This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.
If you were planning to call Governor Brewer again today to ask her to veto SB 1593 – HOLD ON! THINGS ARE DIFFERENT TODAY! WE HAVE A NEW MESSAGE BECAUSE YOU DID IT AUTISM COMMUNITY! SHE GAVE SB 1593 A BIG VETO STAMP!
We are thrilled to report that late yesterday afternoon Governor Jan Brewer of Arizona officially vetoed SB 1593, a bill which if enacted would have effectively reversed the accomplishments achieved under Steven’s Law – Arizona’s autism insurance reform. The autism community in Arizona, and all across the country, laser focused their efforts contacting Governor Brewer – speaking with ONE loud united voice.
You can read a copy of her veto message here:
“My mother always taught me that when someone does something nice for you, you thank them. For something as important to our community as this, I hope that each and every one who participated in this campaign – whether you made a call or sent an email or whatever — will take the time now to thank her profusely. Thank her profusely and publicly – through your favorite social media outlet – and get your friends and family to thank her, too!
So, speaking of social media outlets, we are collecting messages for her on this blog below and on our Facebook pages for Autism Votes, Autism Speaks-Arizona and Autism Speaks-National. We want her to see, in public, how grateful we are that she listened to all of you. Please thank her by leaving a message for her below, then write a quick thank you note on one of our Facebook pages. If you would like to send her a more personal email thanking her and telling her how much this means to you and your family, you can visit our Arizona page on the Autism Votes website and take action there.
Her veto also sends a strong message to our community. For one thing, look what we can do when we focus our efforts. We are not weak and helpless. We can move mountains. We can change things. But we have to be diligent and persevere.
Winston Churchill once said, “Sure I am this day we are masters of our fate, that the task which has been set before us is not above our strength; that its pangs and toils are not beyond our endurance. As long as we have faith in our own cause and an unconquerable will to win, victory will not be denied us.”
What a smart man.
Sometimes in our community with all the battles we have to fight on a daily basis we just feel so incredibly helpless but no truer words were ever spoken. We are, in fact, masters of our own fate. The important word to me in this statement is “we,” not “I,” “we.”
WE are a team. WE are all in this community together. WE cannot sit here wringing our hands and whining. WE have to ACT! And when WE do, things change.
Look what changed as a result of your action everyone! Governor Brewer heard you loud and clear over the noise of our opposition. And believe me, they were giving it everything they had to get her to sign it.
The defeat of SB 1593 in Arizona is no small thing. So thank Governor Brewer, then pat yourselves on the back for a job well done.
Neil Calore’s ‘Voyage For Autism‘ is a brave and ambitious trek from Washington, D.C. to New York City to raise awareness for children and families affected by autism spectrum disorders. With an overall distance of more than 425 miles, Neil’s goal was to average 30 miles per 10 hour day. He set sail on April 16, with a wonderful sendoff from friends, family, and the autism community. In this video, Philadelphia’s Mayor Michael Nutter sends his well-wishes.
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Neil chose to fundraise and raise awareness for autism because of his friends who are affected. “I had built this boat, and was out on the water one day just realizing how good I have it,” Calore said. “I need to do something with this. My friends are an inspiration to me and I wanted to give back.”
This voyage will also support the Regional Autism Fire Safety Campaign in Philadelphia. The Fireman’s Hall Museum describes the program stating, “Fires and Medical Emergencies are chaotic. For many affected by autism, those arriving to help can be perceived as a threat, adding to the chaos and causing a panic situation. The Campaign will addresss issues concerning Autism and how families affected can effectively prepare Fire Escape Plans, and prepare for the arrival of First Responders in emergency situations.” Fore more information visit their page, here.
You can track the ‘Voyage For Autism’ live by visiting here.
Here are some photos of the Baltimore Fire Department and Autism Speaks volunteers supporting Neil!
Captain Calore will be arrived in New York City on the morning of May 2 at The Village Community Boathouse.
Donate to Neil’s ‘Voyage For Autism’ here!
Hey Fans! Have you been following your favorite NHL players and teams in the 2011 playoffs? If you missed out here are the recaps! Be sure to stay tuned and show your support, by purchasing pieces of your favorite players’ puzzles using Face-off Against Autism!
