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

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.]

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 #puzzlebuilder: bit.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

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.

This week’s “Got Questions?” answer is from Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

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.

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.

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.

9th annual Flutie Bowl (Wicked Local)
Richie La Montagne, a former U.S.B.F. Cruiser weight champion, chats with Doug Flutie (L to R) at the 9th annual Flutie Bowl on Monday, January 23. The event was held at Kings at Legacy Place to benefit the Doug Flutie Jr. Foundation for Autism established by Doug Flutie and his wife Laurie to honor their son Doug, Jr. who was diagnosed with autism at the age of three. Read more.

Pounding the pavement calms runner with autism in Lake (Mount Dora, Fla.)
When Kyle Krekeler showed up at the Mount Dora Christian Home and Bible School track in July to join a local running group, trainer Vickie Steuben encountered a problem. Read more.

My son had autism. Then he didn’t. (Parenting.com)
I’m trying to hold him, but he’s squirming. The airport lounge is packed with people, and I can feel all eyes on me: the dad who cannot appease his toddler. Brandy sees me struggling, and comes up with a quick fix. She flips over the stroller. She places Jackson next to it. He begins to spin one of the wheels with his hand. He keeps spinning it. Over and over and over. He’s completely absorbed. I look at Brandy quizzically. She shrugs. Read more.

Millville autism support group Puzzle Peace Moms announces 2012 meetings (Millville, N.J.)
The only autism support group in the county announced meeting dates for 2012, held at the Mt. Pleasant Church social hall on 29 Pearl St. in Millville. 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.

The 2011 session of Camp Good Times of Charleston, a recipient of an Autism Speaks Baker Summer Camp Scholarship Fund, was activity oriented, fun, child centered, and safe for the 130 children who attended this past June. Our camp includes not only children on the autism spectrum, but neurotypical peers who come to camp, have fun, be campers and friends with everyone.

The highlights from our 12 days include…swimming everyday, field trips to area water parks, malls and movies, a visit from a Therapy Dog group, Spray Play with the local firefighters(which was really cool!), The OT class from The Medical University of South Carolina joined our staff for a day, a “Valentines Day” party, summer solstice party for our younger campers and parents, Yo-Music, a blend of Yoga and Music, art, sports, computers, singing and dancing, piñata party, pizza and the campers favorite part of the day…SNO_CONES!

Below are some of the individual campers who benefited from the Autism Speaks Baker Summer Camp Program grant:

Four of the children who attended live in a group home. The three girls, Jen, Dee Dee, and Monique have been in a residential group home for girls with ASD for as long as I have known them. Ahmad has been a camper for many years, and has only recently been placed in a group home run by the same organization. I was fortunate to be able to offer the Baker Summer Camp Scholarship opportunity to these children, since other public funding was not available and they would not have come to camp with out it.

Two of the campers who attended through the generosity of Autism Speaks had to have their own personal assistant due to medical needs. These families were able to get financial assistance for the medically necessary aides, but there was no funding left for the camp fees. I know these families want their child to have a typical summer camp experience and the respite provided them was much needed. The Baker Summer Camp Scholarship was able to provide that.

The other campers and families also have challenges throughout the school year. I have gotten to know these families very well, all of the camp families, and the fun experience that Camp Good Times provides their child and the respite provided the families is what they value. For more info and pics…visit www.campgoodtimesofcharleston.org!

Revision to DSM Manual Could Substantially Affect Autistic Individuals and Their Access to Services (Forbes)
The first substantial revision to the Diagnostic and Statistical Manual of Mental Disorders (D.S.M.) will be finalized by the end of 2012. Already, the revisions are 90 percent complete according to the task force that is revising the manual. It has been 17 years since the last big overhaul of the manual, and some are worried about how some disorders could be redefined. Read more.

Autistic teen swims his way to success at Fondy High (Wausau Daily Herald)
When Hunter Develice wanted to join the Fond du Lac High School swim team, his father was told that perhaps the family should consider Special Olympics instead. Read more.

Comprehensive $5 million autistic center to open in Howard Beach (Howard Beach, N.Y.)
A Queens group plans to transform a Howard Beach Chinese restaurant into a $5 million comprehensive center for autistic children and adults. Read more.

Women’s hockey launches 2012 Autism Awareness Project (Hamilton, N.Y.)
The Colgate women’s hockey team will kick off its second annual Autism Awareness Project during its home contest against Union on Feb. 3 at Starr Rink in Hamilton. 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.

