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When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling.  At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs.  We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation.  But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing.  He became less talkative, developed verbal tics, and made eye contact less often.  He would obsess about movie videos, ceiling fans, and where we placed his food on the plate.  We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children.  He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive.  He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground.  We were always being told that people with Down syndrome were so lovable and good-natured.  Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability.  During one medical visit, we were told “so what if he had autism, what difference would it make?”  One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility.  We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally.  After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best.  The medicines he took and the way his medical providers approached his care significantly changed.  With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges.  In fact, as he has grown older, those challenges have only increased.  But the diagnosis has provided relief to our family because we now understand him better.  We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them.  And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

Autism Speaks Recognizes Pearl Harbor Day and our Military Families

December 7, 2011 4 comments


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!

Here is How YOU Can Help:

1) PLEASE ASK YOUR MEMBER OF CONGRESS TO CO-SPONSOR THE CARING FOR MILITARY KIDS WITH AUTISM ACT BY SENDING THEM AN EMAIL HERE. NOTE: We have it preloaded in the system so if your Member of Congress has already sponsored this legislation they will receive a thank you note; if not, they will receive a request to sign on as a co-sponsor. You can take action here.2) SPREAD THE WORD ON FACEBOOK. Post the following suggested message on your Facebook page:“SUPPORT OUR MILITARY FAMILIES! Email your Member of Congress to ask them to co-sponsor the Caring for Military Kids with Autism Act. Military members now lose their autism insurance benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat. Help end this injustice against those who matter most to our country by taking action with your Member of Congress on the link below. Repost. Then write DONE so I can thank you!”LINK TO: www.autismvotes.org/Military Kids

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!


Collapse of ‘Super Committee’ Could Trigger Major Cuts to Disability, Autism Programs

November 23, 2011 2 comments

The collapse this week of the Congressional “Supercommittee” to come up with a deficit reduction plan could lead to automatic cuts in the federal budget totaling at least $1.2 trillion over 10 years. Unless Congress acts, the cuts will begin to take effect in January 2013.  Medicaid and Social Security will not be cut, but autism activities at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Health Resources and Services Administration could be cut by as much as 9.3 percent.

Autism Speaks is a member of the Consortium for Citizens with Disabilities, which released the following statement on the deadlock of the Super Committee from Donna Meltzer, CCD Board Chair:

The Consortium for Citizens with Disabilities (CCD), a coalition of approximately 100 national disability organizations, shares its disappointment today that the Joint Select Committee on Deficit Reduction has failed to come up with a deficit reduction package that addresses the nation’s debt in a manner that is balanced and fair.  While the CCD is very pleased that members of the Super Committee worked to protect entitlement programs that are critically necessary for people with disabilities such as Medicaid and Social Security, the failure to complete a comprehensive package leaves consortium member organizations very concerned about how sequestration will impact the nation’s 54 million Americans who live with disabilities and their families.

CCD knows that people with disabilities and their families depend on a safety net of programs that include both entitlement and discretionary spending.  Because the Committee was unable to enact a thoughtful, balanced and collaboratively developed deficit reduction package, we now face devastating mandatory cuts to many critical programs serving people with disabilities in sequestration. The nation’s budget cannot be balanced on the backs of those with disabilities and chronic health conditions.

A new report released this month by the Census Bureau shows that 49.1 million Americans are poor.  People with developmental and other disabilities, who continue to face the highest unemployment rates, are overrepresented in that number.   Especially in times of a weak economy and high unemployment rates, programs that support people with disabilities – such as supported employment, family supports, food stamps, Medicaid and other community based supports and services – must continue and be protected from across-the-board budget cuts.

CCD urges the Congress to work in a bipartisan manner to enact balanced reforms while investing in its most valued resource – the American people.

The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.

Tell Congress to Pass the Combating Autism Reauthorization Act

September 21, 2011 4 comments

Ursitti is the director of State Government Affairs at Autism Speaks and is the mother of two children, 8-year-old Jack and 11-year-old Amy. She lives just outside of Boston and has been involved in autism advocacy since Jack’s autism diagnosis 6 years ago. She writes a personal blog called Autismville.

Judith Ursitti and her son, Jack

“I’m not giving up on this kid, and you’re not either.”

Dr. B peered over the medical chart, looking me squarely in the eye. I, of course, was not ready to give up. Couldn’t ever imagine giving up.

But to hear her remind me that she wasn’t either? Well, when you’re the mom of a kid who’s been labeled non-verbal, non-responsive, extremely-challenged, severe—all words that pretty much equate to hopelessness—the commitment of someone, anyone other than you…it resonates.

My son Jack has been seeing Dr. B for four years now. Yes, he is incredibly challenged by autism but first and foremost, he’s a great kid. Dr. B realizes that and has done everything within her power to make sure that he reaches his full potential, that his medical needs are met, and that he feels good, even though it’s hard for him to tell us.

