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Posts Tagged ‘Awareness’

Weekly Whirl – Autism Swag!

February 17, 2012 3 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

This week we wanted to focus on autism swag! We all know that awareness is key and these awesome people show us how they do it! 

Tracy R

Ruth Ann Luna

Nicole Persaud Settles

Julie McDonald Gilmore

Jenny March

The Month in Review: Autism Speaks January 2011 Impact

February 7, 2012 Leave a comment

January got everyone off and running quickly as we ramped up several new programs and initiatives for 2012 and literally hit the ground running.

In late January, the New York Times broke a story about the proposed DSM-5 change that triggered an avalanche of discussion, concern and more. To get the latest, catch up on Autism Speaks DSM-5 policy statement and FAQ.

Enjoy this month’s impact highlights!

Science

DSM-5

Autism Speaks issues DSM-5 Policy Statement

 

  • Top Ten January proved to be another lively month, beginning with continued media coverage of our Top Ten Autism Research Achievements of 2011 and the publication of Geri’s annual letter from the CSO. The month culminated with considerable media coverage and community concern about proposed revisions to the medical definition of autism spectrum disorder in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Understandably, our families are concerned about the potential implications for diagnosis and access to services, and our science leadership has been providing perspective through national media as well as our own blog and a heavily attended webchat. We will be working hard to ensure that the DSM changes do not exclude access to needed services.
  • Adults with Autism  We hosted “Adults with Autism: Sharing Ideas, Filling the Gaps,” a research summit focused on adults development, services, and treatments.  Held in North Carolina, we brought together major donors, scientists, clinicians, and staff to discuss the research Autism Speaks is funding that is investigating what factors lead to the best outcomes in autism, lifetime trajectories, and new services and treatments.  Read all about this incredible and unique event on our science blog.
  • Ireland On Jan 12-13 We held an international conference “Autism Spectrum Disorders: From Clinical Practice to Educational Provisions” at the Irish Centre for Autism and Neurodevelopment Research at the National University of Ireland, Galway. More than 600 delegates from around the world attended. You can read more on the science blog.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

House in Hand Autism Speaks

Housing and Residential Support Tool Kit

 

  • Community Grants Our Family Services Community Grants recipients for 2011 were announced on January 24th. Over $1 million in awards were issued to 53 community services organizations in the United States and Canada. The focus of the Family Services Community Grants is to promote autism services that enhance the lives of those affected by autism while expanding the field of service providers. The next round of Family Services Community Grants will be announced in February.
  • Video Glossary On January 5th, we launched an updated version of the Autism Video Glossary – a section on autism treatments. Like the first phase, this was a collaborative effort between Autism Speaks, First Signs and Florida State University. The new treatment section expands the Video Glossary’s library with the inclusion of more than 100 video clips from actual therapy sessions illustrating 22 treatments that may be used to help children with autism build skills, connect with peers and family members, and reduce challenging behaviors. It offers families a window into the various treatment options, provides a description of each method, and lists the top five research studies supporting the treatment and where to find more information. Professionals will also find the treatment section useful when working with a family to determine the best course of treatment for a child with autism.
  • Housing We also launched our Housing and Residential Support Tool Kit in January. The tool kit includes a written guide, a catalogue of residential options and supports, featured house of the month, housing resources and housing in the news.   Our hope is that this tool kit will provide information to individuals with autism and their families as they thinking about housing and residential support options.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Military families sound off Autism Speaks

Military families sound off for autism

  • Military Families Sound Off Military families finally got their say before Congress about the shortcomings in their autism insurance benefits, including the loss of all autism benefits when they retire. Autism Speaks helped organize the event and rally military families to the Capitol Hill briefing which resulted in an overflow room. Rep. John Larson of Connecticut, who is sponsoring the Caring for Military Kids with Autism Act, called the plight of America’s military families raising kids with autism “immoral.”
  • And They’re Off!  Autism insurance reform campaigns in the states have launched with new bills introduced in Utah and Nebraska, a bill expanding existing benefits launched in Vermont and a bill protecting coverage for Applied Behavior Analysis already voted out of the Virginia Legislature and on the desk of Governor Robert McDonnell. Autism Speaks has spearheaded autism insurance reform campaigns nationally that have resulted in 29 states representing 70 percent of the U.S. population now protected by such laws.
  • ‘Show Me’ State Shows the Facts on Autism Insurance The Missouri Department of Insurance has released an analysis of its year-old autism insurance reform law showing that the impact on premiums was 0.1 percent, a fraction of the 3 percent impact used by insurance industry lobbyists in their efforts to defeat such laws. The Missouri analysis was consistent with findings Autism Speaks has gathered from five other states showing that the implementation of autism insurance coverage has minimal impact on premiums.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Colgate University’s Women’s Hockey

