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Military Families Tell Their Stories at Congressional Briefing

January 31, 2012 12 comments

Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when due to being wounded in action. More than 100 members of the military and their supporters jammed into a Capitol Hill briefing today to talk about the special difficulties military families face caring for children with autism.

Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered

 

Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions.  There are good and bad school districts for special education.  Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program.  With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.

Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.

Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.

“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’  But I had no answers for him. I had no hope to offer.”

Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments  and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.

Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”

Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”

Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.

“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.

Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”

You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.


Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here.

Autism in the News – 01.31.12

January 31, 2012 Leave a comment

Virginia approves bill to provide insurance coverage for autistic children – again (Richmond, Va.)
The Virginia General Assembly has passed a bill — again — to provide insurance coverage for families with autistic children. Read more.

Changing The Autism Spectrum (Carbondale, Ill.)
Workers at a local center are applauding the decision to change what classifies as autism. The stricter criteria for diagnosing the disorder will likely mean fewer people are considered autistic. Read more.

Kids with Autism Drawn to Video Games (St. Louis, Mo.)
 A new study by Paul Shattuck, PhD, assistant professor at the Brown School at Washington University in St. Louis, looks at how children with ASDs spend their “screen time.” Read more.

Autistic teenager attacked by robber in Northampton alleyway (UK)
The mother of a teenage boy robbed at knife-point in Northampton has said the ordeal has left the whole family frightened to leave the house. Read more.

2012 Colgate Women’s Hockey Promotes Autism Awareness Project (Hamilton, N.Y.)
The Colgate women’s hockey team will partner with Autism Speaks, ViewSonic and Goals for Good in its 2012 Autism Awareness Project. The Raiders will launch the 2012 project with their annual Light Up Starr Rink Blue event that will take place Feb. 3 in its ECAC Hockey matchup against Union at 7 p.m. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,

Got Questions? The Doctors Will Be In!

January 31, 2012 14 comments

Please join us Thursday Feb. 2nd for “The Doctors Are In!” the next in our ongoing series of monthly webchats co-hosted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D., and our Assistant Vice President, Head of Medical Research Joe Horrigan, M.D.

Held at 3 p.m. Eastern (2 Central/1 Mountain/noon Pacific), this monthly “office hour” will provide ongoing, personal access to two leading clinical experts in the behavioral and medical treatment of autism. Dr. Dawson is a licensed clinical psychologist, and Dr. Horrigan is a board-certified child and adolescent psychiatrist.  Both have extensive clinical experience treating individuals with autism spectrum disorder (ASD).

Drs. Dawson and Horrigan welcome your questions on behavioral therapies, medical issues and other concerns related to autism. However, the guidance provided on the webchat is not meant to substitute for care by a personal physician and other appropriate care providers.

This and future webchats can be accessed via the “Live Chat” tab in the left column of the Autism Speaks Facebook page. You can also set up a personal email reminder with direct link here.

We hope you’ll mark it on your calendar:

The Doctors Are In!
* The first Thursday of every month
* 3 p.m. Eastern (2 Central/1 Mountain/noon Pacific)
* Join via the Live Chat tab at https://www.facebook.com/autismspeaks.

Read the transcript of last month’s “Office Hour” webchat here

Colgate University’s Autism Awareness Project

January 30, 2012 1 comment

This blog post was written by Erin Mast, the Chair for the Central New York Walk Now for Autism Speaks. She is an active member of the autism community and a mother of three boys. Erin and her family have cultivated a wonderful relationship with Colgate University’s Women’s Hockey team. For details about Colgate’s Autism Awarenss Project or to make a donation, visit www.colgate.edu/autism.

