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Posts Tagged ‘Family Services’

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!

A Word from Family Services: Autism and Driving

January 12, 2012 6 comments

On Monday, January 9th, the Children’s Hospital of Philadelphia (CHOP) Center for Child Injury Prevention Studies announced a new study focused on how teens with high-functioning autism approach learning to drive. According to the study which surveyed almost 300 parents, two-thirds of teenagers with a high-functioning autism of legal driving age in their state are currently driving or plan to drive.

The CHOP study represents exciting news for the autism world! Not too long ago, many families were given little to no hope that their children would develop the skills that are necessary to drive. This is exciting news for the autism community, as an individual’s ability to drive can play a big role in establishing independence and increasing opportunities for participation in the community.

At the same time, there are a number of critical precautions that must be taken to ensure the safety of individuals with autism and the rest of the community when learning to drive. So while we embrace this exciting opportunity, we know that driving may not be an option for all living with autism.

In order to help our community explore the possibility of driving, Autism Speaks awarded a Family Services Community Grant to Beth Israel Deaconess Medical Center in 2011 for project called DriveAdvise. This project involves the development of a tool kit and an educational video that will help families decide whether an individual with ASD might consider driving. The video will interview individuals, family members, service providers and driving instructors and will provide us with an in-depth look into the factors that contribute to the potential and the skills necessary to help qualified drivers with high functioning autism get behind the wheel. Read more about the grant here.

Autism Speaks will provide the tool kit and video on our website as soon as this exciting project is completed.

by Lisa Goring, Autism Speaks Vice President, Family Services.

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!

Updated Searchable Grants Search Now Online

December 14, 2011 2 comments


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.

Family Services Office Hours – 11.30.11

December 1, 2011 2 comments
3:02
Hello everyone and welcome to this week’s Office Hours!
3:03
The Autism Response Team is here and ready to answer your questions and provide you with some great resources!
3:08
Submit A Service
Do you have a service you’d like to add to the Autism Speaks Resource Guide? Click here to complete the submission form!
http://www.autismspeaks.org/family-services/resource-guide
3:09
Comment From Bridget

My granddaughter who I raise has P.D.D. N.O S. she screams alot and has started to throw things and kick. Her schedual has be out of wack this week is a strong schedual important for her behavior problems?

3:11
Hello Bridget
YES!! Many children with autism depend on a routine schedule that is predictable. but its also important to mix and vary activities in order for the person to get used to variety of activities.
3:12
Also Bridget – we have recently published a grandparent tool kit
3:12
Comment From Heidi

Hello, my son is high functioning ASD and wiil be getting an iPad soon. I have been looking at various blogs, articles and sites for apps that he can use but was wondering if you have any recommendations? Looking mostly for eye contact, social, and speech. Thanks!

3:12
Hi Heidi! We have a great list of Apps for Autism in our Resource Library. These are apps that have been submitted to us by families or professionals who have found them very helpful! In addition, at the bottom of the page, there are links to many other lists of app recommendations from other autism organizations.http://www.autismspeaks.org/family-services/resource-library/autism-apps
3:13
Comment From amber

my son is 13 and high functioning but still cannot tie his shoes or place on right feet

3:17
Hi Amber – Your son is right at the start of the Transition age- and you are absolutely right to make sure he can complete his self care and dressing himself independently. I would suggest making “shoe tying” a objective in your son’s IEP. There are many different instructional methods to teach these self care skills, it will be important to determine the best one to teach your son.
3:17
Amber- In addition we have have recently published a Transition Tool kit.
3:18
Comment From Bobbie

I am not a parent but I am a psychology major. I am planning to complete my ABA certification in the next two years. I am currently working with Autistic children and their families through local groups and organizations. Are there any “good” or “proven” resource sites/books that you recommend that I use in order to gain information and useful methods for working with these individuals.