But many more will be unable to make it to Washington for the briefing.

Autism Speaks believes their voices need to be heard as well. We are making it possible for these military families to record a brief story about their experiences and upload it to our YouTube page. We will share as many of these videos as possible with Congress, including airing portions of them during the meeting.

Visit our YouTube page to find out how you can participate!

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. 

This is a blog post by Lisa Goring, Autism Speaks Vice President, Family Services.

A recent research study funded by Autism Speaks reached a conclusion that probably would surprise few in our community: Teens with an autism spectrum disorder (ASD) often face major obstacles to social life outside the classroom. Given that one of the hallmark features of autism is impaired social interaction, it’s not hard to imagine why teens on the spectrum typically have difficulty making friends and participating in social activities, especially outside of school.

Unfortunately, social challenges are often considered the norm for kids growing up with autism. But this needs to change. The good news is that change is underway. Innovative approaches – ranging from group golf lessons to Girls Night Out – have been launched across the United States with the support of Family Services Community Grants from Autism Speaks. Their goal is to improve the socialization skills of teens and young adults with autism.

The research study was originally funded by Autism Speaks as a Pilot Grant in 2010 and then published in the November 2011 issue of PLoS One by a team led by Paul T. Shattuck, Ph.D., of Washington University, in St. Louis. The study analyzed data collected from a large number of adolescent students with autism enrolled in special education.

When compared to students with other special education needs, such as learning disabilities, mental retardation* and speech-language impairment, teens on the spectrum are significantly less likely to see friends out of school (43.3 percent), never to get called by friends (54.4 percent) and never to be invited to social activities (50.4 percent).

Empirical data such as the information from this study helps drive awareness and decision making. Based on these results, we now know with more certainty that many adolescents with ASD struggle to fit in with their peers. Backed with facts and figures, we can advocate for additional services and supports, target our research toward social skills interventions, develop better policies, and, ultimately, create more and better services and programs.

In this case, the research reaffirms the need for initiatives such as the Family Services Community Grant program that Autism Speaks created five years ago with two goals in mind: 1) to build the field of services for individuals with autism and 2) to expand the capacity to effectively serve this growing community. In addition, a Transition Tool Kit was created and launched last year to help guide the transition from adolescence to adulthood. Both cases demonstrate how Autism Speaks is providing solutions to help families address real challenges identified or documented through research.

The Community Grants [JSS1] are designed to meet needs in education, recreation and community activities, and specifically [JSS2] young adult and adult programs. Among the elements that go into a successful proposal are innovation and the ability to be replicated elsewhere.

To date, Autism Speaks has funded 193 community grants totaling almost $4.0 million across North America. A sampling of recent grant awards demonstrates how community initiatives across the country are addressing the need for social activities targeted to teens and young adults. Here are a few examples:

• Several suburban school districts outside of Philadelphia banded together to organize “Acting Antics,” a program using live theater as a way to teach social cognition skills. Student actors perform in short scenes with a partner, each assuming the persona of a particular character. The exercise requires each student to consider the character’s perspective, creating an opportunity to teach this skill in a fun and non-threatening manner. The Autism Speaks grant will be used to expand the program to other school districts.

• In Kansas City, a Girls Night Out program was established through the University of Kansas to build social competence and self-care skills for teen girls on the autism spectrum. The sessions take place in community settings such as a hair salon, coffee shop and gym. The community grant from Autism Speaks will be used to provide opportunities for girls with ASD to interact with typically developing peers during age-appropriate activities while improving social competence, friendship development, social skills and improved self-care skills.

• Golf was the theme of “Far from Par,” a summer golf program for 16 middle and high school students in Bergenfield, N.J., that set out to improve communication, social and physical skills, and help the students forge closer bonds with peers, siblings and parents. The Family Services grant enabled the program to double attendance.

• The Outdoors for All Foundation, in Seattle, was awarded a grant to expand its outdoor recreation program for children and adults living with ASD and their friends and families. The foundation was also able to design a week-long adventure camp for teens with high functioning autism as a result of their grant.

Our research funding will continue to help us target our family service grants toward specific areas of need and also allow for the development of new and more effective autism services.  We will continue to make use of those research findings to develop and expand new programs is equally important to improve the quality of life of teens and young adults on the spectrum. Autism Speaks would like to thank its supporters for helping us fund our science and family services grant programs.

