Autism Speaks Official Blog

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.

Passing autism insurance reform legislation has been one tough cookie indeed!

In 2007, when Autism Speaks launched the Autism Votes program and Government Relations Department, three states had meaningful insurance coverage for children with autism.  Today, three years later, our community has enacted legislation in 20 more states in an unprecedented wave of reform across the United States. It has been three tough years and we still have a long way to go to achieve reform for meaningful health insurance coverage for every person with autism in our country, but we are well on our way!

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last couple of blogs has focused on each of the ingredients in our recipe – why we need them, what purpose they serve and how they should be blended together.  Flour represents our grassroots effort.  Eggs represent unity and focus of our community.  Butter which represents professional lobbyist assistance. A pinch of salt represents the bill’s legislative champion and sugar represents the policy.  Each state’s “cookie,” their autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but by following the cookie dough recipe we have a tasty treat in the end for people to enjoy.

We made our dough and it is chilling in the refrigerator while we get out the cookie cutters, the rolling pin and the sprinkles to decorate the cookies. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is our aim.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

Cookie dough is just cookie dough until you bake it. Similarly, a bill is just a bill – words on paper that might read well but have no true impact – until it becomes a law and actually affects change.

Before we roll out that dough, we preheat our ovens and begin to make visits in the off season to legislators.  We start a buzz that heats up our issue long before we put the dough in the oven.  We sprinkle out a little more flour on our countertops and start rolling our dough to shape it for each state.  We lay the cut out cookies on the sheet and sprinkle them with the final touches. We always make sure to put on our oven mitts so we don’t burn our hands.

As the cookies begin to bake, they start to smell great.  We can almost taste them.  But we can’t take them out too early or we will just have hot dough!  We can’t leave them in too long or they will burn up, be inedible and we will have to start over.  We have to put them in and check on them throughout the process to make sure we have baked the best cookie that we can bake.

Do you live in a state that doesn’t have “cookies” yet?  Are you drooling to have some?  We could always use more flour!  Get involved.  We make things easy for you to get scooped up at Autism Votes.  We send you easy action alerts to follow so you know just what to do, how to act and when to act.  We even provide scripts to help you make your phone calls and send e-mails.

We need more help at every level so if you have ever had someone say to you, “I wish we could help you and your family!” here is a low-cost, high yield way that they can do just that.  Ask your family members, co-workers, therapists, teachers, neighbors and friends to sign up at www.autismvotes.org this week.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org.

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last two blogs focused on flour, representing our grassroots effort, and eggs, which represent unity and focus.  With our cookie mix fully underway now, we need to add in three new ingredients – butter, which represents professional lobbyist assistance, a pinch of salt, which represents the bill’s legislative champion and sugar, which represents the policy.  Each state’s “cookie,” its autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but when the recipe is followed to a tee we have a tasty treat in the end for people to enjoy.

Most sugar cookie recipes call for both one stick of butter, a pinch of salt and a cup of sugar.  In order to get all the ingredients to mix most effectively, you have to blend all three of these before you mix them in with flour and eggs. Our goal at Autism Speaks is to secure the greatest benefit for as many children for as long as possible.  Depending a state’s existing insurance code and their particular political-economical condition, our model legislation is retrofitted through a development process that requires legislators and the community work together to produce bill language that is most likely to pass.  Although it sounds counterintuitive at first, developing a perfect bill is not necessarily our aim. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is what we are after.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

A bill is just a bill – words on paper that might read well but have no true impact.  A law is what actually affects change.

So we take our sweet piece of policy, the sugar, and often blend that together with butter, our lobbyists or other professional advisors, before we even begin adding the other ingredients to the mix. Once that is all whipped up together we throw in our pinch of salt – which is a champion.  We have had champions in this state-by-state campaign who have been, most definitely, worth their salt. These champions fight like pit bulls in committees and on the legislative floor for your child almost like their own.  To be most effective, these ingredients are mixed in a separate bowl, and then folded in with the flour, our grassroots, and eggs, our unity and focus, to produce the raw cookie dough.

Cookie dough made without sugar is just a biscuit.  Cookie dough made without butter doesn’t have the smooth texture needed to roll it out and shape it properly.  And salt?  It’s just a pinch…but that pinch is important.  Salt is used in baking for its chemical properties.  Salt slows down all the chemical reactions during baking making the dough stronger and tighter. Salt impacts the shelf life of the final product and it potentiates the flavor of all the other ingredients, especially the flour.  It might be the tiniest portion with regard to the scale of other ingredients but incredibly essential.