3:18
Hi Bobbie. That is great to hear you are working with children with autism. We need more people like you! We do not endorse any very specific resources, however we have lists of books and tools for professionals on our website that people have submitted to us because they have found them helpful in working with children with autism. You can check out these books/tools at the 2 links below: http://www.autismspeaks.org/family-services/resource-library/books#professionalshttp://www.autismspeaks.org/family-services/resource-library/tools-professionals
3:18
Comment From Jennifer S

First off. Thank you for taking the time to help!! Heres my question. My 4 year old son has autism. We are having a really hard time potty training. He will use the potty but ONLY IF he has on NO clothes at all. If he has any article of clothing on he will use the bathroom on himself. We tried going potty every 15 mins, but that still doesn’t help. My husband and I are just out of ideas and really don’t know where to turn to for help..

3:23
Hi Jennifer- Hang in there, all your time and effort will be worthwhile when your child is successfully potty trained! I would suggest you consult with your Pediatrician and your son’s school based team. This is a skill where you need to work with the classroom teacher, to make sure you are both on the same page.
Also, the Autism Treatment Network (ATN) will be publishing a Tool Kit in early 2012 on Potty Training for Individuals with Autism. Check back on their webpage early 2012.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:23
We do not endorse any specific materials, but here are 2 books that have been submitted to our Resource Library from families who have found them to be helpful with toilet training: http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523http://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:24
Comment From Susan

My daughter takes Vyvanse and Celexa for the past year. I do think they help her but how long is it safe or recommended to remain medicated?

3:24
Hi Susan. Every child is different and every child responds differently to different medications. Our Autism Treatment Network team just released a Medication Decision Aid Tool Kit called Autism – Should My Child Be Taking Medication for Challenging Behavior?. We have gotten great feedback from this resource, as many of families in the Autism Speaks community have found it to be very helpful!
3:25
Comment From Mary

I have a 12 yo aspergers boy. Yesterday was written up for saying a curse at 13 yo girls who were bothering him – the problem is his perception of the situation – he felt attacked. He wasn’t really wrong (per his teacher) but I do need to disapline for the language. I am running out of disaplinary actions (have restricted everything – nothing makes an impact). What can be utilized to get the message across, and help him to have a better perception of situations?

3:27
Hi Mary- As you know, there is no easy answer to your question. Does your son have support in developing appropriate social skills? I would ask to include a social skill goal in his IEP so that it can be addressed and his progress documented.
3:28
In addition, I would suggest 2 tool kits we have: our Asperger Syndrome/High-Functioning Tool Kithttp://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:28
and our Transition Tool Kit for children with autism transitioning to adulthood: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:30
Comment From Cassie

My son is 19, HF, and rather obsessed with our football team’s win-loss record. we’ve had 0-11, 0-10. gets mighty upset about it. Is there anything I can do besides redirect? Concerned because next year he’ll be living away from home, need to help him do it himself.

3:33
HI Cassie – Does your son have a counselor or a support person he can discuss these kinds of issues on an ongoing basis. It might be a good idea if he is planning a transition to have someone to talk with about his these upcoming changes.
3:33
Here is a link to our Transition Tool Kit. You can order a copy free of charge on our website: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:34
Comment From Guest

Hi. Do you have any guidance addressing problem behaviors (ex. hitting, punching, pinching, screaming) in preschool/early school years?

3:37
Hi- I would request an IEP, and ask his Team to address these problem behaviors. It very important to understand the functions of the behaviors and have a detailed plan in place that everyone on the team is in agreement with. Its also important to track the data to make sure the plan is working.
3:37
Here is a link to information about Applied Behavior Analysis from our website: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba There is also a list of other treatments on the left side panel as well.
3:38
If you are looking for resources in your area, we have a list of ABA and other service providers, as well as social skills groups and afterschool programs, in our Resource Guide:www.autismspeaks.org/resource-guide
3:39
We also have a list of books related to teaching increasing social skills and decreasing challenging behavior on the Books page of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/books#socia
3:40
We hope these resources are helpful to you!
3:40
Comment From Guest

my daughter is 7 and has PDD-NOS and tends to repeat phrases a lot. Is there anything that we can do to stop this?

3:42
Hello Guest- I would recommend you request a Speech and Language evaluation, in order to gain a full understanding of your daughter’s echolalia, and a plan to implement. You can locate a Speech and Language professional in our online Resource Guide.
http://www.autismspeaks.org/family-services/resource-guide
3:43
You may also want to include speech therapy in your daughter’s IEP. You can read more about IEP’s and how to get what you and your child need most with them athttp://www.autismspeaks.org/family-services/community-connections/back-to-school
3:44
Comment From debbie

how do I tell if my 15 year old who is failing school by not doing homework and studying is really struggling or is being lazy? I have done everything I can think I can to monitor his grades and homework and he always says he is done.