*Although current consensus in the field eschews us of the term “mental retardation” in favor of “intellectual disability”, the study authors used the mental retardation term “to be consistent with the special education legislative definitions of the various disability categories and the way the survey data were collected.”

Autistic boy beat up at the bus stop while peers watch and cheer; One posts video on Facebook  (The New York Daily News)
The horrified parents of an autistic sixth grader watched video of their son being pummeled by a peer after another student posted the disturbing footage on Facebook. Read more.

Study links autism, intestinal bacteria levels (Columbia Spectator)
Researchers at Columbia may be making strides toward understanding the neurological disorder of autism–starting with, of all places, the intestine, according to a recent study. Read more.

Families Wait Patiently for Autism Insurance Coverage (Leesburg Patch)
Last spring, Gov. Bob McDonnell (R) signed into law a bill mandating that insurance companies help pay for the treatment of autistic children. Read more.

White Knuckle Parenting: Horrible Homework (Silver Spring Patch)
My youngest son started kindergarten in the fall of 2010. His two older brothers were already students at the local elementary school and before the school year ended in June of 2010, they were sent home with summer learning packets to complete over the summer. At the last PTA meeting of the year, I was the jerk parent who asked if there were packets for incoming kindergarteners. 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.

CES (Consumer Electronics Show) is big, really big. Crazy big. The annual show hosts some 140,000 attendees and features some of the most incredible technology, gadgets and ideas that shape how we interact with our world. The main purpose of my attending was to support a recent partnership between Autism Speaks and Audax Health’s Careverge [link]. Starting back in October, when we held the first “Hacking Autism“ event technology has been on my mind, and as we saw on that incredible day, mobile apps and tablets are literally transforming the autism experience across the autism spectrum. It’s led me to start asking what I think is a great question: “How will new digital technologies and digital platforms transform the lives of those on the spectrum today and in the future?”

We continue to try to answer that question at IMFAR, our Core77 competition and have some exciting news to share in the days ahead about what’s next for “Hacking Autism.” I’m thrilled here to blog about a new partner, Careverge.

Careverge as you’ll see and hear in the video below is on the forefront of the “digital health” revolution. Spurred on by massive consumer pain and ever spiraling health care costs, entrepreneurs like Grant Verstandig, the Founder and CEO of Audax Health are bringing together a combination of technological ideas and experience, social networking, data analysis and gaming to create innovative and frankly, incredibly cool solutions.

I don’t know how Careverge will help you and your family but I suspect that you’ll come up with new ways to use the service.  There are already more than 200 members of the “Autism Speaks” community and now it’s your turn.  If you believe like I do that technology can and is making a different TODAY for all those on the autism spectrum, please register on the Autism Speaks Careverge site and and send us your feedback!

Guest post by epidemiologist

In recent years, several reports have suggested that children with autism or other learning or behavioral developmental disabilities are more likely than typically developing children to have health conditions such as respiratory or gastrointestinal illnesses.

However the studies behind these reports were often small and showed inconsistent findings. Some of their methods had limitations. One of the biggest problems was that they didn’t adequately compare children with different types of developmental disabilities. Because of these limitations, many public health professionals and healthcare providers have been skeptical about whether children with autism or other behavioral developmental disabilities truly faced an elevated risk of other medical problems.

My colleagues and I wanted to help paint a clearer picture of this important public health issue. Our study, recently published in the journal Research in Developmental Disabilities, compared the medical conditions and healthcare needs of children with developmental disabilities with those of children without developmental disabilities. We also compared children with autism with those who had other developmental disabilities.

We assessed children included in the National Health Interview Surveys from 2006 to 2010. Households throughout the United States are randomly selected to participate in this annual survey. In households with children, one child is randomly selected to participate. Each child’s parent or other primary caregiver is interviewed in-person about the child’s health and development. Interviewers asked whether a doctor or other healthcare provider has ever told them the child has certain conditions including autism and several other developmental disabilities. We also ask if the child has a health condition such as asthma or has experienced other symptoms such as frequent diarrhea or colitis in the past year.

We included more than 41,000 children aged 3 to 17 years in the study. Of these, 5,469 had one or more of the following five developmental disabilities:  autism, intellectual disability, attention deficit and hyperactivity disorder (ADHD), learning disability or other developmental delay.