With all of these ingredients assembled and blended our dough is almost ready. But just like a bill is a bill – NOT a law. Similarly, dough is just dough – NOT a cookie. Next week, we will learn how to roll out that dough, have our cookies take shape and finish our recipe!

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

All of us at Autism Speaks are profoundly saddened at the passing of Rodney Ryan “Rod” Shealy, Sr., brother of Lorri Unumb, Autism Speaks senior policy advisor & counsel. A longtime South Carolina political advisor and businessman, Rod helped Lorri draft and find legislative support for the state’s autism insurance reform law, named “Ryan’s Law” after Lorri’s son with autism. Colleagues and South Carolina State legislators remember Rod as a man passionate about the political process and his role in it, but also as one who never missed out on the fun and games of politics. He pushed those he worked with to always do their best and, no matter how far behind in the polls a client may have been, he never once doubted his ability to win. We extend our deepest sympathies to the Shealy and Unumb families and ask the autism community to join us in mourning the loss of this great political ally. Thank you, Rod, for seeing the potential in your nephew, Ryan, and others like him, and for the critical role you played in starting the autism insurance reform movement that is now helping families across the nation access the insurance coverage they deserve.

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

Autism Speaks’ approach to advocacy in both our Federal and State-based legislative initiatives uses a specific formula – our “cookie recipe.” My last blog focused on flour, representing our grassroots effort, as one of the most fundamental ingredients for any cookie recipe.  While flour creates a foundation for the cookie, other essential ingredients are required to make the final tasty treat.  Each state’s “cookie,” its autism insurance reform initiative, is shaped, flavored and decorated differently but when we follow this tried and true recipe, we celebrate with a big, batch of cookies.

In our recipe, eggs represent the unity and focus in our community.  Just one egg has 13 essential nutrients and while the cost of other foods skyrocket in today’s economy, the simple egg remains one of nature’s best bargains with regard to high-quality protein foods. Eggs consist of two basic parts held together by a fragile shell. Outward appearances indicate that the fragile egg is contained and unified.  Once you crack that shell, you can see those separate distinct parts – each part of the egg serving a different, but important, purpose for the egg as a whole.

When baking, we know that to move forward and make a great cookie, the egg must be whisked to unify its distinct parts so that it can do what it was meant to do for the cookie overall – serve as a bonding ingredient – unifying the flour, sugar, butter and pinch of salt.

The “egg” in our recipe represents the autism community’s unity and focus on the legislative initiatives we work on to improve our children’s lives. Before we take a crack at these initiatives, we are held together with our fragile shell that unifies us – our children who have autism.  As we move through the process of working on these projects, we crack that egg to find different parts inside – parts of our community that all serve essential purposes.  Parts which, when working separately, would not have the same effect as when they are whisked together in unison and focused.

Every time our family bakes anything, Liam and Mairin argue over who gets to crack and whisk the eggs.  To them it is more fun than measuring out the other ingredients.  It is for me, too.  Over the last three years, I have enjoyed nothing more than working with a variety of different people in the autism community who hail from different philosophies on how their children developed autism, how autism should be treated not to mention the different socio-economic statuses, educational levels and backgrounds.  I love working to whisk them all together and make that “cookie’s” ingredients blend successfully.  I have witnessed firsthand what a unified community can accomplish when they refuse to be divided.

Unity for the autism community is a fragile egg indeed.  But it is a low-cost, big -bargain, high-protein source that should fuel us, bond us and make us better, and more incredible, than we would ever be without it.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

When you build anything from skyscrapers to cookies, everyone knows that you have to begin with a solid, strong foundation. Autism Speaks’ approach to advocacy in both our Federal and State-based initiatives use a specific formula, what we call our “cookie recipe” as our foundation for success. We firmly recognize that each state’s “cookie,” its autism insurance reform initiative, will be shaped, flavored and decorated differently. But when the community follows this tried and true recipe, they have a big, batch of cookies at the end for their celebratory party.

One of the most fundamental ingredients in any cookie recipe is flour. Without flour, a sugar cookie recipe is basically just butter, eggs and sugar – it’s the flour that makes it all come together and taste good. All-purpose flour is comprised of both hard and soft wheats to produce a substance with fine texture and high starch. As a result, the baker doesn’t have to stretch it or make it rise much to produce a perfect cookie. Same with our grassroots advocates. They bind all of the efforts of the policy, the lobbyists and the political leaders. They provide the foundation of the movement that affects change in our children’s lives and come from a variety of backgrounds, blended together for one purpose.

