Autism Speaks Official Blog

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

The U.S. Department of Health and Human Services (HHS) recently announced that states could define benefits under the Affordable Care Act (ACA), the federal health care law enacted in 2010, by choosing one of several state and federal health care plans as a reference.  The plan each state chooses could have significant impact on the coverage of autism interventions.

HHS is encouraging public input on its intended approach.  To help the autism community respond, Autism Speaks has analyzed the HHS proposal as it relates to autism coverage. Comments should be directed to HHS by January 31, 2012, to EssentialHealthBenefits@cms.hhs.gov.

Under the HHS proposal, the health care plan a state chooses would serve as its standard for all health care plans, whether they operate inside the health insurance exchange created in the state, or in individual and small group health care plans offered outside the exchange. The benchmark plan would set benefits for all health care services, including autism interventions.

The ACA directs HHS to define essential health benefits (EHB) – a set of core health services.  Certain health plans would then have to cover those benefits beginning in 2014. Those plans include: individual and small group health plans that were not in effect the day the law was signed in 2010; Medicaid benchmark and benchmark-equivalent; and Basic Health Programs (optional state programs for individuals and families with incomes between 133 and 200 percent of the federal poverty limit).

The law provides that the EHB include items and services within the following 10 benefit categories:

1.     Ambulatory patient services

2.     Emergency services

3.     Hospitalization

4.     Maternity and newborn care

5.     Mental health and substance use disorder services, including behavioral health treatment

6.     Prescription drugs

7.     Rehabilitative and habilitative services and devices

8.     Laboratory services

9.     Preventive and wellness services and chronic disease management

10.   Pediatric services, including oral and vision care

States must pay the cost of any benefits required by state law that go beyond the EHB.  In a challenging economy, states may be reluctant to assume the cost of additional services, so what is covered in the EHB really matters.

With the stated aim of balancing “comprehensiveness, affordability, and state flexibility while taking into account public input throughout the process of establishing and implementing EHB,” HHS for 2014 and 2015 gives states a choice of four benchmark plan types:

1.     the largest plan by enrollment in any of the three largest small group insurance products in the state’s small group market

2.     any of the three largest state employee health benefit plans by enrollment

3.     any of the three largest national Federal Employees Health Benefits Program plan options by enrollment

4.     the largest insured commercial non-Medicaid health maintenance organization (HMO) operating in the state

If a state chooses a benchmark subject to state mandates, that benchmark would include those mandates in the state EHB package. HHS intends to assess the benchmark process for 2016 and beyond and may exclude some state benefit mandates from the state EHB package.

HHS will require states to supplement coverage if a benchmark plan is missing one of the 10 categories of benefits. For example, if a state’s benchmark plan does not cover habilitative services, such as speech therapy for a child with autism who is not talking at the expected age, HHS could require the plan to add that care.

HHS is considering two specific options for benchmark plans that do not include coverage for habilitative services:

1.     requiring habilitative services to be offered at parity with rehabilitative services, or

2.     letting plans decide which habilitative services to cover

Under the second option, plans would report their coverage decisions to HHS, which would evaluate them and further define habilitative services in the future.  This option might give plans discretion to refuse coverage for autism.

Another concern is applied behavior analysis (ABA).  All plans must cover mental health and substance use disorder services, including behavioral health treatment, and HHS acknowledges that mental health parity applies in the context of EHB.  Many of the benchmark plans will follow state law that makes ABA a covered benefit.  But what if a benchmark plan does not cover ABA?  HHS has provided no guidance, even though the ACA demands this care. (Reference A, B)

HHS intends to require that a health plan offer benefits that are “substantially equal” to the benefits of the benchmark plan selected by the state and modified as necessary to reflect the 10 coverage categories.  In other words, HHS will allow insurance companies some flexibility to adjust benefits, including the specific services covered.  Allowing substitution within or across coverage categories introduces more uncertainty – it could either enhance or dilute autism services.

To respond to the HHS proposal, send your comments by January 31, 2012, to EssentialHealthBenefits@cms.hhs.gov.

President Franklin D. Roosevelt’s powerful and iconic speech following the Pearl Harbor Attacks.

As we honor our military on this special day in our nation’s history, the Caring for Military Kids with Autism Act (HR.2288) continues to languish in Congress. Did you know that our service members lose all autism benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat?