Colgate University’s Women’s Hockey supports autism research

  • Gooooooaaaaal! In collaboration with Autism Speaks U, Colgate University’s Women’s Hockey team is hosting their 2nd annual Autism Awareness Project on February 3, 1011. This project is in support of their team manager, Kati Williams, who is a local teenager on the autism spectrum. Through their various fundraising and awareness efforts they hope to have over 1,200 fans attend the game to help shine a bright light on autism.
  • T-shirt Madness Autism Speaks was introduced with a unique and innovative fundraising opportunity with the company Sevenly. Sevenly designed a custom t-shirt for Autism Speaks and used social media to spread awareness and raise funds! Learn more here and be sad that you missed your chance to get a shirt!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Weekly Whirl – Tattoo Time!

January 13, 2012 22 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

Who says you can’t be creative with spreading autism awareness? These awesome folks submitted photos of their tattoos – yes, you read correctly, TATTOOS for their loved ones who have autism. Have a look, tell us what you think!

Melissa Fuller

“For my son Brayden. Just done yesterday. Done in invisible ink that will glow. The tattoo artist said people wil wonder where the key is, I said we are still searching for it.”

Julie Burke

“♥ :)”

Jennifer Rae Sawyer

“Got this for my middle child, Isaiah, who has autism. He is such a blessing! :)”

 

Korban Trautman

“Got this for my brother a few years ago, just felt like sharing.”


Tim Greninger

“For my God Daughter…..”

 

The Month in Review: Autism Speaks December 2011 Impact

January 5, 2012 1 comment

Happy New Year and welcome to 2012! December was a busy month, with lots of last minute fundraising and grant activity. This month’s “impact” post includes updates from across the organization. We hope the holidays were great for you and yours! As usual, this post is filled with top items from last month that we think made an impact for the community.

Science

Autism Speaks Science Top 10

  • Tokyo The science team kicked off the month with a trip to Tokyo, where we attended the Joint Academic Conference on Autism Spectrum Disorders, co-hosted by Autism Speaks and the Japanese National Institute of Mental Health. The meeting was a great stepping stone in building collaborative scientific relationships with Japan’s autism community.
  • Grants This month, we also announced over $13 million in grants for 47 autism research projects including identification of environmental influences and early biomarkers, the development of better autism animal models, the creation of the world’s largest whole genome autism library, studies on adult development and support, and updates on the cost of autism coupled with calculations on how specific services can reduce lifetime costs. We are especially pleased to announce our funding of the first U.S. autism prevalence study to use total population sampling methods. This study, developed in collaboration with the CDC, follows the lead of last year’s ground-breaking study in South Korea, which found an autism prevalence of 1 in 38 among schoolchildren, most of them previously undiagnosed.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Autism Safety Project

  • Autism Safety Project This month, we added three new sections to the Autism Safety Project portal on our website. The Safety in the Community page consists of tips and resources specifically for a variety of simple experiences and activities that take place in the community such as Interacting with Law Enforcement, Asking for Help, Playing in the Neighborhood and many more. In addition, for the Safety in the Home page, the Ohio State Medical Center, a recipient of one of our Family Services Community Grants created Safe Signals, a tool kit and video designed to promote fire and burn safety for older teens and young adults with autism. We also included a section on sexual abuse that contains information on how to talk about sexuality, how to prevent sexual abuse, warning signs of sexual abuse, and more.
  • AutismCares Through a generous donation from HP this month, AutismCares was able to give out ten Slate 2 tablets to families in need. Tablets like the Slate 2 have been found to be extremely helpful in improving communication skills of individuals with autism. We received a record 2,400 applications for these life-changing devices. Stay tuned for more technology giveaways in January!