Grassroots are a vital ingredient in comparison with all the other ingredients required to make our “cookies.” They are the flour in this recipe. Typically only 10% of the American population participates in any political activism.  That means that 90% of us won’t get involved directly with issues that can impact and change our lives.

The autism community has a long laundry list of issues to work on. Can we afford to keep asking 10% of the community to help make our children’s lives better?

In the 25 states which passed legislation, the grassroots have doubled their efforts. They haunt the halls of their state legislature. They dial the phones until their fingers are worn out and their voices are weary. They invite legislators to their homes for BBQs and dessert parties to meet their children. They search for creative ways to develop and maintain a presence at the Capitol so everyone knows who they are the minute they see them coming.

In the end, they build relationships with those who represent them. In a world of instant communication and online social media, that personal connection with representatives is key to passing effective legislation. Our community needs way more than the national average of 10% for participation to improve our efficacy. We should be aiming for double that, two cups of flour power, 20%.

What a difference that would make in moving all of our issues along more quickly!

Flour doesn’t make a cookie alone just like grassroots blowing in the wind without sound policy, direction and focus won’t affect change.  Every state needs to double its efforts this fall to prepare for our bake off next spring legislative season … because without that flour power … you just have sweet, scrambled eggs.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

This post is by Mark Roithmayr, Autism Speaks’ President.

Earlier this week I had the honor and privilege of traveling to Washington, D.C., for special ceremonies to commemorate the 20th anniversary of the Americans with Disabilities Act (ADA).

The term “landmark legislation” is greatly overused, but like the Civil Rights Act of 1964, this law literally changed life for millions of people. The ADA has helped level the playing field for people with disabilities in this country, providing important civil rights protections and equal opportunities in the workplace and elsewhere.

As I took part in ceremonies at the Capitol Rotunda and, later, the White House, standing among other advocates for various causes, I found myself reflecting on those past two decades.

Twenty years ago, America barely recognized the word autism, nor understood what it meant for individuals to live with autism. Autism was absent from those founding moments two decades ago. Yet during the ceremonies this week, autism was acknowledged over and over again by elected officials, colleagues and advocates alike. From the floor of the House, Representative Patrick Kennedy referenced autism as one of two federal imperatives for increased funding. Later at the White House ceremonies, President Obama’s Domestic Policy Director Melody Barnes cited the autism movement as a being the central part of today’s disability movement. Next, actor Robert David Hall –himself a double amputee following a devastating car accident – took the opportunity to discuss his twin nephews, both on the autism spectrum, while introducing President Obama, poignantly telling the story of how his brother and sister-in-law have to “climb mountains every day.”

Listening to the group of eloquent speakers, all I could think about was how incredibly far the autism advocacy movement has come in just a few short years. Not only was the day remarkable for the recognition of autism and its overwhelming prevalence in our society – our 1 in 110 children – our 1 in 70 boys, but that these numbers have climbed to new heights being diagnosed more often than childhood cancer, juvenile diabetes and pediatric AIDS combined. There is no doubt that autism is now at the fore of the public’s consciousness as a disorder that is recognized as a national health crisis and a top public health priority

But the ADA ceremonies were about something even larger than our autism movement. It was a day to recognize disability rights as a core civil rights issue and a cause not for partisanship, but for uniting humanity at large. The quotes ran from Thomas Jefferson to Martin Luther King. President Obama honored President George H. Bush who passed the original legislation. Representative John Boener (R, OH) applauded James Langevin (D, RI) – the first quadriplegic to serve in the U.S. House of Representatives – who served as Speaker of the House for the day, the first time that Congress was presided over from a wheelchair.

Reflecting, I truly believe the ADA commemoration was about building on our autism victories, small and large, toward our collective future. The abilities of our community, our children, our teens, our young adults and our adults, are extraordinary and we have the collective will and the moral imperative to create an even better future. The path is clear.

• Our autism community has the ability learn – but we need to ensure accessibility to education through the life span.
• Our autism community has the ability to work – but we need to ensure accessibility to jobs.
• Our autism community has the ability to live independently – but we need to ensure accessibility to housing; and not least,
• Our autism community has the ability to be part of the wonderful social fabric of America – but we need to ensure access to community resources.

In the words of Thomas Jefferson, “the pursuit of happiness is an inalienable American right” and the autism community deserves no less.

We also encourage you to read Celebrating the 20th Anniversary of the Americans with Disabilities Act with Substance blog post by Kareem Dale.

