Autism Speaks Official Blog

This blog post is by Owen, with the help of his mom for the big words.

This past July, I started taking hockey lessons from a new coach at our hockey rink. One of the students he had skating with me was seven year old Cody Smith. Sometimes I did not understand why he would play good on some days and then have a bad day at practice (crying, leaving the ice, not listening to coach). His parents told my mom that Cody was a “special” person. He had something called Aspergers. (To a five year old it was just another big word.)  We became friends and started to do fun things together. To me he was not any different from me or any of my other friends, he had good moods and bad moods too just like we did. He played with the same kind of toys, went to normal school, and even played hockey like I did.

In October, we started planning my 6th birthday party. And even though I was excited that presents were going to be coming, I knew that there was something else better. I have all the toys I want, so I wanted to help Cody and kids that were like him. I told my mom and dad that I wanted to help raise money for Cody. I asked my friends who were invited to bring money to help Autism Speaks to the birthday party instead of presents.

A few weeks ago, I had my birthday party. Everyone had fun bouncing around, eating pizza, having cake and ice cream. Many of my first grade classmates and my hockey team attended. They brought presents for me (even though they did not have to) and also money to donate to Autism Speaks. When mom and dad finished counting all of the money, I had raised seven hundred dollars. My parents tell me they are proud of me for helping out someone else. Cody’s mom and dad told me that I was special for helping out a good cause. I just know that I was helping my friend.

This is a blog post by Dennis Debbaudt, the father of a young man with autism and founder of Autism Risk & Safety Management (link to www.autismriskmanagement.com)

Whether living on the autism spectrum or not, we’re all part of the human condition. As humans, we all need the essentials of everyday life. We all need to work, play and love. We need work that we take pride in. We do our best and reap the rewards of doing so. We need to take a break from work and have some fun. Sports, the arts, taking a walk in the park, playing a game, reading a book. We find activities we like and get a chance to smile and relax while doing so. We need to make friends among family, neighbors, classmates, co-workers and the people we meet along the road of life. And we need to feel safe and secure while pursuing these activities.

Addressing safety and risk can be accomplished by making a plan that meets our unique needs, then making that plan a part of our daily routines.

The ultimate plan will be yours to design with people that you love and trust. The goal? That everyone can work, have fun and friends in a safe and risk free environment!

This month, Autism Speaks has updated the Autism Safety Project and released new information on safety in the home, safety in the community, and sexual abuse and other forms of mistreatment. The Autism Safety Project also includes information for first responders and other professionals who may interact with children and adults with autism. Please consider the information here as a starting point for discussion!  Visit www.autismspeaks.org/safety to learn more!

Today we launched a consolidated grant search engine on autismspeaks.org that contains all of the research and community grants that we have funded since 2006. This comprehensive search gives our community and staff a complete picture of the impact that Autism Speaks has on the community and around the world.

Here are the top 6 features that this updated site includes:

1. Both Science and Family Services grants, with icons to distinguish them
2. Attachments! Contributors to the database can now add attachments describing the outcomes of the grants. This will include research papers and/or links to publications available online.
3. Advanced search that allows for multiple terms and criteria.
4. Customized search and export for offline and presentation use
5. Behind the scenes goodness: Including a “data bridge” to keep the grants up to date

You can find all this goodness here.

By Lisa Murray-Johnson, PhD, The Ohio State University Medical Center and Ohio State University Nisonger Center

“We are grateful he’s alive.” Pat’s voice was strong, but you could still hear the heartache as she described the horrific fire that injured her son John and claimed the life of his roommate and a caregiver. “He was burned over 18 percent of his body and Fred and I knew it would be a long recovery.” As a young adult with autism and other developmental disabilities, John recovered at The Ohio State University Medical Center’s Burn Unit.

I thought I was just having lunch with my colleagues Pat Cloppert and Becky Coffey. I didn’t realize how prevalent burn injuries were among young adults, nor was I aware that Becky had cared for John. Becky Coffey, RN, CNP, is a nurse practitioner in the OSUMC Burn Unit. She said 68 percent of all burn and hot water scalds happen at home. These were the statistics from the National Burn Registry from 2001-2010, a database that records burns from such events as fires, hot water, hot objects and chemicals. The numbers were startling; as many as 450,000 people need medical treatment for burn injuries each year:

• 44 percent of burns are from flame fires.
• 33 percent of burns are from hot water scalds.
• 9 percent are from contact with hot objects.