As a group, these children had higher than expected rates of all of the medical conditions we studied. More specifically, they were:

* 1.8 times more likely than children without developmental disabilities to have ever had an asthma diagnosis,

* 1.6 times more likely to have had eczema or a skin allergy during the past year,

* 1.8 times more likely to have had a food allergy during the past year,

* 2.1 times more likely to have had three or more ear infections during the past year,

* 2.2 times more likely to have had frequent severe headaches or migraines during the past year, and

* 3.5 times more likely to have had frequent diarrhea or colitis during the past year.

These increased rates of health conditions held true even for children diagnosed with ADHD or learning disability, but not diagnosed with autism or intellectual disability.

However, one finding stood out in particular when we compared the developmental disability groups to each other: Children with autism were twice as likely as children with ADHD, learning disability or other developmental delay to have had frequent diarrhea or colitis during the past year. They were seven times more likely to have experienced these gastrointestinal problems than were children without any developmental disability.

This detailed assessment demonstrates that children with autism or many other types of developmental disabilities do, in fact, face an increased risk for many common health conditions. This, in turn, provides evidence that children with developmental disabilities require increased health services and specialist services, both for their core functional deficits and for health problems beyond their core developmental disabilities.

Reference: Schieve LA, Gonzales V, Boulet SL, Visser SN, Rice CE, Van Naarden-Braun K, Boyle CA. Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006-2010.  Res Dev Disabil. 2011;33:467-76.

Read more autism research news and perspective on the science page. Explore the studies Autism Speaks is funding with our Grant Search. And thanks for making this research possible! 

Living with no insurance coverage for autism (The Washington Post)
Many families in Virginia who expected insurance coverage have continued to pay out of pocket — if they can afford it — or forgo treatments they say could help their children. The General Assembly is taking another look at bills that could offer relief. Read more.

Autism awareness teaches more than just facts (Autism Support Network)
Autism awareness is everything. The difference between being unaware and awareness can be illustrated in looking at my son’s high school experiences and the journey he took toward social interaction. In reflecting on these emotionally charged years I realized something else…. there is enormous harm inherent in a school system that does not provide autism awareness to its general student population. Read more.

Fox’s ‘Touch’ stars Kiefer Sutherland as father of autistic child (Asbury Park Press)
Autism is front and center in a new TV series starring Kiefer Sutherland that will preview at 9 p.m. Wednesday, Jan. 25, on FOX. The series premiere of “Touch” is scheduled for Monday, March 19, in Sutherland’s old “24″ spot. I’m not sure what a preview is, unless it’s basically the pilot. Read more.

Perspective: Narrowing Autism Definition Will Cost More, Later (Common Health)
Ilyse Levine-Kanji is a school committee member in Westborough, Mass. and a former employment discrimination lawyer. Her son, Sam, has autism. As a school committee member, I recognize how costly services for autism are, and I understand the current urge to more narrowly define autism. As a parent of a child with autism, I also know that the costly supports my son Sam has received – from his school, through our insurance company, and from our own pocket – have helped him immeasurably. 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.

Posted by Autism Speaks Chief Science Officer Geri Dawson, PhD.

Many in our community are understandably concerned that a planned revision of the medical definition of autism spectrum disorder (ASD) by the American Psychiatric Association (APA) will restrict its diagnosis in ways that will prevent many persons from receiving vital medical and social services.

Before I catch you up on some of the details behind this revision, let me first say that although the proposed changes have a solid scientific rationale, we at Autism Speaks are likewise concerned about their effect on access to services. It is crucial that these changes don’t result in discrimination against people who are struggling with autism symptoms.  As the APA moves forward in formalizing the new definition, we urge that this issue be kept at the forefront of the discussion. As the changes are implemented, scientists, families and providers will all need to carefully monitor its impact on those affected by all forms of ASD. The bottom line is this: We must ensure that all those who struggle with autism symptoms get the services they need.

Now let me provide some background.

The APA is currently completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in 2013. The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. As such, it influences availability of treatments as well as insurance coverage.

An expert panel appointed by the APA has proposed that the new version of the DSM change the current definition of ASD, in part because of shortcomings in how it is currently used for diagnosis. The new definition would do three things. First, it would eliminate the previously separate categories of Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS) from the diagnostic manual. Second, it would fold these disorders, together with “classic” autism, into the single category of ASD. Finally, it would change the criteria for diagnosing ASD.

