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In Their Own Words – The Big Dance

October 27, 2011 18 comments
It was a random phone conversation of no significance. She mentioned the big dance at a local boy’s school: the first big dance of the year.

I didn’t know about the dance. I listened to who was going, names of kids I knew and some, some only vaguely. “It’s a pretty big deal, it kicks off the social for the whole school year. You remember how it was about the first dance.”I smile to myself. Yes, I remember.

A couple of names were presented as not going. I suggest they are only freshman. Maybe they are just not emotionally ready. “No,” she responds. “They really should go. They meet other kids. Those social connections are important.”

Though Sam is the same age as most of the kids named, he isn’t going. He has never gone. But I don’t say those words out loud. The obvious reason is that he doesn’t go to the school and boys outside the school are not invited.

But that isn’t the only reason of course. Quite unexpectedly I feel a brief waive of nausea. I want to stop listening but I don’t. I realize I have stopped breathing for a moment.

It’s just a dance, I remind myself. Just a dance with teenage kids.

But neatly tucked away are my youthful memories of The First Dance. All the excitement; the emotional roller coaster ride of adolescence – the delight, the terror, crushes and heartbreak; the tentative steps into a more adult world of emotion. That right of passage that most of us experience.

I want Sam to experience that. But he likely can’t. He likely won’t. Why does this particular milestone catch me by surprise? I don’t want to care. But I do.

I keep the conversation moving and ask a mindless question. This time convincing myself, it’s just a dance. Just a dance.

As I hang up the phone and walk to the kitchen, Sam is playing music. We dance with abandon as we often do. And though it isn’t the same; or even close, I hear his laughter as we twirl. I find myself smiling and realize, it will do.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

2011 Autism Law Summit

October 26, 2011 3 comments

Hope and ideas are two things that always matter.

~ H. Jackson Brown, Jr.

by  Judith Ursitti, Director, State Government Affairs

The 6th Annual Autism Law Summit convened this past weekend at a new location — the University of Utah’s Susan J. Quinney School of Law, but with the same underlying theme — the passage, implementation and enforcement of meaningful autism insurance reform across the nation.  Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.

It’s worth noting that the Summit has evolved from an informal gathering of a handful of advocates passing around a hat to collect pizza money, to a capacity-level event, involving more than 100 registrants from 33 states. And once again, hope and ideas intersected with the blood, sweat and tears of parents, providers, lawyers, legislators and regulators, creating undeniable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.

A highlight of the event was the presentation of the 2011 “Speak Out”  award to Lou Melgarejo for his YouTube video, “Fixing” Autism, which he produced in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies.

Special guests, Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.”  Honored as part of the presentation were the five states that passed legislation since the previous Summit:  Arkansas, Virginia, West Virginia, Rhode Island and California.

Other highlights of the jam-packed agenda included:

·     A “Politics 101” presentation by Missouri State Representative Jason Grill relating lessons learned from his experience in the Missouri legislature gaining passage of autism insurance reform

·     A panel discussion on “Convincing Self-Funded Companies to Add an Autism Benefit.”  The panel consisted of providers Bryan Davey, PhD, BCBA-D and Colleen Allen, PhD, CCC/SLP; employer representatives Doug Green of  DTE Energy and Jeremy Shane of HealthCentral; as well as advocate Karen Fessel, Dr. PH  (You can learn more about convincing your self-insured employer to add an autism benefit here.)

·     An analysis of the provider credentialing issue by panelists Misty Bloom, JD of the Behavior Analyst Certification Board; Andrea Chait, PhD, BCBA-D, NCSP, and Jill McLaury, MS BCBA

·     An update on litigation efforts against insurers provided by attorneys Dan Unumb, Ele Hamburger and Dave Honigman

·     A presentation on implementation issues by panelists Billy Edwards, MS, BCBA, of Texas; Mike Wasmer of Kansas, and Amy Weinstock of Massachusetts sharing their experiences implementing autism insurance laws in their respective states

·     A primer on developing successful grassroots advocacy at the state level to gain autism insurance reform by Shelley Hendrix, Autism Speaks, Director of Grassroots Development

·     A robust discussion of “Enforcement of Coverage” by panelists Adam Cole, JD, General Counsel, California Department of Insurance; Jacqueline Eckert, MedClaims Liaison; Dan Unumb JD; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the Missouri Department of Insurance

·     A mock legislative hearing on autism insurance reform, providing an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates

·     Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement

As attendees dispersed Sunday morning, heading back home to different parts of the country, smiles and hugs of encouragement were shared by colleagues old and new.  Once again, the connection of hope and ideas had been sparked.  Truly, 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, step by step, state by state, plan by plan, family by family.

******

Special thanks to our sponsors:  Utah Autism Coalition, Butterfly Effects, MedClaims Liaison and Autism Services Group.