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

CARA signing

  • CARA Persistence pays off! Over the past summer, Autism Speaks energized advocates across the country to urge Congress and President Obama to renew the landmark Combating Autism Act. Because of that hard work, President Obama has signed an appropriations bill approved by Congress that provides $230 million in new federal funding for autism research and services, the first of three new annual installments.
  • Speak Up! Make your voice heard! The federal government is now implementing the sweeping 2010 Affordable Care Act reforming American health care. How that law is implemented could profoundly affect insurance coverage for autism diagnoses and treatments. Learn more about the law and what you can do to protect autism benefits here.
  • Military families raising kids with autism can lose their benefits when they leave active duty. Autism Speaks has helped organize a Jan. 31 Congressional briefing on the Caring for Military Kids with Autism Act which would end that inequity. Learn more about this vital issue here.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Blue Tie Blue Jean Ball

Blue Tie Blue Jean Ball

  • LOL On Monday December 5, 2011 Autism Speaks and New York Center for Autism (NYCA) honored iconic fashion designer Tommy Hilfiger for his commitment to increasing awareness and support of the autism community at A Funny Affair for Autism – a star-studded evening of fashion and comedy that helped raise over 1.3 million dollars for individuals with autism and their families.
  • Blue Tie Blue Jean Ball On December 1, the Los Angeles Chapter of Autism Speaks held the inaugural Blue Tie Blue Jean Ball.  In looking back at what made the event so amazing, I attribute it to four key elements: vision, focus, determination, and teamwork.  Over 700 people packed the House of Blues on the world famous Sunset Strip to hear the incomparable, beloved and ever gracious Sarah McLachlan sing some of her biggest hits.  She was introduced by autism mom and Grammy Award-winning singer Toni Braxton.  The show was hosted by comedian Sinbad, who also handled the live auction with humor and zip.

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

The Month in Review: Autism Speaks November 2011 Impact

December 1, 2011 Leave a comment

Happy Thanksgiving and Happy Holidays to you and your family! This past month has been a whirlwind of activity here at Autism Speaks and we wanted take the opportunity to give thanks to the many collaborators who work with Autism Speaks in a variety of ways; from content partners to research providers to corporate sponsors and marketplace vendors – you all help us every day accomplish our vision and mission. Thank you from the bottom of our hearts and from the Autism Speaks staff and board.

Meanwhile, November was a busy month that featured global science outreach, an update to the resource guide and much more.

One of the common (and terrific!) questions we get is how does research help your child today. We recently posted a terrific blog about just that topic that we highly recommend you read!

“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.”

Have a wonderful holiday season with your family!

Science

Autism Speaks in Shanghai

  • To China, and Beyond! The science department’s highlights for November begin with the science leadership’s historic trip to Shanghai, China. Our colleagues there were eager to hear about new research and treatments being developed in North America. We were impressed with their technological prowess. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research.
  • Neuroscience Conference Update Our VP of Translational Research, Rob Ring, Ph.D., and Assistant VP Head of Medical Research Joe Horrigan, M.D., attended the annual conference of the Society for Neuroscience, which began with a special three-day satellite symposium on Autism Spectrum Disorders—from Mechanisms to Therapies. As part of the this symposium on translational research, Autism Speaks co-sponsored the publication of two watershed documents: SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages; SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism sub-types and syndromes. Both documents are now available for free download from our science page.
  • Awards We are pleased to share the news that the American Public Health Association has bestowed the Rema Lapouse Award for exemplary work in psychiatric epidemiology to longtime scientific advisory committee member Ezra Susser. Ezra is also one of the powerhouses behind our initiative for Global Autism Public Health (GAPH). Congratulations Ezra!