This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.

My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine.  My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.

As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.

Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009.  While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.

The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks.  Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.

Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans.  I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.

The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage.  Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

Autism Speaks' staffer, Jennifer Smith, with a puzzle piece cookie

Every Christmas season when I was little, my grandmother would make a huge batch of cookies and mail off a box to each of the grandkids.  We would rip open the containers and look at all the pretty little cookies that were layered through it. She used the same basic dough to make each cookie, but they were all decorated differently and came in a variety of shapes, sizes, flavors and colors.

When I am talking to Autism Speaks volunteers throughout the country who are working tirelessly on autism insurance reform legislation, I often think about my grandmother’s cookies when I refer to our grassroots advocacy approach as our sugar cookie recipe.  This is because, whether we are advocating for autism insurance reform legislation in the Kentucky State Senate, the New York State Assembly, or the United States House of Representatives, the “recipe” to move from an idea, to a bill, to an enacted law remains the same.

Like my grandmother’s cookies, the Autism Speaks Government Relations Team, in partnership with our Chapter Advocacy Chairs (CACs), families, and a network of other “on the ground” individuals and advocacy organizations begins with a basic recipe for success that we then decorate differently and bake into a variety of shapes, sizes, flavors, and colors.  Like the cookies, no two autism insurance reform bills look exactly alike.  The basic recipe is the same, but certain ingredients are tweaked, added, or removed according to the specific circumstances in the state.

Grandma’s Cookie Recipe for Advocacy Success:

Ingredients -

• 2 cups of all-purpose flour – This is our grassroots.  We need twice as many as you would need to give it all of their purpose to make these bills become laws.
• 1 stick of butter – This is our internal direction or lobbyists.  We need the real thing, not an oily substitute, to help us grease the skids.
• 1 cup of sugar – This is our policy.  It sweetens our cookies and keeps us coming back for more as that policy reforms the lives of children with autism across the United States.
• a pinch of salt – This is our champion or the political leadership of a state, those who are worth their salt and have the fortitude to stand up for our children.
• 2 eggs – This is our unity and focus with the autism community.  It is a binding ingredient that pulls all of the other ingredients together into delicious dough.

Directions – Stay tuned!

For nearly three years, Autism Speaks has focused its state legislative agenda on autism insurance reform.  To date twenty-three states have passed legislation that will bring insurance reform to thousands of families coping with the financial struggles of autism.  Over the past few months, we have published several blog posts written by our CACs and chronicling the journey in their state from idea, to bill, to enacted law.  Our CACs, with their strong leadership skills, their ability to build bridges with others in their communities, their political savvy and policy knowhow are a key ingredient in our cookie recipe for success.  They are our flour.  Over the next few weeks, we would like to show you some great examples of the other ingredients in our recipe for advocacy success and directions for how these ingredients combine to successfully enact a state autism insurance reform law.  A grassroots baking lesson of sorts.

At Autism Speaks, our goal is straightforward.  We want to achieve as many benefits for insurance coverage for as many individuals with autism as possible for as long as possible while working within the parameters of existing law and the political environment of each individual state.  There are still 27 states that have yet to enact autism insurance reform legislation.  Additionally, reform is necessary at the federal level to ensure that all individuals with autism across the country, from infant to adult, have appropriate health insurance coverage for medically necessary, evidence-based autism treatments, therapies, and care.  What ingredients are still missing?  How do we add them into the batter so that everyone can eat?

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

This is a guest post by Sharon Rosenbloom. Sharon is a speech and language Pathologist, autism consultant, and author of the award winning book: Souls: Beneath and Beyond Autism. She is the mother of Joey Rosenbloom, a 22 year old with autism. Sharon and Joey, along with their family members Raia and Bob, are passionate advocates for individuals living with autism – especially those with limited access to communication.

On July 15, my son Joey climbed the steps of the Russell Senate Office Building on Capitol Hill, Washington, D.C. Watching him, it struck me that for a person with autism; this was not so much “The Hill” as yet another mountain to be climbed. To the casual observer, those steps looked deceptively easy.  But for Joey, a 22-year-old man with autism, the journey that brought him to Washington, D.C. with the honor of testifying as part of the Advancing Futures for Adults with Autism Congressional Briefing had been a long and arduous one. This was never more evident than as he ascended those steps. Only those of us who live in the world of autism can imagine the amount of effort it took for Joey to simply wear a suit, let alone develop the skills to access a voice, manage crippling anxiety and transcend the abyss from autism to the steps of this historical government building.