3:49
HI Debbie- Its sounds like you’ve been working very hard to help your son. I would suggest you get some support by calling an IEP or working together with this teachers. Its important that counselors, teachers, etc., be part of the plan One suggestions might be that he complete his homework at school after school hours. I am including a link to the transition Guide, as a parent you can get a free copy mailed to you.
3:51
Comment From Guest

Hello everyone, my son is 10yrs. HFA . I have not have the talk with him yet of him having autism…how should I start what should i do,,I am afraid of what reaction he might have.

3:52
Hello-IAN – Interactive Autism Network has some great article on Telling Your Child About Autism.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd
3:53
In addition we have lots more information about AS/HFA including a section on AS/HFA and your Family in our tool kit:http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:55
Comment From Rechelle

What is a successful way to discipline a child w/Aspergers and HFA? I am not a spanker.

3:58
Dr Tony Attwood, author and therapist, is an expert on this subject–
How do you discipline a child with Asperger’s Syndrome?
http://www.autismsupportnetwork.com/news/how-do-you-discipline-child-aspergers-syndrome-autism-203392344
3:59
Comment From Guest

Any suggestons as to how to explain to my 6yr old that my 4 yr old has autism and he really cant help some of his behaviors. Im just not sure how to start that “talk”.

3:59
Hi Guest. You can read more about disclosing autism to your child and other family members at our IAN site: Telling Your Child. It has a section on telling siblings.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd. We have also recently launched a Siblings Tool Kit (in addition to a Parent, Grandparent and Friend Tool Kit) for children ages 6-12 that helps families explain autism to their siblings. You can download the kit for free and view other resources at:http://www.autismspeaks.org/family-services/family-support-tool-kits#siblings. We also have a list of Books for Siblings athttp://www.autismspeaks.org/family-services/resource-library/books#siblings
4:00
Thank you all for joining our Office Hours chat today! If we have not been able to answer your questions, please feel free to call us at 888-AUTISM2 or email us atfamilyservicse@autismspeaks.org.
4:00
We are always happy to help!
4:00
See you next week!

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!

The Month in Review: Autism Speaks October 2011 Impact

November 3, 2011 5 comments

Last month we tried an experiment… we attempted to recap the most important, relevant things going on around Autism Speaks to give you some insight into the breadth and depth of our organization; and to solicit your feedback. Thank you for your incredible responses and questions!

One of the more common questions we get (similar to the one that Kristine on Facebook posted) is, “What can Autism Speaks do to help my family today?” It’s a great question!  We understand that families are struggling and are looking for help and information. Using an “evidence-based science” approach, we seek to deliver useful information, tools, and resources for families that they can immediately use, such as the 100 day and transition kits. Programs such as Advancing Futures for Adults with Autism provide resources across the lifespan. Not only do we provide a wide collection of tools, we also staff the Autism Response Team which is available to answer your questions via email, phone and online chat! They can be reached via email at familyservices@autismspeaks.org or 1-888-AUTISM2. Kristine, that’s how we help families today, while we continue to increase awareness about autism, advocate for more funding for research and services, and fund innovative research projects that are developing improved treatments and services for people with autism.

If you know of other things that might be helpful to another family, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Illustration by Gracia Lam