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Enzo’s mom talks insurance

  • Updated… Autism Speaks Resource Guide This month, Autism Speaks launched the updated version of the Resource Guide, one of the most popular and valuable tools on our website that makes it easier for families to search for resources in their areas from early intervention services, to employment programs, to social skills groups, and much, much more!
    • The new version contains better URLs, updated resources, a bigger map, and the ability for families to share resources on Facebook and Google+.
    • Do you provide or are you aware of services in your area for individuals with autism? Let us know! The new Submit A Service form allows service providers to add their information to the Resource Guide, and gives families the opportunity to input information about resources they have found helpful in a simple and organized way.
  • Autism Speaks Live! Announced here for the very first time, we’re “re-branding” our live chats as “Autism Speaks Live” and developing even more exciting programming in 2012 for you to get educated, be entertained and to join the conversation. This past month we had several live chats including some new topics.
  • Office Hours: Family Services style Each Wednesday at 3PM EST, the Family Services team is available for Office Hours sessions to answer all questions from the Autism Speaks community. Join the conversation!

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

The Autism Response Team continues to answer hundreds of emails and phone calls each month from families and individuals with autism. If you have any questions or need assistance or information, please feel free to call us at 888-AUTISM2 or email us at familyservices@autismspeaks.org.

Advocacy

Autism Law Summit

  • A Better Life Parents saving for their child’s college education can take advantage of tax-free “529” accounts to prepare for the future. Parents raising children with autism or other disabilities could soon take advantage of the same tax-free mechanism if newly introduced bipartisan legislation is enacted by Congress. The Achieving a Better Life Experience (ABLE) Act was introduced in the U.S. Senate and U.S. House of Representatives with the support of Autism Speaks, The Arc, the National Down Syndrome Society and other leading disability advocacy groups. Under current federal law, individuals with autism risk losing all of their benefits if they have more than $2,000 in assets in their name.
  • Washington Watch The U.S. Department of Health and Human Services has begun the process of implementing the sweeping federal health care reform law enacted in 2010, a process that could have profound consequences on how autism treatments are covered through insurance. The HHS is determining what services should be included in the “essential benefits” that health plans will be required to cover. Meanwhile, the Congressional “Super Committee” that was to recommend federal budget cuts collapsed without an agreement, placing in jeopardy significant future funding for autism research and services. Autism Speaks is closely monitoring these developments. You can too at our Federal Initiatives page.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

  • New PSAs features Tommy Hilfiger and Jamie McMurray In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.
  • Light It Up Blue in November! On November 29th San Francisco 49er Running Back Frank Gore and recording artists Pia Toscano & Andy Grammer participated in a holiday tree lighting at San Francisco’s famed 555 California Street. The free event was open to the public and benefited Autism Speaks.
  • Google+ Already a fan on Facebook, and a follower on Twitter? Circle us up on Google+ to complete the trilogy! We’re just getting started on Google+ and love how it even further connects us to you, our community!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Autism Awareness and Strategies for Public School Administrators

November 29, 2011 20 comments

Elizabeth V. Neumann, M.A., BCaBA

I was recently reflecting on my teaching career when selecting a topic for my master’s thesis. I wanted to focus on an area that could really make a difference for students with ASDs like the ones I had worked with. I believe I was most effective when I worked with administrators who understood what an autism diagnosis truly entails and what best practices are for these students. Now that I educate other school professionals through the nonprofit agency, Autism New Jersey, I have met many other teachers who share this view, as well as administrators themselves who recognize their critical role in this area. So I chose to research public school administrators’ current level of understanding of autism spectrum disorders. My graduate work was consistent with Autism New Jersey’s mission. As a training resource for parents and professionals for decades, my colleagues and I recognize that a key to effective school programs is consistent support from administrators, and we sought to learn more about their specific needs.

For my study, more than 300 public school superintendents, principals, and special services directors completed surveys. Their responses offered a wealth of information about their knowledge of autism, scientifically-validated strategies, and their strengths and challenges insupporting their staff and students. The data showed that most administrators have very little, if any, training in meeting the complex and unique educational needs of students with ASDs. This is through no fault of their own as there are no requirements pertaining to specific special needs in their certification programs, despite the fact that they are responsible for increasing numbers of students with autism. As school leaders, they make budgetary, curricular, staffing, and scheduling decisions that have a direct effect on students with ASDs without being equipped with evidence-based information that could guide them.

