Archive for April, 2012


This quote help…

This quote helps me understand my Hayden a little better:

If a man does not keep pace with is companions, perhaps it is because he hears the beat of a different drummer. Let him step to the music that he hears, however measured or far away. – Henry David Thoreau

Oh, if I could only hear that drummer too….Jesus, please let me listen in.

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Today AutismSpeaks is getting people to rally together in Washington DC to get congress to pass this bill- please help:
“Please help me contact our Members of Congress to ask that they support the ABLE Act and vote it out of Congress. This …See More
Today AutismSpeaks is getting people to rally together in Washington DC to get congress to pass this bill- please help:
“Please help me contact our Members of Congress to ask that they support the ABLE Act and vote it out of Congress. This …See More

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The front page of USA today is a big article about autism research. Making progress as research is released during Autism Awareness Month!

The following r…

The following remarks were delivered by Mark Roithmayr, president of Autism Speaks, at the Centers for Disease Control in Atlanta on March 29, 2011. You can follow him on Twitter @markroithmayr.

Merriam-Webster defines the word epidemic as “Excessively prevalent. Affecting a disproportionately large number of individuals within a population, community or region at the same time.” 

 With the new Centers for Disease Control and Prevention numbers now showing that 1 in 88 children in the United States are being diagnosed with autism – nearly a doubling of the prevalence since the CDC began tracking these numbers – autism can now officially be declared an epidemic in the United States.

We are dealing with a national emergency that is in need of a national strategy. At 1 in 88, we now have over 1 million children directly affected by autism. According to a newly released study the annual cost of autism in the United States is a staggering $126 billion annually, more than tripling the cost analysis from six years ago.

Behind all these statistics are real families, real individuals struggling each and every day. Some with autism are struggling to find satisfying jobs where they can productively use their talents and abilities. Others with autism have extremely complicated medical and social challenges. Make no mistake though, wherever one falls on the spectrum, all with autism struggle each and every day. And it is clearly time we, as a caring society, commit to a National Strategy.  A comprehensive National Strategy that substantially increases all efforts to date. A call to action that:

  • Funds more basic science uncovering the genetic underpinnings of autism.
  • Funds more environmental research detecting the causes of autism.
  • Accelerates the funding and development of effective medicines and treatments.
  • Commits to a strategy where all children with autism from every background are diagnosed no later than 18 months of age.
  • Commits to a National Training Corps recruiting more therapists and service providers as well as specially trained teachers and teacher assistants into the field.
  • We also need to address the growing issue of adults with autism specifically around continuing education, employment, housing/residential living and community integration. Here too, we need a focus on a National Training Corps to recruit and train professionals to work with our adults.

As the nation’s leading science and advocacy organization, Autism Speaks today calls on the entire nation to commit to this National Strategy, a true public-private partnership:

  • From President Obama to each of the Republican candidates for President to all Members of Congress.

We desperately need further commitments from….

  • The CDC and Dr. Frieden whose very funding of this prevalence study is in jeopardy of being cut going forward.
  • Secretary Sebelius and the Department of Health and Human Services.
  • Dr. Francis Collins and the National Institutes of Health.

And it is not the federal government alone we call on.  We need the private sector as well as state and local governments to be part of this National Strategy:

  • Right now insurance companies and the majority of self-funded plans under ERISA discriminate against families with autism denying reimbursement for the basic, evidenced based services that can often dramatically improve the quality of life for their children with autism.
  • There are pharmaceutical companies who can speed the process of effective medicines for people living with autism to improve communication, socialization and behavior, the core symptoms of autism.
  • We need companies across all industries to commit to hiring the 74% of adults with autism who believe they have the potential to be employed if just given the opportunity.
  • And we need employers of all parents who have children with autism to become much, more family friendly as way too many mothers of children with autism have had to stop out of their careers to be able to care for their loved ones because their work environments could not find a way to accommodate their schedules.
  • We need local school systems to deliver individualized and quality driven plans to meet autism’s ever growing demand for appropriate special education services.
  • We need faith based and community based organizations who can provide respite services for parents and caregivers as well as recreational and community integration opportunities for people with autism.
  • And the list goes on to include siblings, grandparents, aunts, uncles, friends and neighbors. At 1 in 88, we are now hard pressed as a nation to find anyone who is not touched by autism.

Ultimately the question we need to ask ourselves is why over the last two decades has there been such a tremendous increase in autism?  Dr. Peter Bearman of Columbia University was funded by the NIH to answer this very question. His findings have revealed that the increase in prevalence is only partly explained by a broadening of the diagnosis, improved detection, and more awareness.  A large portion of the increase some 50% remains unexplained.  That is why we must aggressively fund research, including the critical study of potential environmental factors.  We need to find the answers.  

At 1 in 88, let me be clear, the United States is experiencing an autism epidemic.

This is a national emergency. We need a national strategy.

For more on the new autism prevalence numbers released by the CDC, visit our prevalence page.

Sincerely,
Mark Roithmayr
President, Autism Speaks

Autism Speaks contact information:
Email Address: editors@autismspeaks.org

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Obviously this isn’t about to become a fashion blog. We are wearing Blue for the month of April to raise awareness for Autism.

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Happy Opening Day Rangers. Wearing some BLUE Rangers gear for Autism Awareness.

In Jan of 2011 we were working with Texas State Senator Wendy Davis’s office. Her staff asked if she could share our story and family pics with the Texas Senate to help make her case to pass autism legislation. During that time she was contacted by DFW/CBS11 and connected us. Here is a small part of the story that they reported…

Skydive

Skydive

I remember the day I first heard the words “Hayden has Autism”… We were in a small doctors office at Rockford Memorial Hospital. It was the third time we were visiting “Dr Dan”. I wasn’t expecting a diagnosis that day and sure didn’t expect something so devastating. 

AUTISM, a label that I didn’t understand but I’d researched enough to fear. As a parent you never expect that your child will have to deal with illness. As a father I never thought I would drop off and pick up my child from a special education class. 

Ironically that same day I was scheduled to shoot a video of me going skydiving. I didn’t talk much on that 2 hour drive to the airfield. My mind was just swirling with thoughts and emotions, voices from every angle. I was hurt, angry, disappointed, frustrated, stressed, guilty and then felt it all over again. I was so distressed that day, one thought I will never forget is “that if my chute doesn’t open today I would be ok with being gone”.

Dramatic thoughts on a dramatic day. I’m glad my chute opened and as I drove away from that skydiving airfield it was the beginning of a new life. I was CERTAIN that I will be a Dad who loves, protects, cares for, and invests in my boy, my son, no matter what label anyone puts on him. No matter how difficult, no matter how expensive, no matter if we have to move across the county…