Illustration by Gracia Lam

  • We’ve got an MD on staff!  This month, we hired Joe Horrigan, MD to head up Autism Speaks’ medical research.  His charge is to spearhead the development of new medicines and other treatments that can help people with autism communicate and learn better and address some of the medical conditions associated with autism, such as GI and sleep problems.  Welcome, Dr. Horrigan!  Look for him on our Science blog.
  • Leading the Way Autism Speaks is leading the way in developing an enhanced Autism Tissue Bank that will accelerate the discovery of the causes and new treatments for autism.   Autism Speaks Autism Tissue Program (ATP) featured prominently in a feature story in the prestigious science journal, Nature, on the tissue bank shortage and how a small handful of organizations such as Autism Speaks are working to fill the void and speed research that can help individuals and families struggling with neurodevelopmental disorders such as autism.
  • World’s Largest Genome Library will be created by Autism Speaks and the Beijing Genome Institute.  Autism Speaks and  announced an agreement to create the world’s largest library of sequenced genomes from persons with autism spectrum disorders (ASDs). Multiple stories have appeared in the U.S. and China. The journal Nature interviewed Andy Shih on the agreement, as did Genome Web Clinical Sequencing.
  • Got Hours? Geri Dawson held her first “Office Hours with the Chief Science Officer” which featured guest host and renowned geneticist Steve Scherer, PhD, who addressed the question: What do the new findings in genetics mean for my family?  Dr. Dawson will be holding monthly office hours and the next one will be on the topic of new approaches to early intervention, scheduled for the first week of December Read the transcript.

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

  • Employment October is National Disability Employment Awareness Month. We highlighted the Jay Nolan Community Services Employment Tool Kit that was funded by one of our Family Services Community Grants. Other employment-related activities included question of the week on Facebook and live chats with:
  • New Toolkit Alert New Tool Kit Alert – in an effort to provide information and encouragement to all people with individuals with autism in their lives, Autism Speaks has several new Family Support Tool Kits. The purpose of each kit is to help teach family members and friends more about autism and provide resources and supports to each group. New kits include:
    • Parents
    • Siblings
    • Grandparents
    • Friends

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

Signing in NY

Signing in NY

  • New York Autism Speaks Co-founders Suzanne and Bob Wright stood alongside Gov. Andrew Cuomo as he signed legislation making New York the 29th state to enact an autism insurance reform law.  The New York law is one of the strongest in the nation, setting no caps on age or visits for behavioral treatments. Governor Cuomo credited Autism Speaks for its leadership role in winning enactment of the legislation.
  • California We (all of us) did it! A major campaign was launched to ask Governor Brown to sign SB.946, the autism insurance reform bill, into law. Because of California’s significance as the most populous state, we asked advocates in the other 49 states to participate by recruiting their friends and family in California to participate. Thousands of emails were sent into Governor Brown and over 1,000 people left comments on his Facebook page as well. Every possible method to get through to him was deployed, including a successful political cartoon campaign. The cartoon was printed as 750 posters and distributed at the Oct. 9 Sacramento Walk, the day the bill was signed by Governor Brown making California the 28th state to enact reform.
  • Michigan Our attention has now turned to Michigan where we are urging the state’s legislative leadership to move a pair of autism insurance reform bills before the year’s end. We need your help! If you are in Michigan, or know someone who is please text “AVotes” to 30644 and we’ll alert you when we need your help!
  • Autism Law Summit The 6th Annual Autism Law Summit attracted 100 activists from 33 states to Salt Lake City. The event highlights efforts to obtain insurance benefits for necessary autism treatments through legislation, litigation, and encouraging employers with self-funded plans to include the benefit for their employees. During the summit, we celebrated Arkansas, California, Rhode Island, Virginia and West Virginia for enacting reform bills during 2011.

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

60 Minutes Apps for Autism

60 Minutes Apps for Autism: image from CBS

  • Apps for Autism The producers of 60 Minutes consulted extensively with Chief Science Officer Geri Dawson and VP of Scientific Affairs Andy Shih in preparing a special segment on autism applications for communication, which aired Sunday, October 23rd. The full show can be found on the CBS News website.
  • Parents Magazine The October 2011 issue of Parent Magazine featured an interview with Autism Speaks Chief Science Officer Geri Dawson in an article entitled “Understanding Autism.” The piece encouraged parents to pursue an early diagnosis of autism in their children and highlighted the beneficial outcomes that early intervention and treatment can bring to a child diagnosed with autism.  To read an excerpt from the article, click here: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diagnosis/
  • Extreme Makeover: Home Edition On Friday, October 28, ABC “Extreme Makeover: Home Edition” aired an episode featuring the McPhails, an Oregon family with two sons affected by autism. In addition to tackling home improvements, the EMHE team worked with Autism Speaks to rally the local community to raise autism awareness in honor of the family. To watch the episode click here: http://abc.go.com/watch/extreme-makeover-home-edition/SH559052/VD55150625/mcphail-family-part-2

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!

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