The Caring for Military Kids with Autism Act would end that injustice against those who do so much for our country. HR.2288 would make clear that all military members, whether on active duty or retired, qualify for autism insurance benefits for their dependents. Take time today to help our military families.

Write your Member of Congress below and ask them to co-sponsor HR.2288! If they have already signed on, send them your thanks!

To learn more about the Caring for Military Kids with Autism Act, please visit our Military Families page.

Please stay alert as we guide the autism community in ways that can help make this a reality for our military families. Let’s serve those who serve us! They have put their lives on the line to preserve our freedom, right to vote and opportunity to approach our political leaders every single day. Their children deserve appropriate coverage.

See how many people YOU can activate to help!

 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

Autism Speaks has applauded Governor Andrew Cuomo for signing one of nation’s strongest autism insurance reform measures into law and defended his action in letters-to-the-editor published in the Wall Street Journal and the New York Post.

We are excited that New York Governor Andrew Cuomo has signed into law one of the most comprehensive autism insurance reform measures in the nation, Assembly Bill 8512. This new law requires insurance companies to provide coverage of critical autism therapies for both children and adults. Autism Speaks Co-founders Suzanne and Bob Wright and representatives from New York’s autism community gathered for the bill signing at the Governor’s Office in Albany. For a fact sheet on the new law, go here.

Sponsored in the New York Assembly by Assemblymember Joseph Morelle (D-Monroe) and in the Senate by Sen. Charles Fuschillo, Jr. (R-Nassau,) the new law will provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA). It will take effect in 12 months – on November 1, 2012 – and allow up to $45,000 a year in ABA treatments with no limits on age or number of visits.

From left, Sarah Milko, UNYFEAT; Susan Hyman, M.D., from U of Rochester (ATN site); Paige Pierce, NYSFT; Jan Campito, ASA Albany; Neil Pollack, Anderson Center; Bob Wright, Co-founder, Autism Speaks; Suzanne Wright, Co-founder, Autism Speaks; Judith Ursitti, Autism Speaks; Assemblyman Joe Morelle, Bill Sponsor; Jim Fahey, Autism Speaks N.Y. Advocacy Chair; Mike Smith, FAIR Autism Media; John Gilmore, Autism Action Network; Peter Bell, Autism Speaks

By Daniela Foley

The inaugural Puzzle Pieces of Our Community event was held to honor those individuals and corporations who have supported the autism community. The main honoree and keynote speaker was Senator Marco Rubio who gave an incredible address about his experience with autism both politically and personally. He spoke about his involvement in the process of passing insurance reform here in Florida. He touched on his personal connection through members of his staff with children on the spectrum. I think the most impactful part of his address was his passion for wanting to take swift and bold action because of the staggering number of people in the United States living with autism in the United States today. He is resolute in his desire to ensure that we take notice as a nation as the disorder will impact us as a nation. (I’m not sure we could have written it better if we did his speech ourselves). He moved everyone in that room.

The other honorees included:

Baptist Health of South Florida for their South Miami Hospital Child Development Center which offers comprehensive diagnostic and early intervention services which is the greatest example of their commitment to helping families living with Autism.

CBS4 for excelling at creating awareness about autism research, disseminating important information to the community about services.

Greenburg Traurig for 10  years of support for the Miami Walk Now for Autism Speaks. Their role is instrumental in providing families with a day of sharing, support and hope.

Univision for being a social worker to the Spanish speaking minority that desperately needs vital information regarding services, resouces and treatments.

The evening was a success on all levels. The Senator confirmed his attendance only 4 weeks prior to the event but we sold enough tickets and tables to fill the room in that short time period. His keynote speech was both informative and inspiring! The silent and live auctions combined a significant portion of the fundraising effort and “Fund the Mission” was particularly successful raising more than $10,000 in a period of about 10 minutes. Most importantly, awareness was raised within the corporate community with individuals giving after the event and asking how to get involved with future events including the Walk. There is no greater reward than seeing how people are touched by the cause.

This event grossed over $100,000 which is a tremendous success for an inaugural event and I think a testament to the incredible efforts of a committee determined to reach our goals. None of which is possible without the fearless leadership of Lula Folgosa. It is her selfless giving of time, energy and love that we were able to have this event and lay such a strong foundation for the future of events like this here in Miami.

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Hope and ideas are two things that always matter.

~ H. Jackson Brown, Jr.

by  Judith Ursitti, Director, State Government Affairs

The 6^th 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 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.”

By Stuart Spielman

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.

