friday, because of you, it did.
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I need to share his words with you. I need you to know how much this matters. To our precious children, of course, above all. But also to US – to their mothers and fathers, their siblings, their grandparents, their aunts, their uncles, their cousins, and, if they’re lucky enough to have them, their friends.
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Just like funding, for every one of our children there are ten more whose fate is tied to the first. And a parent whose heart is leveraged to their (and your) progress ten times over. 
.

***
Quicksand And A Rope from Luau’s blog, Run Luau Run 

**
I am running – pounding the treadmill.

My demeanor is calm, almost stoic, but I am sinking.

Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.

I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.

My breathing becomes labored and yet, I am still calm, stone-faced and waiting.

When the endorphins finally kick in, it is almost anti-climactic.

Yes, I feel good.

Yes, there is some release of tension.

But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.

Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.

***

I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.

Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.

That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.

***

But then last night I was thrown a rope.

Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. SGM went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.

That is exactly how I felt.

It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.

Until last night.

What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.

***

And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.

Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.

Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.

Little darling, the smiles returning to the faces 
Little darling, it seems like years since it’s been here 
Here comes the sun, here comes the sun 
and I say it’s all right

-The Beatles
Thank you, Geri. Thank you for hearing us. Thank you for dedicating your formidable intellect and indefatigable spirit to our families. Thank you for pressing on in the face of so many challenges and believing that as overwhelming as this all is, change – real change – is possible. And thank you to all those who support and share the work that you do.
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Because in your work, there is HOPE.
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Sincerely,
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Jess
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24 thoughts on “what i heard

  1. I’m so grateful to you for sharing all of this with us. I wanted to be there, but couldn’t. To hear that hope come through in your words and in Luau’s….it means everything. Especially the “there are autisms.” As parents, we know every one of our kids is different. I’m happy to hear that the research community knows the same thing.

  2. Glad to see that AS is getting it done. It would have been really great if AS Ustreamed that talk so all of us in the autism community could’ve watched, to share in the hope and the possibilites. Alas, we have YOU and I am grateful for your sharing this with us:)

  3. I wholeheartedly agree with Sheila having sat there and heard the words, I ached to share that moment with everyone I know – autism or not.

    Jess, you have done an incredible job here of sharing the experience AND the huge amount of information.

    - AND THE HOPE.

    Thank you so much for all you do.
    xo

  4. Great post, and something I’ve noticed as well (and serendipitously am intending to write about our local AS event last Friday night). :)

  5. So much to cover here. Thank you for taking it all in and translating it so effectively here. Translational blogging .. who knew!?

    Geri’s hope and committment .. YOUR hope and committment.. It’s just so contagious. Thank God people understand and convey the complex issues and are working to find solutions. The suffering is real. The solutions are needed.

    Here’s to hope.

  6. I was so very sad when I was unable to make it to the meeting. Weird weather and unraveled children prevented me. You know how it goes…Well, now after reading your words and having read Luau’s words earlier this week, I am truly, truly, truly saddened that I was unable to partake in such an inspiring event. Believe you me, I could use a dash of that hope, that esperanza. Thank you for sharing a piece of it with us.

  7. Jess, thank you for sharing this. It was so exciting to read just how many different avenues AS is exploring, and phenomenal to hear how open they are to “multiple perspectives”. It feels as if all aspects of the autism community are finally being heard. Amen!

  8. While I rarely read Autism posts–because it becomes so overwhelming–this one I read with gratitude and peace. Thank you.

  9. Thank you so much for writing this piece. I now need to go back on all of the links that you put in the post. I feel that sometimes I have no other words but thank you when I post a comment. Please just know that your spirit and advocacy well they are a ray of light of hope for so many. It was an excellent summary and please know that I am deeply grateful for your sharing it!!!

  10. Thanks for writing up the talk….it sounds like it was very powerful from mutliple angles. As a former scientist involved in early drug discovery and development (and now a SAHM adovacating for my little guy), I especially found the quote “I simply believe in good science. If the science has integrity, I’m open to investigating anything that will help us find answers.” to be a great! YES – The science can be pushed with the right mindset and it takes individuals thinking outside of their “box” and YES listening to the community that the science is serving in order to get it done. Great job to you for helping connect the dots.

  11. When you get excited about something, Jess, we get excited. There is so much I miss. I was wondering about AS and didn’t fund raise as vigorously as last year but now I am encouraged to do more. Hugs all around!

  12. Jess & Luau, As I listened to “Science Friday” on NPR last week, I kept telling my radio, “They aren’t listening to the parents, they aren’t listening.” 3 or 4 Very smart scientists were talking about the research they were doing on Autism. Parents called in to ask questions & seemingly the comments were ignored or pushed aside. The content of Dr. Dawson’s talk lifted me up. MY hope revolves around the fact that I now know someone is watching & putting ALL the pieces together, in this puzzle called Autism. Thank you for sharing.

  13. Pingback: What I Heard « Autism Speaks Official Blog

  14. Wow, Jess and Luau! You two are great writers. I wanted to ask if you listened to the NPR piece on Science Friday last week. Ira Plato did a piece — a very very short piece on autism — and one of the scientists talked about using stem cells to correct specific genetic abnormalities — or something like that. Did Gerri mention anything about genetic research and stem cells?

    Anyway, thanks, as always, Jess, for sharing your family with all of us. Would that I had the poetry in my heart that you do….
    momofzoe.com

  15. Thanks for the great statistics. My family just participated in our third walk for Autism Speaks and I plan to share some of this good news when I send out my “thank you” emails. As I mentioned in the post that you referenced above, we participated in one of the “sibling studies” that Dr. Dawson spoke about, and it was a tremendously rewarding experience.

  16. i’m a little behind on my blog-reading, and i just read this post this morning. i was apprehensive after reading the first paragraph, but felt mostly reassured by the ed. note. although i wish i could have heard dr. dawson speak in person, i am so grateful to have read your account of it.

    this will be my fourth year on the planning committee for our local AS walk, and it has been a rough road. in our first planning year, my best friend and i attended the AS leadership conference and felt invigorated and optimistic launching our community’s first walk. but midway through planning this year’s walk, with 5 children on the spectrum between us (she has 2, i have 3), it has been very difficult to harness the same spirit.

    reading your account of the progress and ongoing research was so encouraging. but more encouraging was hearing how you felt validated and understood. i cried a bit as a read, but really cried in earnest when i got to the end of luau’s blog post… “here comes the sun” was the song picked by my best friend and i for the theme of our first walk. a beautiful little choir sang it specially for us on that very special morning. thank you for reminding me of it. i really needed the reminder.

    best wishes to you, and your sweet family.

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