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.
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.
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.
We hope you’ll mark it on your calendar:
Read the transcript of last month’s “Office Hour” webchat here.
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!
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.]
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!
@KristianPRGirl: 66 ppl on Team Jacob for 1st annual Walk Now for Autism event in Indy! Still time to join us. @autismspeaks
@briamduhamel: @autismspeaks same!:) most of my friends are aware of my Autism. My new motto is: “Autistic and Proud!”
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.
I’ve been reading news reports that it might be possible to detect autism by watching how much a 1-year-old focuses on a speaker’s mouth. Is this true?
In recent days, you may have read media stories about research showing that typically developing babies tend to switch from eye gazing to lip reading when first learning to talk, but then switch back to focusing primarily on a speaker’s eyes by 12 months. The research report appears online this week in the Proceedings of the National Academy of Sciences.
In reporting their results, developmental psychologist David Lewkowicz and doctoral student Amy Hansen-Tift, of Florida Atlantic University, suggest that this shift in focus may be different for infants who have autism spectrum disorder (ASD) or are at risk for developing it. Taking this idea a step further, they propose that paying attention to how babies shift their focus during their first year of life might help identify infants at risk for ASD – perhaps before other obvious symptoms emerge. To back their idea, they cite previous research suggesting that 2-year-olds with autism tend to look mostly at the mouths of those speaking to them, while typically developing 2-year-olds focus mostly on eyes.
It’s an intuitively appealing idea. But in truth, past studies have not consistently supported this notion that children with ASD focus less on eyes and more on mouths.
It is true that children with autism tend to pay less attention to social actions such as expressions. However, it’s possible that children with autism, like typical children, show a similar pattern of paying more attention to the mouth when they are learning language.
Given that language delays are common among children with autism, one would predict that this language-acquisition period might be prolonged. In addition one would expect that mouth-versus-eyes gaze patterns would vary among children with ASD depending on each child’s level of language skill.
Fortunately, while we don’t yet know whether eye gaze is a reliable predictor of ASD, research solidly supports the usefulness of other signs for screening toddlers. The American Academy of Pediatrics (AAP) recommends that all children receive autism screening at 18 and 24 months of age. One of the AAP’s recommended screening tools is the Modified Checklist for Toddlers, or M-CHAT, which you can access on our website, here. Please also see our Learn the Signs resource page.
Meanwhile, Autism Speaks continues to fund a wealth of research on early screening and diagnosis because evidence suggests that early intervention improves outcomes. You can explore these and other Autism Speaks studies here. This research – like all the resources Autism Speaks develops and offers – is made possible by our families and supporters. Thank you for your support.
For more research news and perspective, please visit our science page.
The following blog post by an Army Sergeant Major deployed to Afghanistan, who must remain otherwise anonymous, demonstrates vividly the extraordinary challenges faced by our military members raising children with autism. Visit ‘Welcome to Stim City‘ to follow Mrs. Sergeant Major’s Blog and to read original post.
Military families will finally get a chance to tell their stories to Congress on Tuesday, January 31. Learn more here.
The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”. The radio operator answers the call; “This is Iron Gray TOC. Roger, requesting air support at this time.”
Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan. I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater. I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.
So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved. My training kicked in. Clear the airspace and give me a fire mission of 155mm artillery.
It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in. AUTISM!? Artillery isn’t going to help that.
Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard. I just could not believe my little girl had autism. Yes, she was born with multiple disabilities but autism was never on the radar. Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism? Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me. To say I was busy during this deployment would be a gross understatement. The TOC was the heart of the Battalion’s operations and the heart never stopped beating. However, I had managed to find a few spare moments to Google “autism” which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around. Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies. I assumed RM’s school would be all over that. Evidently, as it turned out the school system in our town was not a “Friendly” element.
Never leave a fallen comrade.
Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind. I was appalled. Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator. It began to affect my performance. I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind. Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.
I decided to weigh in on the issue with the town. Lucky were the town personnel who were failing my child that were out of range of my artillery support. I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan. Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school. Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to make autism benefits accessible to all dependents as standard care. Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.
TRICARE should be like Combat Support. It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.
This is a post by Dr. Scott Standifer, a Clinical Assistant Professor for the Disability Policy & Studies office (DPS) at the University of Missouri. He is the author of Adult Autism & Employment: A guide for vocational rehabilitation professionals, and the organizer of the Autism Works National Conference, March 6 & 7, 2012 in St. Louis, MO.
The first call came in 2008, just after I started work on the first Autism Works National Conference: “Hi Scott, this is Tracey with Autism Works…” the woman said. “But, wait,” I thought, “That is MY project’s name…” Actually, I don’t have a copyright on the name, so it is legal for others to use it too. Still, it felt likeTracy stole my name.
Since then, I’ve had that same “Somebody stole my name!” feeling twice more as I discovered other groups with the same name. Who these groups are, and what we are each doing to advance autism employment, is a nice sample of some of the varied and vibrant approaches to this important field. Tracey, for instance, turned out to work for Community Gatepath, a Community Rehabilitation Provider (CRP) in California that had been given a grant for a special program serving adults with autism. They called it Autism Works.
A few years earlier, as part of my job helping state vocational rehabilitation agencies in four Midwestern states, I had discovered a profound lack of information about autism in the vocational rehabilitation community, and a similar lack of information about vocational rehab in the autism community. I ended up writing a reference guide on autism employment and starting the Autism Works National Conference.
Six months later, I found another Autism Works, this time in Minnesota. This one is a non-profit group that promotes not only employment, but also life planning and independent living for adults with autism. It was founded by Melissa Kenig-Davis, the parent of a young adult with Asperger’s Syndrome. Parent advocates are an important group in autism employment. They have started some of the most exciting autism employment projects in corporate America, including Randy Lewis at Walgreens and Heather Davis at TIAA-CREF. In Connecticut, parent Jim Lyman started Roses for Autism. In Missouri, parent Kate Duffy teaches job-seeking-skills courses for autism and has co-written a book on employment withTempleGrandin. Heather Davis, Kate Duffy, and Melissa Kenig-Davis were all at our 2011 conference.
And then it happened again – last summer, I found a group called Autism Works UK. Peter MacDonald is the Director of Autism Works UK, which is part of a business movement spearheaded in the U.S. by Aspiritech in Chicago. These businesses hire adults with Asperger’s Syndrome to test computer software. Apparently, when innovative programmers finish their software masterpieces, they often don’t feel like going back to recheck every function and explore every possible input for mistakes. So they hire software testers. For us neurotypicals, software testing can be terribly boring; it requires lots of repetition, documentation, endless lists, etc. But for Aspies, routinized work like this is often appealing and easy. Aspiritech and Autism Works UK don’t market their services by pleading, “Please help these poor young people.” Instead they say, “Our unique workers do a better job than anyone else.” WOW! What an empowering message!
Peter MacDonald and I had a long talk about the challenges and opportunities of this exciting business model. Peter, Aspiritech, and folks from three similar companies will be on a panel at our Autism Works National Conference in March.
So even though each of our groups picked the same name, we are all engaged in different and complementary projects. Discovering these other Autism Works has taught me interesting new things about career options for adults with autism.
Lately I’ve had the feeling that somewhere, someone else is getting ready to choose the Autism Works name for some new kind of employment project. I can hardly wait.