If you are reading this blog, then most likely you have some connection to autism. I have two wonderful boys, who happen to be on the spectrum. I also chair the Central New York Walk Now for Autism Speaks. Through my volunteer efforts, I was lucky enough to be involved with the first ever Autism Awareness Event at Colgate University, hosted by the women’s ice hockey team in 2011. On February 3 and the 4, the team is hosting their second event. They are planning amazing things and making such a huge difference to the members of their community. But, more importantly than that, they are changing the lives of people with autism. They are blessed with a wonderful manager, Kati, who is a huge part of the team. Kati has autism. But, it has gone further than that. My son Christian went along with me last year and it has honestly changed his life. He is now playing ice hockey with the Rochester Ice Cats, who are a member of the American Special Hockey Association. Christian was also asked to design the jerseys for the Colgate games throughout the weekend, which he did happily. The jerseys will be worn for two games and then auctioned off, the proceeds being donated to Autism Speaks and other local autism charities

If you would have asked me if an ice hockey program could have changed my life, I would have said, “Absolutely not.” How wrong I would have been. Please take a moment to check out all that the ladies at Colgate University are doing to make a difference in the autism community by going to http://colgate.edu/autism. Support the team and all their efforts! Better yet, join us at Starr Rink on Friday, February 3 at 7:00 pm. Their goal is to break last year’s record by having 1200 fans. Wear blue and get in for free!

Adults with Autism: Sharing Ideas, Filling the Gaps

January 30, 2012 30 comments

Guest post by Merope Pavlides, editor of AutismAfter16.com, author of Animal-assisted Interventions for Individuals with Autism and mom to two sons, one of whom is on the autism spectrum.

Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.

On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.

The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.

Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.

Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.

As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.

I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.

Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.

[Editor’s note: Thanks to our grant search engine, you can explore Autism Speaks-funded research concerning adolescents, adults and related services here.]

Weekly Whirl – Our Favorite Tweets!

January 27, 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.

Are you on Twitter? If you aren’t, you should be! Hop on and follow us at @AutismSpeaks! We picked out some of our favorite tweets of the week – enjoy!

@Kristiwright3: @autismspeaks here is our shirt this year with TEAM CLAYTON on the back with sponsor names :) pic.twitter.com/y8sftZqN

@DaiseeDukes3: @autismspeaks I wear an autism ribbon for my brother!!! <3 Hudson <3pic.twitter.com/KgRvKiOg

@DiaryofaMom: @autismspeaks thank YOU for your support of our #military families with #autism!#cmkaa @MrsSGMKenyon

@KristianPRGirl: 66 ppl on Team Jacob for 1st annual Walk Now for Autism event in Indy! Still time to join us. @autismspeaks

@PeterSRooney: Join @autismspeaks and 110 celebrity puzzlebuilders in raising funds for #autism. Check out #puzzlebuilderbit.ly/a69ydx

@briamduhamel: @autismspeaks same!:) most of my friends are aware of my Autism. My new motto is: “Autistic and Proud!”

@BrielleMissNJ: Meeting went awesome today! Proud to announce I’m your new 2012 Publicity Chair for Central NJ @autismspeaks :-) #autism

@MrsSGMKenyon: @autismspeaks THANK YOU for highlighting struggles our #military families face w/accessing #AUTISM therapies!blog.autismspeaks.org/2012/01/26/tro…#CMKAA

Autism in the News – 01.27.12

January 27, 2012 Leave a comment

NH school principal dives in river to rescue boy (Rochester, N.H.)
An elementary school principal in New Hampshire jumped into a frozen river to save a 10-year-old student who fell through the ice. Read more.

assembly passes set of mental health care bills (Sacramento, Calif.)
The state Assembly on Thursday passed a set of bills intended to broaden the mental health and health care services covered by private insurance plans. Read more.

7-year-old girl killed in fire (wymt tv)
A mother, her 19 and 7 year old daughters, and 2 month grandchild were in their home off Amos Baker road in the Sand Gap community when a fire broke out. Read more.

Health Insurance News (UK)
It could be possible to detect autism at a much earlier age than previously thought, according to a team of international researchers. Read more.

Angels, Duck, stars bowl for autism (Orange County Register)
The event, hosted by ACT Today! (Autism Care and Treatment) and the Eddie Guardado Foundation, will take place at Bowlmor Lanes, 2405 Park Avenue, Tustin, from 5 p.m. to 8:30 p.m. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,
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