Under the current definition, a person can qualify for an ASD diagnosis by exhibiting at least 6 of 12 behaviors that include deficits in social interaction, communication or repetitive behaviors. Under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors. The APA has also proposed that a new category be added to the DSM – Social Communication Disorder. This would allow for a diagnosis of disability in social communication without the presence of repetitive behavior.

Based on a recent study, some experts are suggesting that many individuals who currently meet the criteria for ASD, especially those who are more cognitively capable, would no longer meet criteria for ASD. If so, the new criteria would result in discrimination against people who are more cognitively capable.  We are concerned about this and will do all we can to ensure that all people who are struggling with autism symptoms retain the services they deserve.

As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.

It is important to keep in mind that this revision in the medical definition of ASD is not just an academic exercise. These changes in diagnostic criteria will likely have important influences on the lives of those in our community who critically need services.

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

• Then, please join us for a live web chat at 3 pm Eastern with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring – click on the tab on the Autism Speaks Facebook page to join in!

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

• Autism Speaks’ Dr. Andy Shih will be live on MSNBC “News Nation with Tamron Hall” at 2:20 EST
• Then, please join us for a live web chat at 3 pm with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring at 3 pm – click on the tab on the Autism Speaks Facebook page to join in! Click here for instant access to the tab. You can read the completed transcript of the chat here.
• Today’s New York Times story, ‘New Definition of Autism Will Exclude Many, Study Suggests‘
  quoted Mark Roithmayr. This is what will be discussed on the stories to be aired today and the webchat.

Read Geri Dawson’s blog post about the DSM-5, The Changing Definition of Autism: Critical Issues Ahead.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

This week we have been partnered with Sevenly, an awesome organization whose mission is, “To raise capital and awareness for the world’s greatest causes.” The Autism Speaks campaign set the record for the most funds raised on the first day! We would like to send a big THANK YOU to all of those who made it possible!

Don’t worry though, you still have until Monday, January 23 to get in on the action! Just visit http://sevenly.org/ and grab some swag!

Join hosts Matthew Asner and special guest host, author Monica Holloway for two hours of talk and interviews this Saturday 6:00 to 8:00 PM ET on Sirius/XM Family Talk Channel 131! 

People wishing to participate should call 800-679-7650 During the show or Tweet their questions to @Autismamericar. Listen online at http://www.live365.com/stations/autismamerica?play or as a podcast on iTunes! You can also visit Autism America Radio on Facebook!

Kansas City girl with autism found safe (Kansas City, Kan.)
An autistic 15-year-old girl Kansas City girl who had been missing overnight has been found safe. Read more.

Autism Bill on the Fast Track in General Assembly (WHSV.com)
The General Assembly votes today on a bill that could mean better insurance for children with autism. The law passed last year, but got held up behind state rules. Today’s vote will be final passage. The legislation means that parents do not have to pay out of pocket for early treatment of autism. Read more.

Battling autism: Lawmaker wants to require insurance coverage (Layton, Utah)
Five-year-old Jaden Petersen focuses intently as he traces the dotted outlines of numerals on a piece of paper. Therapist David White sits next to him at a low table. Read more.

Autism Fundraiser For ‘Sensory Home Makeovers’ Set For Feb. 4 (West Hartford, Conn.)
A silent auction to raise money for “sensory home makeovers” to benefit children with autism and their families has been rescheduled for Feb. 4. 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.

This week’s

If you’ve been following autism research in recent years, you have probably read—many times—that familial, or inherited, risk is seldom the whole picture. A few inherited genes are sufficient by themselves to cause autism. But most so-called “autism genes” only increase the risk that an infant will go on to develop this developmental disorder. As is the case in many complex diseases, it appears that autism often results from a combination of genetic susceptibility and environmental triggers.

This is where epigenetics comes in. Epigenetics is the study of the factors that control gene expression, and this control is mediated by chemicals that surround a gene’s DNA. Environmental epigenetics looks at how outside influences modify these epigenetic chemicals, or “markers,” and so affect genetic activity.

It is important to remember that scientists use the term “environment” to refer to much more than pollutants and other chemical exposures. Researchers use this term to refer to pretty much any influence beyond genetic mutation. Parental age at time of conception, for example, is an environmental influence associated with increased risk of autism, as are birth complications that involve oxygen deprivation to an infant’s brain.