These data guided our development of workshop and publication content focused on the following areas: learning about autism and students’ educational needs; maximizing limited resources by identifying evidence-based practices; supporting staff of diagnosed students in all placements across campus; and providing an extensive list of resources across these topics. Through the partial support of an Autism Speaks Family Services Community Grant, we offered ten free workshops specifically tailored to this underserved yet crucial group of stakeholders in the autism community. Autism for Public School Administrators: What You Need to Know was sent to all special services directors in New Jersey as well as all workshop registrants.

This top-down approach to improving educational services has been very well-received by the participating administrators and the autism community at large. Participants have been most appreciative of this information, and it has been encouraging to see their desire to maximize their offerings to students with ASDs, their families, and the school professionals responsible for their education. One administrator summarized, “Your workshop gave me a terrific overview of autism – hopes and challenges – as well as a broader scope of the input and expertise necessary to sufficiently contribute to the independence of a student with autism.”

Parents and teachers, please encourage your superintendents, principals, and special services directors to order a free copy of Autism for Public School Administrators: What You Need to Know by calling 800.4.AUTISM or visiting www.autismnj.org. We hope that this initiative will be a valuable step to helping public school programs meet the intense needs of students with ASDs and are pursuing additional funding to continue and expand it on behalf of students with autism.

Please note that while the survey responses came solely from New Jersey, the information found in the workshops and publication is likely to be of great value to administrators throughout the country.

 

For more information about the Family Services Community Grants program, visit http://www.autismspeaks.org/family-services/grants/community-grants

Be Aware – For Parents

November 24, 2011 7 comments

This post is by Tim, a freelance writer and designer who works for Myself, a business that has been thumbing its nose at The Man for six years now. He’s both a stay-at-home (sounds better than ‘kept man’) and a work-at-home-and-anywhere-else-I-can-get-away-with-it dad. You can read the original post here.

[This is Part III of today’s three-part series, along with Be Aware – For Family and Friends and Be Aware – For Everyone, for World Autism Awareness Day.]

Be aware that you are not alone. Be aware that there are entire communities of us – locally, online, everywhere – joining together for solidarity, support, and advocacy.

Be aware that we’ve got each other’s backs.

Be aware that not only is grief a normal part of this, it is required. Give yourself permission to go through it.

Be aware that your child is the same precious soul as the newborn baby you once held.

Be aware that some days you’ll feel like you can’t do it, but you will.

Be aware that we’re now free from being average, and are instead free to kick butt.

Be aware that autism allows amazing gifts to be expressed that otherwise would not be.

Be aware that your child will achieve something after trying so hard for so long, and you’ll feel like you all won the World Series. Be aware that this will happen regularly, and often when you least expect it.

Be aware that some days you will float on air and feel like anything is possible.

Be aware that often it is also a desperate marathon. It can feel like 26.2 miles over and over again, and you’re wearing six layers of drenched corduroy, while carrying a dump truck on your back.

Be aware that you only have to go one step at a time.

Be aware that being angry or afraid or frustrated or burned out or desperate is completely normal. If you feel completely crazy, be aware that someone else is too; it’s only when you either feel sane or feel nothing that you might want to worry.

Be aware of words like hope, advocacy, determination, community, faith, love, and perseverance, and don’t forget them.

Be aware that one thing unites us and transcends everything we disagree on – the children we love.

Be aware that there are people preying on our fears and becoming rich off of that. Be aware that there’s a special place for them, and it’s not a particularly nice one.

Be aware that autism is never the same from day to day or person to person.

Be aware that our children grow into adults and that we must fight for the rights of all.

Be aware that autism will lead you to some of the kindest, most skilled, and compassionate people in the world.

Be aware that by accepting the challenges you will experience an even greater joy when they are overcome.

Be aware that life can feel like a constant fight against somebody or something; be aware for whom you are fighting and draw strength from that.

Be aware that everyone we meet is fighting a great battle in their lives, regardless of who they or their children are. Be gracious, and model that for your kids.

Be aware that the sun does come up every morning.

Be aware that you are stronger than you think you are.

Be aware that some days all you can do is just roll up your sleeves, hike up your big boy or girl pants, and dive in.

Be aware that love is always the best therapy.

Be aware that you should never say never.

And be aware that I wouldn’t trade my life for anything.

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