Face-off Against Autism highlights key NHL players from each of the 16 playoff teams, transforming his photo into a digital puzzle. Fans can purchase individual pieces for $10. Every fan who visits http://www.autismspeaks.org/nhl and buys at least one puzzle piece will receive a 20% discount off their next purchase at the NHL Store powered by Reebok and be automatically entered for a chance to win one of four jerseys autographed by NHL stars Alex Ovechkin, Martin Brodeur, Sidney Crosby or Henrik Lundqvist. Winners will be randomly selected at the end of the campaign.
For more information about Face-off Against Autism, visit here.
Canucks Win Series Against Blackhawks 4 -3
The Blackhawks fought back from a 3-0 series deficit to force a seventh game against Vancouver. Despite the rally, Chicago fell in overtime in Game 7 with the Canucks coming out on top 2-1. Defenseman Brian Campbell of the Blackhawks had a goal and two assists. Roberto Luongo of the Canucks bounced back with a strong Game 7 performance.
Sharks Defeat the Kings in 6
A series full of excitement had the San Jose Sharks beat out the Los Angeles Kings in six games, three of which went to overtime! Dustin Brown, a right wing for the Kings, had both a goal and an assist. Joe Thornton led the Sharks with five points, two goals and the series-clinching goal.
Red Wings Sweep the Coyotes
The Detroit Red Wings hammered the Phoenix Coyotes in a spectacular 4 game run, giving them only sweep in the NHL Conference Quarterfinals! Red Wings Captain Nicklas Lindstrom led the defense and has been nominated to win the Norris Trophy for the 11th time in 13 seasons! Shane Doan of the Coyotes, finished the series with three goals and two assists.
Ducks Fall to the Predators in 6
The Anaheim Ducks came up short against the Nashville Predators, losing in six games. Nashville finished strong after the teams split the first four games. Ryan Getzalf, the center for Anaheim, had six points – two goals and four assists. Due to an injury, JP Dumont only played in 2 games. He had a key assist giving Nashville a 2-1 lead in the Game 6.
Capitals Defeat the Rangers 4-1
In a series that was much closer than the 4-1 defeat reflects, the Capitals came out on top of the Rangers. Washington one Game 1 in overtime and Game 4 in double overtime! Alex Ovechkin was the points leader with 6 – 3 goals and 3 assists. Henrik Lundqvist was tough in the goal for the Rangers with a .917 save percentage.
Flyers Outlast the Sabres in 7
Playing out all seven games of the series, the Buffalo Sabres fell to the Philadelphia Flyers. Danny Briere, a right wing for the Flyers, was the scoring leader with 6 goals and an assist. Sabres goalie Ryan Miller finished up with a .917 save percentage.
Lightning Comeback to Beat the Penguins
With a nail-biting 1-0 game, the Tampa Bay Lightning overcame a 3-1 series deficit to defeat the Pittsburgh Penguins! Lightning Captain Vincent LeCavalier finished with 6 points, 2 goals and 4 assists, while Marc-Andre Fleury of the Penguins finished with a .899 save percentage.
Bruins Survive Against the Canadiens
The Boston Bruins were able to come out on top against the Montreal Canadiens. In what was the closest series of the opening round of the Playoffs, the Bruins triumphed in a 4-3 overtime victory. Scott Gomez was a vital part of the Canadiens offense with 4 assists. Patrice Bergeron of the Bruins finished with 7 points – 2 goals and 5 assists.
5-Minute Screen for Signs of Autism Works in 1-Year-Olds (WebMD)
A simple checklist completed by parents can help doctors screen for signs of autism as early as the child’s first birthday, according to new research. Read more.
Hickory Creek Student Uses Her Experiences to Spread Awareness About Autism (Hickory Creek, Ill.)
An average of 1 in 110 children live with Autism Spectrum Disorders (ASD), which is a group of developmental disabilities that impact social and communication skills, as well as behavior, according to the Centers for Disease Control and Prevention. Read more.
Speakers urge R.I. to pass bills requiring coverage for autism treatment (Providence, R.I.)
Nineteen-year-old Eric Duquette, salutatorian at Smithfield High School in 2010 and a freshman at Rhode Island College, personifies the possibilities of early, intensive behavioral treatment for children with autism. Read more.