Autism in the News – 10.26.11

October 26, 2011 2 comments

Autism Linked to Unusual Shapes in Lungs (WebMD)
Children born with a certain shape in their airways — the tubes that take air to the lungs — all have autism or autism spectrum disorder, according to a new study. Read more.

UPDATE: Search for missing autistic boy continues in Hanover (Doswell, Mass.)
The search for a 9-year-old autistic boy missing in Hanover County since Sunday continued into this morning without success. Read more.

Rat Study Ties Antidepressants to Autism-like Brain Abnormalities (Psych Central)
A new study shows that immature rats given a common antidepressant can exhibit brain abnormalities and behaviors characteristic of autism spectrum disorders. Read more.

Sewing bee fashions blankets for autistic children (Battle Creek Inquirer)
A sewing bee may not be what initially comes to mind when considering a source of medical charity, but that’s what was happening Tuesday in a common room at Battle Creek’s Chapel Hill United Methodist Church. Read more.

Annual autism fundraiser celebration will honor three community leaders (Sun Sentinel)
The “Fourth Annual Autumn Moonlight”, hosted by Specialty Automotive Treatments, 700 W. Sunrise Blvd., Fort Lauderdale and benefiting the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD) will take place from 7 to 10 p.m. on Nov.18. “Autumn Moonlight” is an annual festive fundraising celebration designed to raise awareness of autism and support the programs, services and research initiatives of UM-NSU CARD. Read more.

Categories: Autism in the News Tags: ,

Live Webchat on the Genetics of Autism: What It Means for You

October 26, 2011 23 comments
Please join us for our first “Office Hours,” tomorrow, October 27, at 12:30pm EST, with Autism Speaks Chief Science Officer Geri Dawson, PhD, and her guest host: University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcome your questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism. We welcome your advance questions at ScienceChat@autismspeaks.org.

Stephen Scherer, PhD, director of the University of Toronto's McLaughlin Centre for Genomic Medicine

Categories: Science

Autism Speaks welcomes the 2011 Dennis Weatherstone Fellows

October 25, 2011 Leave a comment

On Monday, October 24th, Autism Speaks hosted its Third Annual Dennis Weatherstone Fellowship Luncheon at the Princeton Club of New York.  The 2011 & 2010 Fellows were joined by representatives of the Niarchos Foundation, and Lady Marion Weatherstone who welcomed the incoming class and congratulated their predecessors on their contributions in autism research.

The Dennis Weatherstone Memorial Predoctoral Fellowship Program was established with a generous gift from the Stavros Niarchos Foundation.  The Program seeks to encourage the most promising young talent in science to make autism research their chosen career.  Autism Speaks is pleased to present the third class of Weatherstone Fellows.

Sir Dennis Weatherstone’s distinguished career in the financial industry was highlighted by his service as Chairman of JP Morgan from 1980-90.  He later added the role of Chief Executive Officer, which he held until his retirement in 1994.  Sir Dennis was the first Chairman of the Stavros Niarchos Foundation.  Upon his passing in June 2008 the Foundation established the Weatherstone Predoctoral Fellowship Program at Autism Speaks to honor his commitment to discovering the causes and improve the lives of those affected by autism.

2011 Weatherstone Fellows with Lady Weatherstone

  • Cara Damiano, University of North Carolina, Chapel Hill
  • Jillian Filliter, Dalhousie University
  • Sean Johnston, University of Wisconsin, Madison
  • Rui Luo, University of California, Los Angeles
  • Frances Martinez-Pedraza, University of Massachusetts, Boston
  • Kristopher Nazor, The Scripps Research Institute
  • Nir Oksenberg, University of California, San Francisco
  • Allison Waiter, Michigan State University

Lou Melgarejo 2011 Speak Out Award Recipient

October 25, 2011 5 comments

Autism Speaks hosted its 6th Annual Autism Law Summit on October 20-21 in Salt Lake City, Utah attracting 100 parents, advocates, lawyers, legislators and lobbyists to discuss autism insurance reform through legislation and litigation.  This year’s summit was co-sponsored by the Utah Autism Coalition and the University of Utah S.J. Quinney College of Law.

At this year’s summit, Lou Melgarejo received the “Speak Out” award in recognition of  “Fixing” Autism, a video he produced in honor of his daughter Bianca. The “Speak Out” Award was created to recognized those who go above and beyond in raising awareness of autism to the public through the media.  As part of the award, Autism Speaks Co-founders Suzanne and Bob Wright will make a personal donation of $1000 to the Autism Speaks mission area of the recipient’s choice.  Watch the video and read Lou’s acceptance speech below.

“Fixing” Autism

Lou’s Acceptance Speech

“It is a real honor and a privilege to be here at the Annual Law Summit. Before I get started, I thought I should warn you that Representative Boehner has teased ME for crying too much.