Because epigenetics gives us a way to look at the interaction between genes and environment, it holds great potential for identifying ways to prevent or reduce the risk of autism. It may also help us develop medicines and other interventions that can target disabling symptoms. We have written about epigenetics previously on this blog (here and here). So in this answer, I’d like to focus on the progress reported at a recent meeting hosted by Autism Speaks.

The Environmental Epigenetics of Autism Spectrum Disorders symposium, held in Washington, D.C. on Dec. 8, was the first of its kind. The meeting brought together more than 30 leaders in autism neurobiology, genetics and epidemiology with investigators in the epigenetics of other complex disorders to promote cross-disciplinary collaborations and identify opportunities for future studies.

Rob Waterland, of Baylor College of Medicine in Texas, described epidemiological studies and animal research that suggested how maternal nutrition during pregnancy can affect epigenetic markers in the brain cells of offspring.

Julie Herbstman, of Columbia University, described research that associated epigenetic changes in umbilical cord blood with a mother’s exposure to air pollutants known as polycyclic aromatic hydrocarbons (PAHs). PAHs are already infamous for their association with cancer and heart disease.

Rosanna Weksberg, of the Hospital for Sick Kids in Toronto, discussed findings that suggest how assisted reproductive technology may lead to changes in epigenetically regulated gene expression. This was of particular interest because assisted reproduction has been associated with ASD. Taking this one step further, Michael Skinner, of Washington State University, discussed “transgenerational epigenetic disease” and described research suggesting that exposures during pregnancy produce epigenetic changes that are then inherited through subsequent generations.

Arthur Beaudet, of Baylor College of Medicine, discussed a gene mutation that controls availability of the amino acid carnitine. This genetic mutation has been found to be more prevalent among children with ASD than among non-affected children, suggesting that it might be related to some subtypes of autism. Further study is needed to follow up on the suggestion that dietary supplementation of carnitine might help individuals with ASD who have this mutation. Caution is needed, however. As Laura Schaevitz, of Tufts University in Massachusetts, pointed out, studies with animal models of autism suggest that dietary supplementation may produce only temporary improvements in symptoms of neurodevelopmental disorders.

So what does this all mean for research that aims to help those currently struggling with autism? The meeting participants agreed that the role of epigenetics in ASD holds great promise but remains understudied and insufficiently understood. For clearer answers, they called for more research examining epigenetic changes in brain tissues. This type of research depends on bequeathed postmortem brain tissue, and Autism Speaks Autism Tissue Program is one of the field’s most important repositories. (Find more information on becoming an ATP family here).

The field also needs large epidemiological studies looking at epigenetic markers in blood samples taken over the course of a lifetime. One such study is the Early Autism Risk Longitudinal Investigation (EARLI). More information on participating in EARLI can be found here.

Autism Speaks remains committed to supporting and guiding environmental epigenetics as a highly important area of research.  We look forward to reporting further results in the coming year and years.

Got more questions? Send them to gotquestions@autismspeaks.org.

Read more autism research news and perspective on the science page.

“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future.

When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day. I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy. It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely.

Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships. I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.

Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs.  We have also focused on developing a good working relationship with the local community which benefits everyone involved.

Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.

For more information about Farmsteads of New England, visit them here.

For more information about the new Autism Speaks Housing and Residential Supports Portal and tool kit, please click here.

I’m standing on a tennis court in my neighborhood.

Despite trees baring no leaves, the weather belies the time of year as the sun warms our exposed arms.  I have an unlikely tennis partner by my side:  my 17-year-old autistic son. This was his idea today.  A breeze tickles through our hair, birds on a Southerly journey pause to sing, as if for us.

My other son–an avid tennis player capable of sending balls at a fast pace swooshing right by me before my eyes can barely register it–stands on the other side of the court, playing left handed so as to ease the pace of the game and give us a fighting chance.

We have playful rallies.  We work on helping my oldest son by my side call out “mine” or “yours.”  We laugh over mishits, and occasionally my youngest son can’t help creaming a ball at me.  I can’t help trying to return it with equal power, most often hitting the net and hoping I don’t tax my old lady joints too badly.

I ponder the present moment. I am playing tennis with both of my boys. No one is rushing the moment.  No one is embarrassed. No one is anxious.  There are no “scenes.”  My oldest son, who usually surveys his surroundings on heightened guard, seems like that layer of self protectiveness is not required on this day.  He has stepped outside, something he doesn’t do much in our neighborhood, as he prefers the security and comfort of home. Yet on this day he is standing calmly and happily in the sunshine by his own initiative.

