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Posts Tagged ‘Dr. Geri Dawson’

What I Heard

The author of this post is Jess, who can be found at Diary of a MomThere she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
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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.

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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.

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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 atthe 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%.
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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.
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Quicksand And A Rope from Luau’s blog, Run Luau Run 

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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.

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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.

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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.

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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
You can read this full entry on Diary of a Mom, here.

State of Autism Science Webinar and Podcast Series

April 1, 2011 1 comment

The Science Webinar and Podcast Series is a new service from Autism Speaks to help keep our community informed about the latest in autism research. Each month we will feature a leading expert to share with us the exciting progress being made and what it means for individuals and families affected by autism. Our goal is to help our community better understand all the new and exciting science being supported by Autism Speaks and other funders. We plan to be comprehensive in our coverage, including everything from genetics and environmental sciences to medical care and clinical trials. Occasionally, we will also feature special topics, like awareness and family support, that while not part of the Autism Speaks science program, are informed by our research and development efforts.

We are very pleased that our inaugural episode of the Autism Speaks Science Webinar and Podcast Series features Autism Speaks’ Chief Science Officer, Dr. Geri Dawson. Dr. Dawson will share with us two new exciting science initiatives at Autism Speaks aimed to deliver better medical care and develop novel treatments for our community.

Please find the webinar video below this post, or you may access the audio-only podcast here:
http://media.autismspeaks.org/webinars/2011-03-28+13.30+The+State+of+Autism+Science.mp3

5 Days Left Until Light It Up Blue

March 27, 2011 6 comments

The countdown is on to April 1st! World Autism Awareness Month is in reach and we are so excited to Light It Up Blue! Every day, leading up to the big day we’ll post highlights, a special interview and much more!


Who’s Lighting It Up Blue?

More than 500 buildings and communities are lighting it up blue! Christ the Redeemer in Rio de Janeiro, Brazil. Christ the Redeemer is considered the 2nd largest art deco statue and is among the New Seven Wonders of the World.
 

Visit www.lightitupblue.org to get pledge your support and get involved!

 


Community Spotlight 

Today’s virtual interview is with Vicki D. from Nebraska. 

Autism Speaks: What are you Lighting Up Blue?
Vicki D.:
The Nebraska State Capitol Building

AS: Why is this campaign important to you?
VD: My son has autism and I knew when he was diagnosed that I had to be his voice.  I want to help give awareness to the public that people with autism want the same as everyone; to have friends, to be included and have respect.

AS: Getting the State Capitol to light up is a huge accomplishment! How did you do it?
VD: I wrote the Governor of Nebraska and sent information about Light It Up Blue.  I asked him to not only do it for my son but for everyone in Nebraska touched by autism.

AS: What other buildings would you like to see lit up?
VD: The White House.

Are you lighting up blue too? Take this quick and easy survey to tell us how!

 

Dr. Geri Dawson Gives Us an Update!

In this blog post, Dr. Geri Dawson shares how the University of North Carolina will be celebrating World Autism Awareness Day. Several scientists at the University of North Carolina are currently conducting Autism Speaks-funded research on topics ranging from infant screening to animal models to clinical trials that are assessing new behavioral and medical treatments.

UNC to Light It Up Blue

March 25, 2011 1 comment

By Geri Dawson, Ph.D., Chief Science Officer, Autism Speaks, and Research Professor of Psychiatry at UNC Chapel Hill.

 

UNC employees team up in blue for autism awareness: Autism researchers, clinicians, and hospital staff posed to show their support of World Autism Awareness

One out of 110 school-age children in the US is diagnosed with an autism spectrum disorder (ASD).  Given these numbers, it is likely that you know someone who is affected by autism.  Please join me and thousands of others around the world in shining a bright blue light on autism by wearing blue on April 1st and 2nd.  This is one way you can show your support and increase awareness of autism.

People with ASD have difficulties in social interaction and communication and tend to have restricted interests and repetitive behaviors.  Autism is not one condition; rather, it is many conditions with many different causes, which include both genetic and environmental risk factors. When autism is identified at an early age and appropriate early intervention is provided, children with autism can make substantial gains and learn to communicate and interact socially.  With appropriate intervention, many children with autism are able to attend a regular classroom, learn to speak, and develop friendships. ASD affects each person differently.  Some individuals are highly verbal and experience mostly social challenges, while others are nonverbal and unable to live independently. Some people are affected by medical conditions such as seizures or sleep disorders.  Although most people think about autism as a condition affecting children, the challenges are typically life-long.  A half-million adolescents with ASD will be entering adulthood over the next few years.