And these are only the reported injuries. Those who treat their injuries at home without a doctor or hospital visit are not included. It underscores the enormity of the problem.

Pat Cloppert, BSFS, is an advocate and public speaker for family services and autism at The Ohio State University’s NisongerCenterfor Developmental Disabilities. Her life has been to the service of others. But that day, she was a mom. We were three health professionals who were mothers. What if that had been my child?

The Safe Signals project was born. The goal was simple: Create a tool kit with a video, workbook and vinyl clings that would serve as everyday safety reminders. Burn and scald prevention education also has the potential to reduce other household injuries and fires in the home. Diane Moyer, RN, patient education associate director, and fire fighter Jaime Sierra, a public education specialist with Columbus Division of Fire, rounded out our team.

We also needed young adults to help us with this project. It was meant to be a project by young adults, and for young adults. Pat and her colleague Jeff Siegel, MSW, social worker for Aspirations Ohio and also at theNisongerCenter, helped to coordinate young adults on the autism spectrum to join us. Together, we were each other’s teachers and students.

There are so many moments that make the Safe Signals project special: Justin Rooney, our narrator, showing his gift of voiceover work, or Alissa Mangan and Tommi Lee Gillard working to shape the dialogue of the video script so that it felt comfortable. Or the moments when Seamus McCord and Tom Robison worked through the kitchen scene finding humor in overcooked noodles for the macaroni and cheese. And Zoe Castro, our Spanish narrator, graciously helping us navigate cultural sensitivities.

We hope you find the Safe Signals toolkit helpful in looking at your own living space with a fresh perspective. Most safety behaviors take very little time and money. From our homes to yours, we wish you safe living!

• Plan out safety behaviors for each task at home. For example, use oven gloves and pan lids to protect yourself when cooking.
• Practice safety behaviors and place reminders in each room to help you.

• Set the hot water heater or boiler to 120 degrees Fahrenheit (48 degrees Celsius) to avoid burns. Always turn on the cold water first, and then add warm water.
• Create a fire escape plan. If there is a fire, get outside and then call 911. Do not go back inside. Wait for help to arrive.
• Install smoke and carbon monoxide detectors where you live. Test them each month and change the batteries every 6 months.

Note: Pat Cloppert, BSFS, contributed to this blog.

2:58	Hello everyone! Welcome to our Family Services Office Hours! We are here to help answer your questions, and provide you with some great resources!

The Resource Guide is a nationwide database with over 16,000 autism resources that provide individuals with autism and their families with local autism services.

Submit a Service

The Resource Guide continually adds and updates services. We invite you to submit a service that you would recommend to the autism community. Do you have a autism service you’d like to add to the Autism Speaks Resource Guide? Click here to complete the submission form!

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

• 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.

• Research Results A number of our research grants came to fruition this month with high-profile papers in major publications. Among them were Eric Courchesne’s findings on altered prenatal brain development in children with autism (Journal of the American Medical Association) and Schahram Akbarian’s association of “epigenetic” changes with autism (Archives of General Psychiatry). Both studies were made possible by a combination of donor dollars and family participation in our Autism Tissue Program.

• 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

• 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.
• Creative Housing Solutions
• Autism Risk and Safety

• 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

• 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.

• And they’re off! The candidates vying for the presidency in 2012 have begun debating and preparing for the primaries. Autism Speaks has made available its four-part Blueprint for an Appropriate Federal Response to Autism to interested candidates. In addition, we are tracking notable statements and campaign developments as they relate to autism.

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.

• Quotes for Autism Thanks to Allstate, you can get a no obligation, FREE quote on any insurance product Autism Speaks gets $10!

• 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!