My husband, our dutiful ball boy and resident coach, asks our oldest son:  “Why are you smiling so much?”

He answers,  “Because I’m so happy.”

We hit some more.  I feel comfortably wrapped in gratitude and joy.  At the end of our playing time, I hug each son for different reasons; heroes to me in their own unique way.

As my husband and youngest son want to play longer, I ask my oldest son if he would like to walk around to see the other courts, playground and pool closed for the winter.  Normally, he would want to leave and go back home to what feels most comfortable. On this day, he says, “Let’s walk.” And we do.  Strolling, peacefully taking in the view. We end our walk, viewing my husband and other son playing some more, as we stand on a higher platform looking down at them.

And then expectations begin to seep in.  “Maybe you might like to come up to the high school to watch your brother play sometime.”  “Well, maybe,” he answers.  I imagine him sitting in the stands with us; my heart yearns and hopes.  I then bring up that his yoga class will be resuming now that the holiday break is over.  An intruding bit of anxiety hits my son, “I’m not sure if I want to go back to yoga, Mom.”  He is recalling that the instructor had coughed the last time and how that bothered him.  I find myself wanting to say some sort of validating thought coupled with some problem solving advice as I feel yoga is good for my son to cultivate self-awareness and inner calm.  I don’t want him to discount all he loves about a person simply because they coughed as he sometimes tends to do.  I find a bit of sadness creeping into my heart.

And then I suddenly feel quite aware of myself.  Why am I clouding such a perfect moment—the calm and peaceful present—with expectations about the future?  Why would I allow such intrusions?  I switch back to what matters most:  this moment I’ve been given.

The sun.  The breeze gently whispering.  The crisp sound of my youngest son’s racket making contact with a ball as he plays tennis with his dad. My oldest son by my side, entirely calm, having just happily played tennis and taking a leisurely stroll with me.

He then puts his hand up for a minute to gesture for me to pause.  “Listen, Mom to the birds.”  And we stand together and hear their song.

He adds, “I feel so good inside.”  My boy’s song amongst the birds.  A mother’s spirit aloft and soaring.

We stand side by side gripping the iron rails of a fence, looking down at my husband and youngest son playing tennis. My emotions flow forth.  “Oh, Mom is crying,” my husband says with a smile on his face as he looks toward me with understanding.  My son by my side looks at me and offers, “Mom cries when she’s happy, but I only cry when I’m sad.”   My husband replies, “Why do you think she does that?”  He says, “Because she is proud of me.”

Red Devils for Donegal Challenge (UK)
United legends joined Irish actor and Boyzone member Keith Duffy to officially launch the annual Big Red Bike Ride challenge which will visit Donegal later this year for some very deserving charities. Read more.

Attitudes towards disabled more negative in past five years – report (Ireland)
People in Ireland’s attitudes towards those with a disability have become more negative in the last five years, according to new research out today. The National Disability Authority has said that attitudes have changed since they carried out a similar survey in 2006 which aims to provide evidence on the attitudes to disability among men and women in Ireland. Over 1,000 people were interviewed. Read more.

Fix to autism measure heads to full House (Times Dispatch)
Children with autism could have treatments covered by insurance by the end of this year under a measure that a House of Delegates committee passed this morning. Read more.

Boxing in aid of Dubai Autism Center (Dubai)
American kickboxer Bob ‘The Beast’ Sapp and UAE’s only professional boxer ‘Arabian Warrior’ Eisa Al Dah will be the main drawcards at the Dubai International Boxing Championship (DIBC) to be staged next month. 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.

Dubai boxing championship details revealed (Dubai)
The organising committee of the Dubai International Boxing Championship (DIBC) held a press conference today at the Dubai Sports Council; to reveal the details of the tournament. Read more.

Baking With a Twist: Felecia Rozansky’s Recipe to Help Autism (East Meadow Patch)
Fifteen years ago, East Meadow business owner Felecia Rozansky was looking at storefronts to open a new cookie shop, but when her son Eric was diagnosed with Autism, everything came to a halt. Read more.

Giving it back: Els’ off-course passions (CNN)
As one of the world’s most successful golfers, Ernie Els has got it all. The three-time major winner is famous for his sporting achievements, but he is giving a lot back to the game he loves and the country he cherishes. Read more.