The IOM recommends that HHS use the following process to establish the initial essential health benefits package:

1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health

2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford

3. Weigh possible trade-offs through public discussion of benefit costs

4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient

The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.

With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:

• 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
• 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
• 38.6% of families who have a child with autism have financial problems (16.7%)
• 57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.

“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”

Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.

Sometimes words that aren’t actually spoken out loud are the most powerful of all. Lou is the married father of three. His eldest daughter has autism. You can read more at blog, Lou’s Land.

A message from Lou:

Sometimes anger can really inspire you. Sometimes it is the simple ideas that are the most effective. When the two come together, it can lead to something really special. That has been the experience I have had with my “Fixing” Autism video.

I don’t think anybody would ever describe me as a braggart, but this time I am not going to shy away from being proud of something I created. Probably because this time it is personal. Have you ever reached your limit? On August 13^th, I had reached mine.

I had a simple plan. Share my story and back up my frustration with facts. The numbers had been driving me mad for months. While doing some research on autism statistics, I had come across a page on the Autism Speaks website entitled; “Facts about Autism” and the numbers were dizzying. The disparity in funding made me sick to my stomach. Most people of child bearing age know the basic statistic that 1 in 110 children in the US will be diagnosed with Autism Spectrum Disorder, what most people don’t know is the frustration that comes from the parents of autistic kids when they see the complete lack of equal funding for something that appears epidemic in nature, particularly to those involved.

I must have visited that page 10 times. Each time I looked at the numbers my frustration increased. As I stared at my computer screen, I felt like more people needed to understand these statistics. They were absolutely vital to the war that parents dealing with ASD are fighting every day. Those numbers are why these parents have to struggle. But while I found the numbers important and interesting, I really felt like they were dead on the page. Reading statistics is not exactly exciting. It isn’t “sexy” as the Hollywood types say. That is when the light bulb turned on.

I had to give the numbers meaning. I had to personalize them. I had to add a human element to what those statistics meant to the parents of an autistic child. To do that, I knew that I would have to make myself a little vulnerable. I had to tell our story and why I felt those numbers had to be shared. What I realized as I made my notes was that it really wasn’t MY story. It was OUR story. The autism community has a shared experience of embarrassment, shame, anger and helplessness. Often times, all of these chips stacked against us result in us being quiet and shutting down. We become discouraged and for fear of being denied yet another service we view as vital but the insurance companies see as “experimental”… we do nothing, paralyzed by fear.

Powered by a lack of sleep from staying up with Bianca most of the night, I opened up some notes I had emailed to myself and started to transfer those thoughts to index cards. I knew exactly what song I wanted to use because a few months earlier I broke down in the car when it came on the radio. It made me think about my daughter. As a man, I could certainly relate to the idea of desperately wanting to “fix” something. That feeling tends to be instinctual to us men folk when we see that something is wrong. We want to fix it. Sometimes we make it worse, other times we may just confuse the situation, but when we are really fortunate we can set things right.

That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.

So I had a webcam, index cards, an MP3 and most importantly the raw, honest truth. After I edited the piece together I clicked play to review my work. I felt like I was watching it for the first time. As if I wasn’t even the one in the video… and I knew it was right. Sure there are some technical things I would like to change… but the message was dead on.

I debated just putting the video up on my Facebook page, but that was safe. I really wanted this message to be heard. I was proud, and I was still angry. I uploaded it to YouTube, told some friends about it, and shared it on the Autism Speaks Facebook page. The reaction was immediate and incredibly humbling. It gave me the motivation to promote it with a little more gusto. An old co-worker of mine believed in the message so much that she started to promote the video all over the Twitterverse. That gave me even more energy to feed off of, and before you knew it the video was being seen by important people in the autism community. Imagine my surprise when I took Bianca to therapy with the intention of telling the therapists about the video only to have them tell me that they saw and loved it before I could bring it up. I was stunned.

So I encourage my fellow parents out there in Autismland… don’t just talk to others about your experience… SCREAM it. It doesn’t have to be a video. All you need is to own the truth. It is OK. It isn’t whining if there is injustice. When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE… it is OK to be mad. Let’s end the shame and the silence and start holding people accountable.

The Combating Autism Reauthorization Act (CARA) of 2011 would reauthorize the landmark Combating Autism Act of 2006, securing the federal response to the national and public health emergency posed by autism spectrum disorders.

For more information on autism legislation and advocacy, please visit Autism Votes.