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

Kate Bemesderfer is the Lead Instructor, at the Coryell Autism Center, Santa Cruz, CA

Santa Cruz Mountain Brewing (SCMB) has earned a solid and well-deserved reputation for being more than just a purveyor of tasty organic microbrews and sustainable brewing practices. Brewery owners Chad Brill and Emily Thomas and their talented staff play a major role in Santa Cruz, California community-building. They have high standards, open hearts, and a creative, collaborative approach to just about everything they do. So it is fitting that, on top of everything else they do, SCMB is proving itself to be a valuable ally to the disability community by partnering with Coryell Autism Center to provide job opportunities for our students with autism.

When we approached Chad & Emily about offering an internship to Hunter, they took him in and treated him like one of their own, giving him real work and real compensation from the beginning.  No one at SCMB had much familiarity with autism or developmental disabilities, and the learning curve has at times been sharp.  Like anyone, Hunter has the occasional bad day at work, which means that his coworkers have seen him at his most difficult.  That’s why it’s been so impressive to see the staff of SCMB continue to accept and encourage Hunter to be his best.  It turns out that he has the same effect on them.  As Nicole Beatie, who handles Sales & Distribution for SCMB, puts it, “He’s not really different from any of us. He just needs a little more guidance than some, and probably less than others.  Everyone here has been patient and understanding with him, and that has made me feel good about the other folks I work with, too.”

After six months on the job, Hunter is a valued part of the SCMB team, and it’s a team that Hunter likes being on.  Every bottle of beer the brewery produces is hand-labeled by Hunter, who has learned not only to handle the labeling by himself, but to keep track of the inventory, and to set up the tap room and patio in time for opening. He works at the same rate as anyone else (sometimes faster).  He troubleshoots when supplies are missing, mislaid, or malfunctioning.  He keeps track of his work, noticing and correcting errors.  And he interacts both socially and professionally with the brewery staff, becoming an active part of his own community.  With Hunter’s help, the brewery has been getting bigger.  As the brewery continues to expand, so, too, do Hunter’s opportunities.  It’s a lot of work to keep up with the growing demand, so when the opportunity to increase distribution came to the brewery, Chad and Emily came to Hunter.

Not only is SCMB gearing up to open a second pub in Felton, but they’ve recently contracted with Costco—another of Hunter’s favorite places—to create 6-pack gift boxes of their most popular brews. Once the beer is in the bottles and the bottles are in the warehouse, the job of filling the Costco order falls primarily to Hunter.  SCMB has moved their post-production and storage from the small garage where Hunter started to a much larger warehouse a little farther down the road, so he rides his bike to work instead of walking.  Now, labeling bottles is just the first step in a process that involves taping together gift boxes, filling them with the bottles, sealing them with a hot glue gun, and organizing the finished product on a pallet, all while maintaining a retail-worthy aesthetic.  Hunter takes pride in getting it done right and making it look good.  It’s hard work, but it pays off—literally.  Hunter receives both a WorkAbility paycheck and trade from the brewery.  His favorite part of his shift comes at the end, when he returns to the pub for a nice frosty pint…of root beer!

For more information about Coryell Autism Center visit: www.CoryellAutismCenter.org

Autism Speaks’ Family Services is thrilled to be offering an hour live chat with George Braddock, the President of Creative Housing Solutions LLC.  Please join us on Monday, November 21 at 2:00 p.m. to learn about the work that Mr. Braddock has done to advance community living for adults on autism spectrum.

To join the chat – click here!

George Braddock is President of Creative Housing Solutions LLC. He pioneered the implementation of person-centered planning principles to homes for people with disabilities. George provides environmental engineering services for persons with intellectual and physical disabilities, families, providers and governmental agencies.

George brings to this work an extensive construction background from the field with experience gained from the completion of over 1,500 person-centered projects. He has contributed to the closure of three major state institutions adding significantly to this effort by creating community-based person-centered physical environments that work and make sense for the people who will live and work there. More than 1,000 individuals previously institutionalized now live in community in homes developed, designed and or/constructed by Mr. Braddock.

In addition to developing welcoming and inclusive multi-family housing opportunities for people with ID/DD, George’s work involves developing inclusive, authentic community opportunities for people with disabilities.  Further, he has recently published by the State of New York OPWDD: Making Homes That Work: A Resource Guide for Families Living with Autism Spectrum Disorder and Co-occurring Behaviors.