She runs one of the 17 Autism Treatment Network (ATN) sites where people like my Jack, who have been diagnosed with an autism spectrum disorder, go for highly coordinated medical care. It’s worth noting that ATNs are partially funded by the Health Resources and Services Administration (HRSA). Your help is needed in order to ensure that the 17 ATNs dotted across the country have the ability to keep supporting and believing in beautiful people like Jack.

Five years ago, the Combating Autism Act (CAA) was passed by Congress. Millions of dollars were authorized to fund autism research, diagnosis and treatment. The HRSA ATN funding I mentioned earlier is one shining example of how CAA funds have been invested.

Unfortunately, on September 30th, the provisions of the Combating Autism Act will sunset. Because of this, the Combating Autism Reauthorization Act (CARA) was filed earlier this year. CARA simply extends the work of the Combating Autism Act for three more years. As desperately as it is needed, advocates recognize the challenging times the country is facing, and are not asking for additional funding.

The good news is that CARA has bi-partisan support in both the U.S. Senate and House of Representatives. The bad news is that the clock is ticking. The September 30th deadline looms. The Congressional agenda is very full. We literally need an Act of Congress and we need it before the end of this month.

That said, slowly but surely, things are moving. Due in great part to a huge grassroots push last week, House Majority Leader Eric Cantor posted the bill for an expedited vote before the U.S. House of Representatives where it pased yesterday by voice vote.  Things are less certain in the Senate, where the CARA legislation passed unanimously out of the Senate HELP committee in early September, but has yet to be taken up on the floor.

It is not an exaggeration to say that every day until Septermber 30 will be critical. Congress is focused on many consuming issues and it is up to us to make sure that they don’t leave families and providers who walk in the word of autism a step behind.

In the spirit of Dr. B, I’m not giving up. I’m asking that you not give up either.

Join our final push for Combating Autism Reauthorization Act through United States Senate, by clicking here!

Autism Speaks Testifies at Congressional Hearing

June 1, 2011 8 comments

This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks.

When Peter Bell, our EVP of programs and services, first told me about the possibility of testifying at a hearing Congressman Chris Smith (R-NJ) was holding on a global perspective on autism, I did a double take. It was not surprising that Congressman Smith, a long time friend of the community who with Congressman Mike Doyle (D-PA) had just introduced the Combating Autism Reauthorization Act of 2011 in the House last week, is interested in autism. But the fact that he wanted to learn more about the international autism community, especially in Sub-Saharan Africa, had me wondering what could have led the congressman from Brick Township, N.J., to the Townships of South Africa.

It turned out that like many others in our community, Congressman Smith and his colleagues on the House Foreign Committee’s Subcommittee on Africa, Global Health, and Human Rights, understand that autism does not discriminate based on ethnicity or socioeconomic status, and that the only way to speed answers to all individuals and families struggling with this disorder around the world, including those in the U.S., is through international collaboration.

“The benefits of international collaborations and cooperation are multidirectional,” said Congressman Smith in his opening statement at the hearing yesterday afternoon.

In addition to Stuart Spielman and Kevin Roy from our crack government relations team, I was joined at the hearing by Dr. Tom McCool, CEO of Eden Autism Services in New Jersey, Ms. Brigitte Kobenan, founder of Autism Community of Africa, and via teleconference, Ms. Arlene Cassidy, CEO of Autism Northern Ireland. We spent a few hours with members of the subcommittee discussing barriers to progress, such as lack of awareness, capacity and expertise, especially in low and middle income countries.

We also touched on the unique scientific opportunities available and the lessons we can learn from them. For example, we explored the implications of the recently published, surprisingly high prevalence estimate from South Korea; an epidemiology study Autism Speaks funded in a region of South Africa endemic for AIDS to explore the potential risk of a compromised immune system on brain development (link to KZNU study); and the promise of eHealth and distance-learning technologies in the global dissemination of best practices.

Importantly, Congressman Smith credited a trip he took to Lagos, Nigeria, in 2007, where he learned firsthand from parent advocates the enormous daily challenges they face with little or no government support, as the impetus for the Global Autism Assistance Act that he first introduced in 2008 (HR 5446). He is planning to reintroduce the legislation later this week and wants to encourage the “Administrator for the United States Agency for International Development (USAID) to establish and administer a health and education grant program to support activities by nongovernmental organizations and other service providers focused on autism in developing countries…”

“Concerted actions are required to overcome the global challenges to effectively address autism and other developmental disabilities,” Congressman Smith concluded. “We need to continue to help increase awareness of autism at all levels and in all countries, to advocate for the inclusion of developmental disabilities in national and state health policies, to increase the availability of quality services across a continuum of care and across the lifespan, and to continue to support scientific research that will lead to more effective treatments, and one day, to effective strategies for prevention.”

For more information on the Combating Autism Reauthorization Act (CARA) of 2011 please visit Autism Votes.

To view the Congressional Hearing on the C-SPAN Video Library click here.

The Day Joey Testified Before Congress

July 19, 2010 30 comments

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.

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