Swimming a Marathon To Remember Late Resident (Basking Ridge Patch)
The “Three Y’s Guys” from the Somerset Hills YMCA became the “Two Y’s Guys and the Two Fast Y’s Guys” this year, but their goal remained the same. Two swimmers from Basking Ridge and two others, from Far Hills and Morristown, completed a 24-mile marathon relay swim in the waters off Tampa Bay, Fla. in order to raise awareness about bipolar disorder. Read more.
New Video Game Helps Children with Autism Learn Skills for Independence (Toy Dispatch)
April is Autism Awareness month, and two studies, one published in the journal Intellectual and Developmental Disabilities and one published in the journal Education and Training in Developmental Disabilities , show a new video game helps children with autism andintellectual disabilities learn skills for independence. Read more.
In 2007, the American Academy of Pediatrics published guidelines recommending that all children be screened for autism at their 18 and 24 month well baby checkups. While these recommendations have not been universally implemented in clinical practice, these guidelines are a positive step forward. New research from the Baby Siblings Research Consortium suggests that signs of autism can be detected as early as 6-12 months. Early detection and subsequent early intervention provide hope of changing the developmental trajectories of children with ASD to improve their outcome.
A recent study published in the Journal of Pediatrics, and supported by Autism Speaks, aims to address each of these challenges by utilizing a checklist called the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist. Lead author Karen Pierce, Ph.D. of UCSD asked pediatricians to use this instrument as part of a well-baby checkup. This checklist was developed by Amy Wetherby, Ph.D., who was instrumental in creating the Autism Video Glossary. The instrument is also available online at www.firstsigns.org.
The researchers took a multi-phase approach. They first provided training to pediatricians on the signs and symptoms of autism. Such an approach has been used successfully before by a group at Vanderbilt University. However, this study screened infants as early as 12 months of age and conducted the 1 year screening in pediatricians’ offices, which had not been done before. Next, parents were asked to fill out the questionnaire in the waiting room, and the questionnaire was scored by the time the parent met with the physician. The checklist responses from parents then were reviewed by participating pediatricians, and children who were flagged by the questionnaire were referred to a UCSD clinic for further evaluation. About 12% of children who were screened were referred to the clinic for an evaluation. Of those, about half were followed to 3 years of age and 17% were later diagnosed with an ASD. Other diagnoses included learning disabilities and developmental disabilities.
This study is important for several obvious and some not so obvious reasons. First, and perhaps most importantly, this study shows that it is feasible for pediatricians to become actively engaged in an easy-to-implement early screening program for ASD for children as young as 12 months of age. Also important, all families who were interested were able to obtain the services of a clinician very early in their child’s development. For those that were later diagnosed with an ASD, 100% received treatment by 17 months.
Second, a training program that increased awareness about ASD in the medical community among pediatricians produced a long-term impact on their practice. Only 22% of pediatricians involved were screening for autism at 1 year before the program; now all of them report they are maintaining the use of the toddler checklist.
However, this method is not without its limitations. The effectiveness of this program depends on the ability of pediatricians to have access to and a relationship with a clinic they can refer to, which is not the case in every area of the country or the world. Also, not all infants who were referred went on to receive an evaluation, for reasons that are unclear. The results suggest that early screening may enhance, not replace, evaluation at 18 and 24 months to ensure that cases that may not be detected as early as 12 months are not missed.
We applaud the work of Pierce and her colleagues for their efforts to identify autism as early as possible and bring primary medical care staff into that process. Studies such as this highlight the many very important steps, undertaken by the Baby Siblings Research Consortium, the Autism Treatment Network and the Toddler Treatment Network, to ensure that children are screened as early as possible, seen by a clinician as part of a full evaluation, and then treated by trained personnel for medical and behavioral interventions. Additional efforts should be made to ensure that parents have access to a knowledgeable pediatrician and are provided with the resources to follow up on the recommendations.
Karen Pierce, PhD, Cindy Carter, PhD, Melanie Weinfeld, PhD, Jamie Desmond, MPH, Roxana Hazin, BS, Robert Bjork, MD, and Nicole Gallagher, BA. Detecting, Studying, and Treating Autism Early: The One-Year Well-Baby Check-Up Approach, J. Pediatrics, 2011 (published online April 28, 2011).