A Lack of Autism Training (Advance)
To date, my graduate student extern (referred to as “student teacher” from here on out for the sake of convenience) has been with me for two weeks now. I’m hoping she has learned a lot so far, as I know I have learned things from her already. Having a student teacher really has caused me to do some self-reflecting on my own therapy and what I could be doing better to help my students. However, that is a blog topic for another day. 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.

View this Episode on their YouTube channel here

University President James Browne welcomes attendees.

Posted by Simon Wallace, Autism Speaks director of scientific development for Europe

A fine mist was rolling in off the Atlantic as we made our way to the opening session of last week’s International Conference on Autism at the National University of Ireland, in Galway. Autism Speaks partnered with the university and the American Ireland Fund to put together a program that attracted not only researchers and clinicians, but also parents and policy makers. In all, more than 600 delegates attended this productive conference in the beautiful town of Galway, on Ireland’s west coast. The meeting was very much the brainchild of Autism Speaks board member Adrian Jones, a native of Ireland who now works for Goldman Sachs, in New York City. (You can view the full program here.)

Parents and educators joined researchers and physicians.

We received a warm welcome from National University of Ireland President James Browne before spending two days hearing from international experts on advances in clinical practice, early intervention therapies and educational supports. As hoped, the presentations spanned the range of evidence-based practices in the United States and Europe. This included important information coming out of our own Autism Treatment Network (ATN) and other Autism Speaks programs and initiatives.

The morning presenters included Helen McConachie, of Newcastle University, who spoke about early intervention. Gillian Baird, a pediatrician from Guy’s Hospital in London, spoke as the chair of a committee that developed the United Kingdom’s clinical guidelines on referral and diagnosis of children and teenagers with autism. Also presenting was Cathy Lord, of Columbia University. Lord has been centrally involved in the upcoming revision of the Diagnostic and Statistical Manual (DSM), which physicians use to diagnose autism and related disorders. She explained that there would no longer be three separate diagnoses of autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). In the future, these will all be included under the unifying diagnosis of autism spectrum disorder (ASD). This is to avoid the persistent inconsistencies in how physicians assign children to one of the three subtypes.

Afternoon workshops included a presentation by our own Vice President for Translational Medicine Rob Ring, who spoke about the latest evidence for clinical use of medications for patients with autism. ATN Program Director Nancy Jones presented on the network’s ongoing work developing best practices and clinical guidelines.

Connie Kasari, of the University of California-Los Angeles, presented the second day’s keynote address, which focused on the large numbers of children with autism who receive services in schools—and the need for more research on the effectiveness of these services. Among the interesting research findings that Kasari described was the insight that young children with autism are more “socially connected” than we previously assumed. Around 20 percent, she explained, enjoy close friendships. Intriguingly, Kasari has observed that this social connectedness drops when schoolchildren with autism go out for recess.

Minister Reilly speaks with reporters.

For me, the highlight of the second day was a presentation by Jamie Reilly, who spoke of the challenges growing up with autism and how he went on to graduate from Ireland’s top-rated university and is now studying for a master’s degree in Belfast. Reilly spoke of the importance of his family—in particular how his “mum” taught him strategies for overcoming many of the difficulties he encountered. He also described how he occasionally continued to make mistakes—for example, saying “good riddance” rather than “goodbye” to one of his teachers at the end of a lesson. With his fantastic sense of humor, Reilly kept us laughing throughout his presentation.

We also heard from Jamie Reilly’s father—James Reilly, a physician and Ireland’s current minister of health. Minister Reilly’s emotional presentation spoke of his pride in his son’s achievements and respect for his wife’s determined efforts to ensure that Jamie had the opportunities he needed. The minister spoke of the need to provide the best evidence-based approaches to help children with autism reach their full potential. He also announced his ministry’s commitment to provide an additional $4 million over the next three years to improve diagnostic and early intervention services. Minister Reilly will also be creating a senior post to coordinate autism-related activities across Ireland’s departments of health and education.

As we wrapped up this fantastic conference, many delegates told us that this was the largest conference ever held at the university and one that stood out in the sheer number of stakeholders from the autism community. We left for our homes and workplaces with the feeling that we are on the “front foot” for the New Year, thanks to what we learned about the latest research and guidelines on evidence-based practices.