This marks the second time that I have watched my “Fixing” Autism video in its entirety. It’s really tough for me to watch. I have, however, tried to read each and every comment, blog, status update, tweet about my video. The response has been overwhelming. It sounds as though I have shed as many tears reading the comments as my video has elicited from those that watched it.

As of today, “Fixing” Autism has over 93,000 views. As flattering as that is, it also makes me a touch sad. That number needs to be way higher. Those that are aware of the video and its message to end health care discrimination against people with autism spectrum disorder, and the disparity in funding are already converts. I am glad that they could take comfort from the video, but really they are not the ones that need to see my video. It is the kid that bullies a shy and awkward classmate, it’s the cranky old lady that yelled at my wife for having our daughter on a “leash”, it is the person that glares at you with a scowl because you can’t appear to control your kid, it is the family member who, when you tried to confide in them that your child was on the spectrum, they tried to tell you that your child would grow out of it… instead of just saying, “I’m so sorry. How can I help?”

The person I am trying to reach is me. Not the guy that is standing before you, but the guy that I was only 6 years ago. That guy is funny, liberal, sensitive, accepting of people with differences, but so caught up with the day-to-day minutiae of his own life that he can’t be bothered with charity work. “Everybody has a cause about something” I would say. I was so put off by everybody championing whatever disease, condition, country, animal, religion people were trying to raise money for that I started my own grassroots movement on Facebook… “The Cause Against Causes”. My first real advocacy.The goal of my movement was apathy… if you were up to it. What at first I thought was funny and tongue in cheek, now makes me sad and ashamed. I cringe when I look back at where I was.

What a shame that is took my own child becoming diagnosed with ASD for me to be motivated to become an advocate for a cause. But I don’t think that my story is an abnormal one. The vast majority of people championing a cause are doing so because somebody they know has been affected. These causes are personal. They mean something to people. It isn’t just about shaking others down for money.

So how do you get a guy like me to care about a cause if they are not affected? That is the question that runs through my mind pretty close to every waking minute of my day. How can I affect change? How do I make people see the injustice I see?

I know TV, and I know a little bit about story telling. So I have to use what I know. That is how the video came about. I have worked in the television industry for 18 years. But I can honestly tell you that of all the big events I have covered and shows I have directed, there isn’t one thing that I have done that comes  close to the pride I have for my “Fixing” Autism video. The fact that an organization that I believe so strongly in like Autism Speaks helped me to spread the message, and is honoring me today with this award means more to me than I could ever put into words.

Thank you Autism Speaks. Thanks to Marc Sirkin for his amazing support and reaching out to me on Twitter to tell me how much he believed in my message. Thank you to Mike Wasmer for your support and for letting me know that my story is not an uncommon one. It is good to know you are not alone. Thank you to the Wright family. Bob doesn’t know this, but in all my years in TV, the only other recognition I have received was from NBC when he was in charge. Most importantly I want to thank my family: Thanks to my parents for all of their support;to my beautiful wife Elsa for hanging in there on this ride, life can knock you down sometimes, but we have been fighting back and trying to not let it destroy our marriage. Thanks to my kids Sofie and Luis. They are the greatest siblings in the world and they fill my life with laughter every day. And to my beautiful Bianca… she is a priceless gift. In six short years, she has taught me more than my previous 34. I am a better person for her being in my life and I love her without condition.

In closing I just want to let you know that I am aware that I am preaching to the choir here, but the choir has a very important job. It is up to the choir to fill people’s ears up with music and often times to move people to join the congregation. Let’s make certain that when we leave here this weekend that we are making noise, not just to those that are already in our flock, but to the world in the hopes that our numbers will rise. Thank you.”

Autism in the News – 10.25.11

October 25, 2011 1 comment

UPDATE: Estimated 2,000 answer call to help search for missing autistic boy (Richmond Times-Dispatch)
At 10:30 a.m., three school buses filled with volunteers left to conduct a search that would start on Verdon Road. Read more.

Rise of autism puts strain on public school budgets (Australia)
The number of children in NSW public schools with autism is nearly four times higher than it was just eight years ago, placing a significant strain on the Education Department budget. Read more.

Study reveals differences in brains of autistic children (WCNC.com)
Researchers in California are doing work that could offer new insight into autism. Read more.

Families with autistic children face long wait time for state services (Indianapolis, Ind.)
Indiana families of children with autism are facing years-long wait for access to state services, a wide geographic disparity in care, and shrinking resources for those children when they become adults. Read more.

Comedian Jay Leno Helps Accident Victim in Motorcycle Charity Ride (Glendale, Calif.)
Late-night talk show host Jay Leno sure puts the grand in grand marshal. The Tonight Show host, who was grand marshal Sunday of Love Ride, one of Southern California’s biggest motorcycle shows, helped a motorcyclist after he had gotten into an accident during the ride. Read more.

 

Categories: Autism in the News Tags: ,
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