As both Joey’s anchor and rudder, I begged my eyes to stay dry and my heart to stop racing, in order to be the calm presence he needed as he viewed this audience of influence seated before him in The Kennedy Caucus Room. On every level of our senses, each of us at that table knew the importance of this unprecedented event: here sat the faces of adults with autism, each one representing a story of relentless effort and unwavering hope. Finally, beyond the statistics and symptoms, those given the label of autism were truly going to speak. I knew all too well that each panelist with autism had spent their entire life being judged for what the textbooks called “idiosyncratic” behaviors. Yet on this day, these remarkable individuals were being given an opportunity to represent the truth about what adults living with autism have the potential to be, and how the ceaseless love and energy poured onto them yielded extraordinary returns on that investment. As Joey fidgeted with the microphone, I was filled with profound respect for him that dropped a blanket of calm over the sharp edges of my apprehension. Overwhelmed by emotion, I took Joey’s hand, and he let me hold it. I found myself replacing that familiar anticipation of stinging public scrutiny with a prayer that those watching might see each panelist with the eyes of their hearts, listen with their minds wide open and ready themselves for paradigms to shift.

As the last thought was shared and the audience rose to their feet, filling the room with applause, I caught a glimpse of something I had never seen: pride, spreading like a smile across my son’s face. It was then I knew I had witnessed a milestone event which had lit a small candle of hope for Joey, and for all those labeled with autism: that by the miracle of human connection they might now be viewed, if for only those brief moments, through a truer lens.

Autism Speaks EVP of Programs and Services Peter Bell, spoke at NY State Sen. Gillibrand’s press conference on Wednesday, July 7, to support NY State insurance legislation. Below is an excerpt from his speech.

When the CDC released the new rates of autism in the U.S. last December, I remember staring at my computer in disbelief for what seemed like an eternity. My “autism life,” which dates back to 1996 when my now 17 year-old son was diagnosed, flashed before my eyes. All I could see were numbers

1990                1 in 2,000
2000                1 in 500
2004                1 in 166
2007                1 in 150
2010                1 in 110

After gathering my composure, I opened a spreadsheet on my computer and did a few more calculations:

• Using the new autism prevalence of 1 in 110 children, I calculated that among the estimated 4 million births in the U.S. each year, approximately 36,500 children will eventually develop an autism spectrum disorder.
• Since there are 525,600 minutes per year (365 x 24 x60), that means that a child is diagnosed less than every 15 minutes (14.45 minutes to be exact).
• Today alone, roughly 110 families will hear the words “your child has autism.” 70 of those children will be boys.

As devastating as this sounds, the news gets even worse. When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is NO LONGER true. Autism IS treatable, especially when diagnosed early.

Another reason why doctors are reticent to suggest or prescribe a treatment regimen for autism is because they know these treatments aren’t always available due to limited access. That’s because historically insurance providers have rarely covered the cost of autism treatment. For years, families have endured marketplace discrimination when it comes to getting the cost of medical treatment for their children’s autism covered even though most of them have health insurance.

This is one of the biggest reasons why autism ends up being such a financial hardship on most families. Families are mortgaging everything including their futures to help their children get better. Autism Speaks recently learned about a family in Florida that is considering giving up custody of their child with autism simply because they can no longer afford to provide the treatment their son with autism needs.

But the tide is changing. Prior to 2007, only Indiana had an autism insurance law that required health plans to provide coverage for evidence-based medically necessary treatments. Since then, 20 more states have enacted laws. New Hampshire and New York are on the verge of joining this elite group of states who have decided to take a stand in support of enhancing the futures of their families living with autism. We urge Governor Paterson to swiftly sign the New York bill so insurance coverage of autism treatments can become a reality for the families of New York and allow the children with autism of this great state to reach their potential.

But states insurance laws are not enough. Many health plans are exempted from state regulations. These self-funded plans, or ERISA policies, are subject to federal laws and thus far we do not have federal health care reform that requires these plans to provide such coverage for autism treatments.

A key provision in the recently enacted “Patient Protection and Affordable Care Act”, or what most of us call health care reform, does require autism behavioral health treatments to be included as an essential health benefit, but this rule applies only to plans offered in the new health insurance exchanges and certain plans offered in the individual and small group markets outside the exchanges. Autism insurance reform is still desperately needed for other plans, including self-funded plans.

On behalf of the million plus families in America who are doing their best to help their children live with autism, we thank you Senator Gillibrand for your strong commitment to bring autism insurance reform to the autism community.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org