New research on the biology of autism is pointing toward novel treatments, including medications that could help address the core symptoms of ASD. Each year, Autism Speaks provides $25-30 million in research funding to discover autism’s causes and effective interventions (www.autismspeaks.org).  In fact, several scientists at the University of North Carolina are currently conducting Autism Speaks-funded research on topics ranging from infant screening to animal models to clinical trials that are assessing new behavioral and medical treatments. This research offers hope for the many families struggling with autism in all of its forms.

The diversity of the presentation of ASD is just a part of the awareness we hope to raise this year on World Autism Awareness Day by shining a light on autism.  We want more people to appreciate the lives of those living with autism, both in terms of the daily challenges and the celebrations of special abilities and milestones achieved.

Saturday, April 2nd is World Autism Awareness Day, dedicated in 2007 by the United Nations to raise awareness about autism throughout society and to encourage early diagnosis and early intervention.  On Friday April 1st and Saturday April 2nd, we will light the world up blue to raise awareness and show support. Landmark buildings, hospitals and schools around the world will change their lighting to blue. Please join us at work and at your home by wearing blue, changing your porch light and hanging a sign to show your support. For more information on how you can light it up blue, please go to www.lightitupblue.org.

Tune In – Dr. Geri Dawson on the Radio Show “Radio in Vivo”

July 13, 2010 2 comments

Autism Speaks’ Chief Science Officer, Dr. Geri Dawson, will appear on the radio show “Radio in Vivo” on Wednesday, July 14, 2010 from 11:00 a.m. – 12:00 p.m. EDT/8:00 a.m. – 9:00 p.m. PDT. To listen, go to http://wcomfm.org and click the link to the streaming signal on the home page.

The show will cover a wide range of topics including autism prevalence, genetic and environmental factors, new directions in research and treatment, and Geri’s areas of specific expertise – early detection and early intervention. The purpose of the program is to provide information and education.

We look forward to hearing your thoughts about the program!

UPDATE (7.19.10): The show is now online.  You can access it at http://radioinvivo.net – click on the Schedule/Program Archive link, scroll all the way to the bottom of that page, and you’ll see the link to the podcast, as well as links to Autism Speaks, the AGP, and the PBS webinar.

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Press Update from IMFAR

May 21, 2010 2 comments

Autism Speaks Chief Science Officer Geri Dawson, Ph.D., opened Friday’s IMFAR session as the first speaker of the day. Dr. Dawson spoke about Autism Speaks research portfolio and advances being made.

Over 1700 scientists, clinicians and family members are on site at the 9th Annual International Meeting for Autism Research in Philadelphia. At Wednesday’s press conference, David Mandell, Sc.D., welcomed the media to IMFAR and gave a broad overview of the research that would be presented. He explained how research into causes of autism benefits treatments. The pathways of research are growing stronger – identification of genes allows for the creation of animal models to understand the biological processes. Compounds and treatments can then be developed to correct the processes.

Some of the big stories that the media has picked up on include research by Brian Freedman, Ph.D. and the team at Kennedy Krieger debunking the myth of significantly higher divorce rates among families who have children with autism. His research showed that the percent of children with ASD living in a two-parent biological or adoptive household was close to the percent of children without ASD in such a family structure – 64 percent vs. 65 percent. That percent held even when the researchers took into account other factors that could have affected family structure, such as socioeconomic status or demographics.

Another study garnering at lot of interest was done by Susan Hyman, M.D. at the University of Rochester. Her team’s research showed that removing gluten and dairy from the diet did not improve the condition in the 22 children tested. While many families adhere to the gluten free casein free diet, Dr. Hyman’s team saw not favorable affects on attention, sleep and stool patterns.

The conference continues through Saturday. To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

“Rest assured, you have the attention of the President and the White House”

“Rest assured, you have the attention of the President and the White House”
My first meeting as a public member of the IACC

By Geri Dawson, Chief Science Officer

Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.

The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.”  She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.”  Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.” 

These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.”  He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.”  “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.” 

I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.

It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.

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