Standing before the audience at the New York State Autism Consortium Meeting for Proposed Tissue Collaboration in March, Judith Omidvaran relayed the events that changed her life nearly four years ago. Judith and her husband were the parents of Sina, a 29 year old young man with high functioning autism and epilepsy. Sina had endured previous seizures, but this one took him from his loving parents forever. Reflecting back on that day, now seared into her memory, Judith recalled making a very important and lasting choice. Sina was gone from their everyday lives but she and her husband could donate his brain tissue. In that moment the grieving parents chose to make a lasting contribution to autism research and provide hope for a greater understanding of the lives and all too often untimely deaths of individuals with ASD.
Sudden, unexplained death related to epilepsy (SUDEP) is a most uncomfortable topic, but also a very important one. A new study led by members of Autism Speaks’ staff and published in the Journal of Child Neurology revealed that individuals with ASD who also have a seizure disorder have a risk of death that is eight times greater those with ASD and no seizure disorder. Seizures are not always evident at the time of diagnosis of ASD, and often begin to manifest in adolescence. The difficulties of living with a chronic developmental disorder would seem to be enough, without the weight of worry that these statistics convey. However, one cannot be forearmed if not forewarned.
The release of these data may have been disturbing to some members of the autism community.
Roger Dunlap III was diagnosed with autism at three, and his parents went through the all preparations of caring for the lifelong needs of a child with special needs. Young Roger’s parents, Roger and Heather, began an organization to support the long term care of Roger and others who shared his challenges when these children would need support after their parents had passed. In a twist of cruel irony, young Roger died unexpectedly in his sleep at 9 years old. He was never diagnosed with epilepsy and the exact cause of death remains unknown. The Dunlaps also made an important choice at a difficult time. Their involvement in the autism community connected them with the Autism Tissue Program and they got a call about donation soon after young Roger’s passing. They have continued their remarkable support for the autism community both through their own organization and Autism Speaks.
At this point, however, our understanding of sudden death in autism and epilepsy is poor. An analysis of data on deaths from the California Department of Developmental Services reveal that the cause of death is unknown in 40% of cases. This particular area is one that the Autism Tissue Program is working to improve through detailed analyses of all donated tissue and also though a survey of ASD families who experienced a sudden death of their loved one with ASD .
Autism Speaks, in partnership with the International League Against Epilepsy (ILAE) and Citizens United for Research in Epilepsy (CURE), hosted a meeting in December 2010. The meeting brought together experts in epilepsy research and autism to discuss areas of greatest need and priority in research. The seven key points they developed include:
1) Identifying infants with seizures at risk for autism and those with autism at risk for epilepsy.
2) Identifying risk factors common to autism and epilepsy.
3) Developing new tools to effectively evaluate data specific to epilepsy and autism.
4) Identify and develop animal models, biomarkers and assessment tools that inform outcome in infants with epilepsy that go on to develop autism and infants with autism that go on to develop epilepsy.
5) Explore the underlying mechanisms of convergence between autism and epilepsy.
6) Coordinate tissue and brain banking efforts in epilepsy and autism.
7) Develop behavioral and pharmacological treatment models and methods in infants with epilepsy and autism (or with one and at risk for the other).
These aims are indeed important for taking the next research steps, however, the fortitude of parents in a time of crisis may be the greatest contribution toward advancing our understanding of sudden death in epilepsy and autism. If you wish to learn more about the Autism Tissue Program, or want to share a story and participate in a survey about sudden unexpected death of a family member with ASD, please go to their website for more information or email firstname.lastname@example.org.
Read the press release on the Journal of Child Neurology publication here.
A buzz filled the room yesterday as BTIG traders raised money for several charities, including Autism Speaks. Celebrities greeted traders, their children, and invited guests. All of the profits from the day’s trades will be donated to the charities. Autism Speaks President Mark Roithmayr, Board member Alison Niederauer, her son Liam and husband Duncan, were there with our celebrity friends, Corey Louchiey and Howard Cross, veteran NFL players and loyal supporters of Autism Speaks.